Saturday, December 21, 2013
Monday, December 16, 2013
Prayers Requested: Passing of Helen Phelps
It is with a heavy heart and great sadness that I inform you of the death of Helen Phelps, wife of Deacon Stephan Phelps. Helen passed away in her sleep Friday night. Her death was very unexpected. An autopsy on Saturday revealed a rare form of cancer that had gone undetected. The cancer was very aggresive and had attacked most of her major organs.
Arrangements are pending. Deacon Stephan is a judge at the Archdiocese of Louisville Tribunal and serves at the Cathedral of the Assumption.
Please keep Deacon Stephan and all their family in your prayers.
We pray for Helen's eternal rest and joy in the fullness of the Kingdom.
Location:Louisville, KY, USA
Inspiration: Best Cancer patient and survivor stories 2013
Throughout the year, cancer patients and cancer survivors at MD Anderson share insight, advice and stories from their cancer journeys, giving us inspiration and hope.
Here are some of our best stories from patients and survivors in 2013.
Getting married after cancer: Guilt is part of the diagnosis
Before proposing to his girlfriend, Justin Ozuna couldn't stop thinking about how the proposal would align with his cancer diagnosis and his uncertain future. Find out how the couple accepted their new reality.
Bodybuilding: How a breast cancer survivor regained confidenceAfter a breast cancer diagnosis, double mastectomy and reconstructive surgery, Sonia Byrd decided to retake control of her body and life. So, she signed up for a bodybuilding fitness contest. Read her story.
Support groups: A cancer patient's best friendLike many cancer patients, Mike Snyder originally shrugged off his doctor's suggestion to join a support group. But after his bone cancer returned, a co-worker invited him to join one. Learn how this experienced changed him.
A melanoma survivor's take on tanning beds
After tanning three times a week starting at the age of 15, Cheri Huber was diagnosed with melanoma in her mid-30s. Now cancer-free and a mom of two young girls, she's a strong supporter of a new Texas law that prohibits minors from using tanning salons. Read her story.
After chordoma: Coping with anger and change
After two surgeries, feeding tubes, trouble forming words and uncontrollable anger, chordoma survivor Hank Lech just wanted to be back to "normal," not his "new normal." Hank Lech's anger grew day by day after his chordoma diagnosis and treatment. Learn how he came to cope with life after cancer.
Falling off the edge of a cliff
At 20 months out from her last chemotherapy treatment and 15 months from her last medical procedure for uterine cancer, Mary Kurtz knew she was a cancer survivor in name. But she struggled to move forward. Read her story.
My metastatic breast cancer recurrence: "You first" and other lessons
After 15 years in remission, Jody Schoger's cancer returned. Though she's still struggling with acceptance, she's noticed several recurring themes about living with stage 4 cancer. Find out what she's discovered.
Here are some of our best stories from patients and survivors in 2013.
Getting married after cancer: Guilt is part of the diagnosis
Before proposing to his girlfriend, Justin Ozuna couldn't stop thinking about how the proposal would align with his cancer diagnosis and his uncertain future. Find out how the couple accepted their new reality.
Bodybuilding: How a breast cancer survivor regained confidenceAfter a breast cancer diagnosis, double mastectomy and reconstructive surgery, Sonia Byrd decided to retake control of her body and life. So, she signed up for a bodybuilding fitness contest. Read her story.
Support groups: A cancer patient's best friendLike many cancer patients, Mike Snyder originally shrugged off his doctor's suggestion to join a support group. But after his bone cancer returned, a co-worker invited him to join one. Learn how this experienced changed him.
A melanoma survivor's take on tanning beds
After tanning three times a week starting at the age of 15, Cheri Huber was diagnosed with melanoma in her mid-30s. Now cancer-free and a mom of two young girls, she's a strong supporter of a new Texas law that prohibits minors from using tanning salons. Read her story.
After chordoma: Coping with anger and change
After two surgeries, feeding tubes, trouble forming words and uncontrollable anger, chordoma survivor Hank Lech just wanted to be back to "normal," not his "new normal." Hank Lech's anger grew day by day after his chordoma diagnosis and treatment. Learn how he came to cope with life after cancer.
Falling off the edge of a cliff
At 20 months out from her last chemotherapy treatment and 15 months from her last medical procedure for uterine cancer, Mary Kurtz knew she was a cancer survivor in name. But she struggled to move forward. Read her story.
My metastatic breast cancer recurrence: "You first" and other lessons
After 15 years in remission, Jody Schoger's cancer returned. Though she's still struggling with acceptance, she's noticed several recurring themes about living with stage 4 cancer. Find out what she's discovered.
Location:Louisville, KY, USA
Tuesday, December 10, 2013
Jill's Story: The Light That Shines
From Jilly Beans Barking Bones
Jill Brzezinski Conley was diagnosed with breast cancer one day before her 32nd birthday in July of 2009. Her journey began with the most progressive form of treatment available. Contrary to what most think, the younger one is, the more aggressive breast cancer can be. Jill was a newlywed, only married 7 months, and had just moved to Louisville, Kentucky from Las Vegas, Nevada to be with the love of her life, Barton.
After 16 rounds of grueling chemo, 33 radiation treatments, a double mastectomy, and several surgeries to remove a severely infected implant, she kept her wit, compelling determination with no room for self pity, while frequently making light of her serious condition. All the while her devoted dog, Honeybear, kept close with a watchful eye while she was home recovering.
After 2 1/2 years of treatment and a short remission, in January of 2012 the “beast was back.” The cancer had now taken residence in her bones, settling in behind her rib cage. A new regimen of treatment began, but Jill accepted the recurrence with compelling strength, in order to overcome the pain and sorrowful thoughts that accompany metastatic cancer. She spent endless days comforted by both Honeybear and Hope, her rescued cat, along with her thoughts about how she could make lemons out of lemonade. Jill did not want to be dying with cancer, but rather living with cancer. Her aching “bones” had a purpose!
Jill grew up in Michigan with strong work ethics and had worked since the age of 16. Because of her ongoing treatment she reluctantly had to leave her job as a leasing consultant and soon became bored and restless staying home. She decided she not only needed to bring in some extra money to help with the mounting medical bills, but also to promote a message about the importance of dog therapy during illness. Thus, Jillybean’s Barking Bones was born!
Jillybean’s Barking Bones, Dog Treats with a Purpose
Distributed from Louisville, Kentucky, Jillybean’s Barking Bones are all natural dog treats made with an extra helping of love! There are no additives or preservatives – only pure, healthy, natural ingredients. Because of Jill’s commitment to helping others, a portion of all Barking Bones Dog Treats sales are donated to the Good Dog Foundation, a charitable organization that provides therapy dog services to people in health care, social service, educational and community facilities, as well as at disaster sites around the country.
Jill’s Wish
Jill understands the burden of dealing with cancer and the toll it can take on patients and their families. That is why she has started Jill’s Wish. The mission of Jill’s Wish is to help minimize the financial struggle for cancer patients and their families, allowing them the resources and peace of mind to focus on recovery.
Jill Brzezinski Conley was diagnosed with breast cancer one day before her 32nd birthday in July of 2009. Her journey began with the most progressive form of treatment available. Contrary to what most think, the younger one is, the more aggressive breast cancer can be. Jill was a newlywed, only married 7 months, and had just moved to Louisville, Kentucky from Las Vegas, Nevada to be with the love of her life, Barton.
After 16 rounds of grueling chemo, 33 radiation treatments, a double mastectomy, and several surgeries to remove a severely infected implant, she kept her wit, compelling determination with no room for self pity, while frequently making light of her serious condition. All the while her devoted dog, Honeybear, kept close with a watchful eye while she was home recovering.
After 2 1/2 years of treatment and a short remission, in January of 2012 the “beast was back.” The cancer had now taken residence in her bones, settling in behind her rib cage. A new regimen of treatment began, but Jill accepted the recurrence with compelling strength, in order to overcome the pain and sorrowful thoughts that accompany metastatic cancer. She spent endless days comforted by both Honeybear and Hope, her rescued cat, along with her thoughts about how she could make lemons out of lemonade. Jill did not want to be dying with cancer, but rather living with cancer. Her aching “bones” had a purpose!
Jill grew up in Michigan with strong work ethics and had worked since the age of 16. Because of her ongoing treatment she reluctantly had to leave her job as a leasing consultant and soon became bored and restless staying home. She decided she not only needed to bring in some extra money to help with the mounting medical bills, but also to promote a message about the importance of dog therapy during illness. Thus, Jillybean’s Barking Bones was born!
Jillybean’s Barking Bones, Dog Treats with a Purpose
Distributed from Louisville, Kentucky, Jillybean’s Barking Bones are all natural dog treats made with an extra helping of love! There are no additives or preservatives – only pure, healthy, natural ingredients. Because of Jill’s commitment to helping others, a portion of all Barking Bones Dog Treats sales are donated to the Good Dog Foundation, a charitable organization that provides therapy dog services to people in health care, social service, educational and community facilities, as well as at disaster sites around the country.
Jill’s Wish
Jill understands the burden of dealing with cancer and the toll it can take on patients and their families. That is why she has started Jill’s Wish. The mission of Jill’s Wish is to help minimize the financial struggle for cancer patients and their families, allowing them the resources and peace of mind to focus on recovery.
Location:Louisville, KY USA
Monday, December 9, 2013
Inspiration: "I try to enjoy everything I can, when I can"
An article from Cancerwise about overcoming:
At first, Mai was devastated. For five years, Mai had provided hope for other pancreatic cancer patients as a volunteer for the Anderson Network, a support group that pairs new patients with survivors who share their same cancer diagnosis. But after her recurrence, she wasn't so sure she could still be a voice of hope.
Over time, though, Mai has come to realize that despite her pancreatic cancer recurrence, the way she continues to live her life remains an inspiration to her fellow patients. "I enjoy life to the maximum," she says. "That's what I do. I try to enjoy everything I can, when I can."
Read the entire article here...
 |
"Cancer has taught me to take a breath and deal with what I've been given. It's taught me that faith and a positive attitude are huge, not only in getting though cancer, but also in life," she says. "Life is difficult. But life is worth every difficulty."On the fifth anniversary of the day she entered remission, Mai Salem was told her pancreatic cancer had returned.
At first, Mai was devastated. For five years, Mai had provided hope for other pancreatic cancer patients as a volunteer for the Anderson Network, a support group that pairs new patients with survivors who share their same cancer diagnosis. But after her recurrence, she wasn't so sure she could still be a voice of hope.
Over time, though, Mai has come to realize that despite her pancreatic cancer recurrence, the way she continues to live her life remains an inspiration to her fellow patients. "I enjoy life to the maximum," she says. "That's what I do. I try to enjoy everything I can, when I can."
Read the entire article here...
Little Drummer Boy by Pentatonix
Pentatonix, an a cappella music group consisting of five members, posted a cover of “Little Drummer Boy” on YouTube on Nov. 25. In less than a week, it has become a viral sensation.
Since uploading the music video to YouTube, the song has enjoyed nearly fifteen million views. You can download the group’s Christmas album on iTunes.
Since uploading the music video to YouTube, the song has enjoyed nearly fifteen million views. You can download the group’s Christmas album on iTunes.
Friday, December 6, 2013
Update #52 • God Is Good All The Time!
Mary Jo is now on Day+214 since her transplant on May 6th. She is doing great. We got the Christmas tree out, and are decorating it this morning. The holidays are so much better this year than 2012 when she was going through R-CHOP and R-DHAP chemo treatments here in Louisville. God is good - all the time!
Billy, Mary Jo's nephew, whose Chronic Lymphocytic Luekemia (CLL) with 17p deletion has been transformed into Diffuse Large Cell Lymphoma by Richter's Syndrome(RS) was supposed to have his last round of R-EPOCH chemo at Vanderbilt starting this past Wednesday.
We took Billy to Nashville early Wednesday morning for his 9 AM appointment for blood labs and meeting with his oncologist there. Nashville is about a 2 1/2-3 hour drive from Louisville. As is our routine, we ate breakfast with Billy at the Panera Bread near the Vanderbilt campus then went over to the hospital.
Billy got everything taken care of with the oncologist, by around lunch time. So, he we went to admitting to get him checked in the hospital. They said that many patients were checking out, and they would page him when a room was available.
So, we went to the hospital cafeteria for lunch.
After eating, we went back to admitting. They said they would have a room available in a couple of hours. Mary Jo and I sat with Billy until around 3 PM in admitting waiting area. We didn't really want to get stuck in rush hour traffic.
So, we drove back to Louisville arriving around 6 PM. Billy called right after we got home. He was still waiting for a room, and, understandingly so, getting very frustrated about the whole room situation.
A friend of Billy's has been taking Billy for his previous five treatments at Vanderbilt. But, he couldn't take him Wednesday because he was taking his wife, who has multiple myeloma, to the University of Arkansas Cancer Center in Little Rock.
At 9:30 PM (CT), Billy's friend was passing through Nashville on his way back to Louisville from Little Rock, and called Billy to see how he was doing.
By this time, Billy was beside himself. He still was not in a room. Billy's friend asked him, if he wanted to pick him and bring him home. Billy told the admitting people that he was tired of waiting for a room, and was heading back to Louisville.
In September, Vanderbilt Medical Center laid off around 1,000 employees. We had overheard several patients during the day talking about how the length of time to get test results,etc. had increased considerably since the layoffs. Arriving at the hospital at 9 AM, and not having a room by 10 PM is totally ridiculous.
The doctors and nurses at Vanderbilt do wonderful work. The patient care coordinator at Vanderbilt and Billy's oncologist called him yesterday to apologize for what went on Wednesday. If the Vanderbilt Medical Center wants to maintain their reputation as one of the nation's leading research and treatment centers something needs to be fixed.
But, after saying all of that, I think it was Divine Providence that the delay caused Billy to not start his treatment on Wednesday as planned, and his friend to be driving through Nashville at the precise time he needed a ride back to Louisville.
We got a call yesterday from Billy's family who live in Lexington, KY informing us that Billy's mom, who is fighting peritoneal cancer, had taken a turn for the worse. She was in great pain and was having trouble swallowing and talking.
Billy drove to Lexington yesterday to spend some quality time with his mom and his family there before he heads back to Nashville on Monday for his last treatment. GOD IS GOOD - ALL THE TIME!
Please keep Billy, his mom, Linda and Mary Jo in your prayers.
We are in the midst of a Winter Storm Cleon here in Louisville. We are currently having freezing rain. It is supposed to change to sleet and heavy snow soon at a rate of 1-2" per hour.
The forecast is for 8-12" in the area before it stops early Saturday morning.
Then, Winter Storm Dion is supposed to roll through Saturday night and Sunday with a major ice storm in the area causing massive power outages. Please pray that this doesn't happen, and we all survive this onslaught from mother nature. The low temperatures next week are supposed to be near zero. I would rather have 2' of snow than the ice.
Whatever the case, GOD IS GOOD - ALL THE TIME!!!
Merry Christmas and Happy New Year.
Billy, Mary Jo's nephew, whose Chronic Lymphocytic Luekemia (CLL) with 17p deletion has been transformed into Diffuse Large Cell Lymphoma by Richter's Syndrome(RS) was supposed to have his last round of R-EPOCH chemo at Vanderbilt starting this past Wednesday.
We took Billy to Nashville early Wednesday morning for his 9 AM appointment for blood labs and meeting with his oncologist there. Nashville is about a 2 1/2-3 hour drive from Louisville. As is our routine, we ate breakfast with Billy at the Panera Bread near the Vanderbilt campus then went over to the hospital.
Billy got everything taken care of with the oncologist, by around lunch time. So, he we went to admitting to get him checked in the hospital. They said that many patients were checking out, and they would page him when a room was available.
So, we went to the hospital cafeteria for lunch.
After eating, we went back to admitting. They said they would have a room available in a couple of hours. Mary Jo and I sat with Billy until around 3 PM in admitting waiting area. We didn't really want to get stuck in rush hour traffic.
So, we drove back to Louisville arriving around 6 PM. Billy called right after we got home. He was still waiting for a room, and, understandingly so, getting very frustrated about the whole room situation.
A friend of Billy's has been taking Billy for his previous five treatments at Vanderbilt. But, he couldn't take him Wednesday because he was taking his wife, who has multiple myeloma, to the University of Arkansas Cancer Center in Little Rock.
At 9:30 PM (CT), Billy's friend was passing through Nashville on his way back to Louisville from Little Rock, and called Billy to see how he was doing.
By this time, Billy was beside himself. He still was not in a room. Billy's friend asked him, if he wanted to pick him and bring him home. Billy told the admitting people that he was tired of waiting for a room, and was heading back to Louisville.
In September, Vanderbilt Medical Center laid off around 1,000 employees. We had overheard several patients during the day talking about how the length of time to get test results,etc. had increased considerably since the layoffs. Arriving at the hospital at 9 AM, and not having a room by 10 PM is totally ridiculous.
The doctors and nurses at Vanderbilt do wonderful work. The patient care coordinator at Vanderbilt and Billy's oncologist called him yesterday to apologize for what went on Wednesday. If the Vanderbilt Medical Center wants to maintain their reputation as one of the nation's leading research and treatment centers something needs to be fixed.
But, after saying all of that, I think it was Divine Providence that the delay caused Billy to not start his treatment on Wednesday as planned, and his friend to be driving through Nashville at the precise time he needed a ride back to Louisville.
We got a call yesterday from Billy's family who live in Lexington, KY informing us that Billy's mom, who is fighting peritoneal cancer, had taken a turn for the worse. She was in great pain and was having trouble swallowing and talking.
Billy drove to Lexington yesterday to spend some quality time with his mom and his family there before he heads back to Nashville on Monday for his last treatment. GOD IS GOOD - ALL THE TIME!
Please keep Billy, his mom, Linda and Mary Jo in your prayers.
We are in the midst of a Winter Storm Cleon here in Louisville. We are currently having freezing rain. It is supposed to change to sleet and heavy snow soon at a rate of 1-2" per hour.
The forecast is for 8-12" in the area before it stops early Saturday morning.
Then, Winter Storm Dion is supposed to roll through Saturday night and Sunday with a major ice storm in the area causing massive power outages. Please pray that this doesn't happen, and we all survive this onslaught from mother nature. The low temperatures next week are supposed to be near zero. I would rather have 2' of snow than the ice.
Whatever the case, GOD IS GOOD - ALL THE TIME!!!
Merry Christmas and Happy New Year.
Update #52 • God Is Good All The Time!
Mary Jo is now on Day+214 since her transplant on May 6th. She is doing
great. We got the Christmas tree out, and are decorating it this
morning. The holidays are so much better this year than 2012
when she was going through R-CHOP and R-DHAP chemo treatments here in
Louisville. God is good - all the time!
Billy, Mary Jo's nephew, whose Chronic Lymphocytic Luekemia (CLL) with 17p deletion has been transformed into Diffuse Large Cell Lymphoma by Richter's Syndrome(RS) was supposed to have his last round of R-EPOCH chemo at Vanderbilt starting this past Wednesday.
We took Billy to Nashville early Wednesday morning for his 9 AM appointment for blood labs and meeting with his oncologist there. Nashville is about a 2 1/2-3 hour drive from Louisville. As is our routine, we ate breakfast with Billy at the Panera Bread near the Vanderbilt campus then went over to the hospital.
Billy got everything taken care of with the oncologist, by around lunch time. So, he we went to admitting to get him checked in the hospital. They said that many patients were checking out, and they would page him when a room was available.
So, we went to the hospital cafeteria for lunch.
After eating, we went back to admitting. They said they would have a room available in a couple of hours. Mary Jo and I sat with Billy until around 3 PM in admitting waiting area. We didn't really want to get stuck in rush hour traffic.
So, we drove back to Louisville arriving around 6 PM. Billy called right after we got home. He was still waiting for a room, and, understandingly so, getting very frustrated about the whole room situation.
A friend of Billy's has been taking Billy for his previous five treatments at Vanderbilt. But, he couldn't take him Wednesday because he was taking his wife, who has multiple myeloma, to the University of Arkansas Cancer Center in Little Rock.
At 9:30 PM (CT), Billy's friend was passing through Nashville on his way back to Louisville from Little Rock, and called Billy to see how he was doing.
By this time, Billy was beside himself. He still was not in a room. Billy's friend asked him, if he wanted to pick him and bring him home. Billy told the admitting people that he was tired of waiting for a room, and was heading back to Louisville.
In September, Vanderbilt Medical Center laid off around 1,000 employees. We had overheard several patients during the day talking about how the length of time to get test results,etc. had increased considerably since the layoffs. Arriving at the hospital at 9 AM, and not having a room by 10 PM is totally ridiculous.
The doctors and nurses at Vanderbilt do wonderful work. The patient care coordinator at Vanderbilt and Billy's oncologist called him yesterday to apologize for what went on Wednesday. If the Vanderbilt Medical Center wants to maintain their reputation as one of the nation's leading research and treatment centers something needs to be fixed.
But, after saying all of that, I think it was Divine Providence that the delay caused Billy to not start his treatment on Wednesday as planned, and his friend to be driving through Nashville at the precise time he needed a ride back to Louisville.
We got a call yesterday from Billy's family who live in Lexington, KY informing us that Billy's mom, who is fighting peritoneal cancer, had taken a turn for the worse. She was in great pain and was having trouble swallowing and talking.
Billy drove to Lexington yesterday to spend some quality time with his mom and his family there before he heads back to Nashville on Monday for his last treatment. GOD IS GOOD - ALL THE TIME!
Please keep Billy, his mom, Linda and Mary Jo in your prayers.
We are in the midst of a Winter Storm Cleon here in Louisville. We are currently having freezing rain. It is supposed to change to sleet and heavy snow soon at a rate of 1-2" per hour.
The forecast is for 8-12" in the area before it stops early Saturday morning.
Then, Winter Storm Dion is supposed to roll through Saturday night and Sunday with a major ice storm in the area causing massive power outages. Please pray that this doesn't happen, and we all survive this onslaught from mother nature. The low temperatures next week are supposed to be near zero. I would rather have 2' of snow than the ice.
Whatever the case, GOD IS GOOD - ALL THE TIME!!!
Merry Christmas and Happy New Year.
Billy, Mary Jo's nephew, whose Chronic Lymphocytic Luekemia (CLL) with 17p deletion has been transformed into Diffuse Large Cell Lymphoma by Richter's Syndrome(RS) was supposed to have his last round of R-EPOCH chemo at Vanderbilt starting this past Wednesday.
We took Billy to Nashville early Wednesday morning for his 9 AM appointment for blood labs and meeting with his oncologist there. Nashville is about a 2 1/2-3 hour drive from Louisville. As is our routine, we ate breakfast with Billy at the Panera Bread near the Vanderbilt campus then went over to the hospital.
Billy got everything taken care of with the oncologist, by around lunch time. So, he we went to admitting to get him checked in the hospital. They said that many patients were checking out, and they would page him when a room was available.
So, we went to the hospital cafeteria for lunch.
After eating, we went back to admitting. They said they would have a room available in a couple of hours. Mary Jo and I sat with Billy until around 3 PM in admitting waiting area. We didn't really want to get stuck in rush hour traffic.
So, we drove back to Louisville arriving around 6 PM. Billy called right after we got home. He was still waiting for a room, and, understandingly so, getting very frustrated about the whole room situation.
A friend of Billy's has been taking Billy for his previous five treatments at Vanderbilt. But, he couldn't take him Wednesday because he was taking his wife, who has multiple myeloma, to the University of Arkansas Cancer Center in Little Rock.
At 9:30 PM (CT), Billy's friend was passing through Nashville on his way back to Louisville from Little Rock, and called Billy to see how he was doing.
By this time, Billy was beside himself. He still was not in a room. Billy's friend asked him, if he wanted to pick him and bring him home. Billy told the admitting people that he was tired of waiting for a room, and was heading back to Louisville.
In September, Vanderbilt Medical Center laid off around 1,000 employees. We had overheard several patients during the day talking about how the length of time to get test results,etc. had increased considerably since the layoffs. Arriving at the hospital at 9 AM, and not having a room by 10 PM is totally ridiculous.
The doctors and nurses at Vanderbilt do wonderful work. The patient care coordinator at Vanderbilt and Billy's oncologist called him yesterday to apologize for what went on Wednesday. If the Vanderbilt Medical Center wants to maintain their reputation as one of the nation's leading research and treatment centers something needs to be fixed.
But, after saying all of that, I think it was Divine Providence that the delay caused Billy to not start his treatment on Wednesday as planned, and his friend to be driving through Nashville at the precise time he needed a ride back to Louisville.
We got a call yesterday from Billy's family who live in Lexington, KY informing us that Billy's mom, who is fighting peritoneal cancer, had taken a turn for the worse. She was in great pain and was having trouble swallowing and talking.
Billy drove to Lexington yesterday to spend some quality time with his mom and his family there before he heads back to Nashville on Monday for his last treatment. GOD IS GOOD - ALL THE TIME!
Please keep Billy, his mom, Linda and Mary Jo in your prayers.
We are in the midst of a Winter Storm Cleon here in Louisville. We are currently having freezing rain. It is supposed to change to sleet and heavy snow soon at a rate of 1-2" per hour.
The forecast is for 8-12" in the area before it stops early Saturday morning.
Then, Winter Storm Dion is supposed to roll through Saturday night and Sunday with a major ice storm in the area causing massive power outages. Please pray that this doesn't happen, and we all survive this onslaught from mother nature. The low temperatures next week are supposed to be near zero. I would rather have 2' of snow than the ice.
Whatever the case, GOD IS GOOD - ALL THE TIME!!!
Merry Christmas and Happy New Year.
Tuesday, November 26, 2013
Olivia Wise, The Teen Who "Kept Roaring" Dies
(CNN) -- Olivia Wise, a teenager who refused to let an inoperable brain tumor kill her spirit, died Monday.
Olivia gained fame in the last weeks of her 16-year-long life when a Katy Perry song she recorded in a Toronto studio in September became a viral hit online.
"She died peacefully in her home surrounded by the extraordinary love of her family," a family statement sent to CNN said.
The teenager said that she didn't want people crying at her funeral, but that they should celebrate her life, her mother wrote in a letter to CNN.
Her version of Perry's hit "Roar," which she recorded in September after learning there were no more treatments available, drew the attention of Perry after it was published on YouTube in October.
"I was very moved and you sounded great," Perry told her in a video posted on YouTube. "I love you. A lot of people love you and that's why your video got to me. It moved everybody that saw it."
Perry concluded with: "Keep roaring!"
The international attention drew more than a million viewers to Olivia's song and helped raise $77,000 for the Liv Wise Fund that was started in her name in support of brain tumor research.
The video shows OIivia sitting in a wheelchair in the middle of the studio, singing softly at first and struggling with her breaths.
"'Cause I am a champion, and you're gonna hear me roar."
Her energy grows and she smiles as she sings "I got the eye of a tiger, a fighter, dancing through the fire."
"Olivia is a fighter and has gone through the fire," her cousin wrote in the post under the video posting on YouTube. "In fact, she was going through the fire while she recorded this song, but you wouldn't know it, because she was dancing right through it."
Her family posted another song video on YouTube just days before Olivia's death. She wrote "Simple Girl" -- a song about how she wanted to live life -- when she was 11. The only time she sang it was on September 6, during the same session in which she recorded "Roar."
"In many ways, Olivia has lived a shortened, but full life," her mother wrote in the letter to CNN.
Wise was diagnosed with a very aggressive form of brain cancer in January 2012 after she suffered a seizure.
She rarely complained about the grave prognosis, her mother said. "Every day, she wished for a cure, and rarely succumbed to negative thoughts."
"To tell the truth, her diagnosis didn't change her personality," her mom said. "It only enhanced it. She took the news in a mature, reasonable, responsible way. ... Even in the most difficult moments, she managed to bring laughter and friendship to all that were caring for her."
Our hearts and prayers go out to Olivia's family and friends.
Olivia gained fame in the last weeks of her 16-year-long life when a Katy Perry song she recorded in a Toronto studio in September became a viral hit online.
"She died peacefully in her home surrounded by the extraordinary love of her family," a family statement sent to CNN said.
The teenager said that she didn't want people crying at her funeral, but that they should celebrate her life, her mother wrote in a letter to CNN.
Her version of Perry's hit "Roar," which she recorded in September after learning there were no more treatments available, drew the attention of Perry after it was published on YouTube in October.
"I was very moved and you sounded great," Perry told her in a video posted on YouTube. "I love you. A lot of people love you and that's why your video got to me. It moved everybody that saw it."
Perry concluded with: "Keep roaring!"
The international attention drew more than a million viewers to Olivia's song and helped raise $77,000 for the Liv Wise Fund that was started in her name in support of brain tumor research.
The video shows OIivia sitting in a wheelchair in the middle of the studio, singing softly at first and struggling with her breaths.
"'Cause I am a champion, and you're gonna hear me roar."
Her energy grows and she smiles as she sings "I got the eye of a tiger, a fighter, dancing through the fire."
"Olivia is a fighter and has gone through the fire," her cousin wrote in the post under the video posting on YouTube. "In fact, she was going through the fire while she recorded this song, but you wouldn't know it, because she was dancing right through it."
Her family posted another song video on YouTube just days before Olivia's death. She wrote "Simple Girl" -- a song about how she wanted to live life -- when she was 11. The only time she sang it was on September 6, during the same session in which she recorded "Roar."
"In many ways, Olivia has lived a shortened, but full life," her mother wrote in the letter to CNN.
Wise was diagnosed with a very aggressive form of brain cancer in January 2012 after she suffered a seizure.
She rarely complained about the grave prognosis, her mother said. "Every day, she wished for a cure, and rarely succumbed to negative thoughts."
"To tell the truth, her diagnosis didn't change her personality," her mom said. "It only enhanced it. She took the news in a mature, reasonable, responsible way. ... Even in the most difficult moments, she managed to bring laughter and friendship to all that were caring for her."
Our hearts and prayers go out to Olivia's family and friends.
Monday, November 25, 2013
Friday, November 22, 2013
Tuesday, November 19, 2013
Middle Schoolers Teach All Of Us A Lesson
While the NFL is dealing with the issue of bullying in the Miami Dolphins locker room, a middle school football team in Michigan has a deeper understanding of the game that pros may never reach.
The Olivet Eagles football team at Olivet Middle School in Olivet, Michigan, decided to run a play and intentionally not score, all without their coaches knowing.
The football team planned the play for weeks, all so they could set up a very special moment for a special boy.
Keith Orr is a special needs child, and his buddies on the football team decided to give him the chance to run for a touchdown.
Sheridan Hedrick, a player on the team, would’ve easily scored a touchdown, but he instead took a knee on the 1-yard line, much to the dismay of the crowd.
That was until the next play happened: the “Keith Special.”
The ball was hiked and immediately handed to Keith, who ran forward as his teammates protected him from the oncoming defense. Keith scored without a scratch.
The boys did much more than help Keith score a touchdown; they brought a community together.
“Yes I’m excited and happy that he made a touchdown, but what have these boys showed this community? That’s what gets to me,” said Keith’s mother, Carrie Orr, to WILX. “They’ve got his back. And he knows it.”
We can all learn a lot from the boys on the Olivet Eagles, as they have shown a certain sense of humility and understanding many of us adults struggle with.
The Olivet Eagles football team at Olivet Middle School in Olivet, Michigan, decided to run a play and intentionally not score, all without their coaches knowing.
The football team planned the play for weeks, all so they could set up a very special moment for a special boy.
Keith Orr is a special needs child, and his buddies on the football team decided to give him the chance to run for a touchdown.
Sheridan Hedrick, a player on the team, would’ve easily scored a touchdown, but he instead took a knee on the 1-yard line, much to the dismay of the crowd.
That was until the next play happened: the “Keith Special.”
The ball was hiked and immediately handed to Keith, who ran forward as his teammates protected him from the oncoming defense. Keith scored without a scratch.
The boys did much more than help Keith score a touchdown; they brought a community together.
“Yes I’m excited and happy that he made a touchdown, but what have these boys showed this community? That’s what gets to me,” said Keith’s mother, Carrie Orr, to WILX. “They’ve got his back. And he knows it.”
We can all learn a lot from the boys on the Olivet Eagles, as they have shown a certain sense of humility and understanding many of us adults struggle with.
Prayers requested: Super-Typhoon Haiyan Nears The Philipines
A neighbor's son teaches English in the Philipines. Please keep him and all of the people there in your prayers.
</>
</>
Wednesday, November 6, 2013
Vanderbilt Opens Cancer Targeted Therapies Center
Taking part in last week’s ribbon cutting for Vanderbilt-Ingram Cancer Center’s new Center for Cancer Targeted Therapies were, from left, C. Wright Pinson, MBA, M.D., Carlos L. Arteaga, M.D., Orrin Ingram and Jennifer Pietenpol, Ph.D. (photo by Susan Urmy)
Vanderbilt-Ingram Cancer Center leaders formally dedicated the space for the new Center for Cancer Targeted Therapies (CCTT), located in the Infusion Center on the second floor of The Vanderbilt Clinic, at a special ribbon-cutting held during last week’s fall meeting of the Cancer Center’s Board of Overseers.
Led by director Carlos L. Arteaga, M.D., professor of Medicine and Cancer Biology and associate for Clinical Research, the CCTT is an extension of the Cancer Center’s expertise in personalized cancer medicine, Phase I trials and non-invasive imaging.
Through the VICC Personalized Cancer Medicine Initiative (PCMI), investigators focus on genomic signatures in a patient’s tumor and use that information to match the patient to a targeted therapy.
Patients with various forms of lung, breast and colorectal cancer, along with melanoma, are already being screened for genomic markers that help physicians decide on the best course of treatment.
The CCTT leverages the strengths of the PCMI, along with the VICC Phase I Program, led by Jordan Berlin, M.D., Ingram Professor of Cancer Research. Phase I clinical trials are designed to test new compounds in humans to determine potential doses and toxicities.
The new CCTT will also harness the capabilities of the Vanderbilt University Institute of Imaging Sciences and the Division of Interventional Oncology in the Department of Radiology and Radiological Sciences.
The goal of the new initiative is to streamline drug development efforts at VICC using leading-edge molecular profiling of tumors and novel imaging approaches that predict drug action and efficacy. This integration will help VICC expand the center’s early phase clinical trials program and contribute to faster approval of new targeted drugs and combination therapies for cancer patients.
“The creation of this new center is a testament to the continuous commitment of our institution to the development of new and effective anti-cancer therapies,” said Arteaga, also the Donna S. Hall Professor of Breast Cancer Research.
“As we dedicate this new center, we are also celebrating the 20th anniversary of the Cancer Center,” said Jennifer Pietenpol, Ph.D., director of VICC. “The CCTT is the next logical step in the growth of the Cancer Center and it marks another defining moment in our efforts to provide the best therapies for our patients.”
The CCTT also will create more research and training opportunities for basic, translational and clinical investigators.
Thursday, October 31, 2013
Tuesday, October 29, 2013
Don’t Give Up Hope
Don’t Give Up Hope
This world just keeps on getting crazier and crazier everyday
You’re so afraid
Sometimes it feels like it’s chasing your sanity away
And you start to break
Let me help you find your way
Don’t give up faith
Don’t give up hope
There’s always something better
Waiting around the corner
Don’t give up now
Please, don’t let go
What can feel like the ending
Could just be the beginning
Don’t give up hope
Your life is spinning like a rocket that’s gone out of control
And you’ve let go
You’re slowly losing your confidence, you’re a wounded soul
But I hope you know
I can help you find your way
Don’t give up faith
Don’t give up hope
There’s always something better
Waiting around the corner
Don’t give up now
Please, don’t let go
What can seem like the ending
Could just be the beginning
Don’t give up hope
Don’t give up hope now
Don’t turn around
Keep on moving
Find your faith
You’ll be doing all right now
Don’t look back
Keep on moving
Find your faith
And you’ll be doing all right now
Don’t look back
Keep on moving
Find your faith
And you’ll be doing all right now
Don’t give up faith
Don’t give up hope
There’s always something better
Waiting around the corner
Don’t give up now
Please, don’t let go
What can seem like the ending
Could just be the beginning
Saturday, October 26, 2013
Updated: Children's Hospital Katy Perry Inspirational Video
Children's Hospital Katy Perry Video is Heartwarming Moving Inspirational Children's Hospital At Dartmouth-Hitchcock Medical Center Performs Katy Perry's 'Roar' (VIDEO)
This week, Katy Perry released her new album, 'Prism,' but the pop star may be getting out-shined.
That's because patients, parents, doctors, nurses and even administrators at the Children's Hospital at Dartmouth-Hitchcock released their own inspiring cover of Perry's hit single, "Roar" -- and they've got us all choked up.
The hospital in Lebanon, N.H., made the video for its annual CHaD HERO Half Marathon & Ripcord 5K, according to its Facebook page.
The heartwarming clip features grade-A lip synching, dancing from people of all ages and, of course, lots of roaring.
"Please share this video directly from the kids and staff," the hospital wrote on Facebook. "It means a lot to the families and CHaD community who work to keep these kids roaring."
This week, Katy Perry released her new album, 'Prism,' but the pop star may be getting out-shined.
That's because patients, parents, doctors, nurses and even administrators at the Children's Hospital at Dartmouth-Hitchcock released their own inspiring cover of Perry's hit single, "Roar" -- and they've got us all choked up.
The hospital in Lebanon, N.H., made the video for its annual CHaD HERO Half Marathon & Ripcord 5K, according to its Facebook page.
The heartwarming clip features grade-A lip synching, dancing from people of all ages and, of course, lots of roaring.
"Please share this video directly from the kids and staff," the hospital wrote on Facebook. "It means a lot to the families and CHaD community who work to keep these kids roaring."
What A Difference A Year Makes...Thanks Be To God!!!
Mary Jo had her first chemo treatment today. Everything went well. She did have some of the side effects expected from the most potent of the five chemo medicines. She has been pretty much out of it since they gave her a dose of Benadryl intravenenously to counter act some of the side effects from the chemo medicines. The nurse said what she had is much more potent than what you buy over the counter. Thanks for your prayers and support, Gerry
Friday, October 25, 2013
Epic Halloween Prank In Louisville Park By Tom Mabe
Joggers and walkers in Louisville, Kentucky, were left running scared after a prankster spooked them with a remote-controlled skeleton.
With Halloween just around the corner, Louisville joker Tom Mabe used his squawking Flying Reaper to swoop down and stalk his victims.
‘We have had a lot of fun making this. It’s taken some work to make it happen, but it’s great fun,’ he explained.
‘It flies with the help of a remote control helicopter but you rig it up in a really brilliant way. It has to be quiet so people don’t hear it.’
He added: ‘Wherever there are people, we will go. We have since managed to make its eyes glow red and we are going to go out at night and scare people.
‘The best bit is when you sneak up on people. We fly it about 200ft in the air and then drop it down so it’s right behind them.’
A video of the puppet in action has racked up more than 150,000 hits on YouTube in less than 24 hours.
Sunday, October 20, 2013
Clinical Advances in Mantle Cell Lymphoma
“Mantle cell lymphoma is a relatively uncommon form of non-Hodgkin lymphoma, and it has been treated traditionally with combination chemotherapy, which achieves a high response rate—but the responses have not tended to be durable, and the disease has remained incurable,” said Bruce D. Cheson, MD, professor of Medicine, deputy chief of Hematology/Oncology, and head of Hematology at the Lombardi Comprehensive Cancer Center, Georgetown University Medical Center, Washington, DC. Many of the chemotherapy approaches today are very aggressive. One of the problems with an aggressive strategy is that, according to Cheson, “Patients with mantle cell lymphoma present with a median age in their 60s, and they can’t tolerate some of the aggressive regimens very well. Less-intensive regimens like R-CHOP are not terribly effective. So now we have the opportunity to have well-tolerated, oral, highly effective therapies for a disease for which previous treatments have been very intensive, very aggressive, and suboptimal.”
Read entire article from Targeted Oncology here
Ari M. Melnick, MD, on Emerging Therapies
The opportunity of which Cheson speaks is with newer targeted therapies. “The goal is to reduce the intensity of therapy,” he said. “The concept ‘more is better’ is not valid. ‘Different is better’ is the operative hypothesis. We’re going away from aggressive regimens like hyper-CVAD and stem cell transplants, and moving in the direction to taking some fairly innocuous pills. It is a major seismic shift that is occurring now in the treatment of mantle cell lymphoma, and it’s not that far away. Within a matter of just a couple of years, I expect that these drugs will become an important part of the treatment of mantle cell lymphoma, replacing very aggressive, intensive regimens.”
Melnick is the Gebroe Professor of Hematology/Oncology at the Weill Cornell Medical College.
3 Sisters Have Last-Minute Joint Wedding So Mom With Cancer Can Attend - She Dies 12 Hours Later
From Daily Mail Online
- Sarah, Kaylee and Jodie Swales - aged 19, 21 and 22 - all married their fiances in a joint ceremony in Snellville, Georgia on Sunday
- They had planned to marry at the end of the month but brought the wedding forward after their mother's condition worsened
- Becky Swales, who was diagnosed with breast cancer 4 years ago, died on Monday - just hours after she saw her daughters walk down the aisle
A cancer-stricken mother has passed away just 12 hours after her three daughters held a last-minute joint wedding so that she could attend.
Sarah, Kaylee and Jodie Swales - aged 19, 21 and 22 - from Snellville, Georgia learned last week that their mother's breast cancer had spread to her liver and there was nothing doctors could do.
The sisters had planned to marry on October 26 but as their mother's condition worsened, they decided to wed on Sunday afternoon to fulfill her final wish of seeing them walk down the aisle.
Bittersweet: Sisters Sarah, Kaylee and Jodie Swales married in a triple wedding on Sunday as they wanted their mother, who had terminal cancer, to see them walk down the aisle. She passed away hours later
Joy: The sisters brought their triple wedding forward after their mother's condition worsened
Surrounded by friends and family, and with their mother Becky and father Otis in the front row, the sisters took turns to marry their fiances as the others watched.
'It's kind of bittersweet,' Jodie Swales told FOX5 before the ceremony. 'We are happy that she's here, but this will probably be the last big thing that we do with her.
Sarah added: 'It's not like losing a mom, it's like losing a mom and a best friend and anyone would want their best friend at their wedding.
'Our wedding wouldn't be the same if she wasn't there to experience it with us.'
Together: They said their wedding just wouldn't be the same without their mother Becky, seated
Last wish: Becky, who had wanted to see her girls marry, passed away on Monday - hours after the wedding
Excitement: The women said they were overjoyed that their mother could experience their big days
Otis Swales, who walked all of his daughters down the aisle, said he was hoping his faith would get him through.
'My wife is the love of my life so it's hard,' said Otis, who has been married to Becky for 25 years. 'But I'm proud of my daughters. I just pray God gives me strength to get through every day.'
Just 12 hours after her daughters walked down the aisle, Becky Swales succumbed to the disease.
She had been diagnosed with breast cancer on February 15, 2010 and although chemotherapy proved effective at first, doctors recently discovered that the disease had spread to other organs.
Despite her bleak prognosis, Mrs Swales' daughters say she had continued to maintain a positive attitude until her death.
Best friends: Becky, who was diagnosed with breast cancer 4 years ago, is pictured with her daughters
Battle: Chemotherapy was successful at first but doctors later learned the cancer had spread to other organs
Sadness: Her husband of 25 years, Otis, said Becky was the love of his life and life without her would be hard
'She does always have a smile on her face and she's pushing so hard,' Kaylee said.
Before her death, Becky, 43, wrote on Facenook: 'I thank God for waking me up every day. I have such a great support system.
'My loving husband, my three beautiful daughters and my Mom have stood by me every step of the way. I can't say enough about what a blessing that has been.'
Throughout the wedding planning, support and donations had poured in for the family and a company even donated a venue for a reception on October 26, which they said will still go ahead.
Thursday, October 17, 2013
Saturday, October 12, 2013
Pray For The Children Of The World
A 2-year-old boy who was reportedly the son of Minnesota Vikings star Adrian Peterson died Friday of injuries he suffered after allegedly being abused, police said.
Sioux Falls, South Dakota, police said Joseph Robert Patterson, 27, has been charged with aggravated battery of an infant and aggravated assault. If convicted on the charges, both felonies, Patterson could face up to 40 years in prison and an $80,000 fine.
Prosecutors are considering filing additional charges against Patterson in light of the boy's death, according to police.
Soon after the news came out of the boy's death, Adrian Peterson took to Twitter to express his gratitude to his family, fans and the "fraternity of brothers" in the NFL for their support.
"God Bless everyone and thank u so much," he wrote.
My prayers are for the little children around the world that are victims of this worst kind of evil. As a father my heart is broken for little AP and the thousands of other innocent children that are senselessly taken from us. I cannot comprehend such tragedy, abuse must end. Lord please bless the little children and watch over each if them.
Sioux Falls, South Dakota, police said Joseph Robert Patterson, 27, has been charged with aggravated battery of an infant and aggravated assault. If convicted on the charges, both felonies, Patterson could face up to 40 years in prison and an $80,000 fine.
Prosecutors are considering filing additional charges against Patterson in light of the boy's death, according to police.
Soon after the news came out of the boy's death, Adrian Peterson took to Twitter to express his gratitude to his family, fans and the "fraternity of brothers" in the NFL for their support.
"God Bless everyone and thank u so much," he wrote.
My prayers are for the little children around the world that are victims of this worst kind of evil. As a father my heart is broken for little AP and the thousands of other innocent children that are senselessly taken from us. I cannot comprehend such tragedy, abuse must end. Lord please bless the little children and watch over each if them.
Friday, October 11, 2013
Prayers requested: More news from Kat in UK
News from The C Word Blog.
After a fantastic weekend, it was back to reality. I woke up exhausted on Monday morning with sore legs, a nasty cold and a general feeling of malaise. I really didn’t want to get out of bed, least of all to go to my hospital appointment for the check up and nebuliser appointment. My check up went ok today and my consultant wasn’t too worried about my cold. She basically said that half the country seems to have a cold so it was probably inevitable that I’d get it and that it would take an age to shake off. However, she was a bit more concerned with my actual immune system. Since my transplant, I’ve been having twice weekly injections at home.
These injections contain GCSF which helps my bone marrow produce neutrophils which are essential to fighting off nasty bugs and infections, and for some reason my bone marrow is producing it, but they’re not surviving very long which isn’t normal. Two weeks ago, my consultant suggested that I could have Graft versus host disease in my bone marrow where my new donor cells recognise my neutrophils as ‘foreign’ and kills them off. My consultant then decided that they would try another treatment to see if it would help my immune system settle in a bit better and booked me in to have a IV of immunogobulins. Immunogobulins appear naturally in our body but after chemotherapy/transplant, it can take the body some time to recover them, some people don’t and have to have immunogobulin infusions for the rest of their lives (I hope I don’t).
So last week, I had my first infusion. I was quite unhappy about this as it meant having to have a cannula in my arm and fluid pumped into me, I’d really hoped I would never have to have something like this again after my transplant, the only consolation is is that it’s not chemo, just an anti-body being pumped into me. On Monday, I had a blood test to see if the immunogobulins worked and the test showed my neutrophil count was for the first time on a Monday, above 1!
My consultant said that it’s too early to tell if the immunogobulins are responsible. On the basis of this, I have now been given more immunosuppressant tablets to take which will take longer to be weened off. I was really hoping that I’d be off them by now, it feels like progress has been good and now I seem to have taken a little step back. My consultant said not to be disheartened, I’m still doing very well but my new immune system still needs a bit of support to get it up and running.
Read entire article here...
After a fantastic weekend, it was back to reality. I woke up exhausted on Monday morning with sore legs, a nasty cold and a general feeling of malaise. I really didn’t want to get out of bed, least of all to go to my hospital appointment for the check up and nebuliser appointment. My check up went ok today and my consultant wasn’t too worried about my cold. She basically said that half the country seems to have a cold so it was probably inevitable that I’d get it and that it would take an age to shake off. However, she was a bit more concerned with my actual immune system. Since my transplant, I’ve been having twice weekly injections at home.
These injections contain GCSF which helps my bone marrow produce neutrophils which are essential to fighting off nasty bugs and infections, and for some reason my bone marrow is producing it, but they’re not surviving very long which isn’t normal. Two weeks ago, my consultant suggested that I could have Graft versus host disease in my bone marrow where my new donor cells recognise my neutrophils as ‘foreign’ and kills them off. My consultant then decided that they would try another treatment to see if it would help my immune system settle in a bit better and booked me in to have a IV of immunogobulins. Immunogobulins appear naturally in our body but after chemotherapy/transplant, it can take the body some time to recover them, some people don’t and have to have immunogobulin infusions for the rest of their lives (I hope I don’t).
So last week, I had my first infusion. I was quite unhappy about this as it meant having to have a cannula in my arm and fluid pumped into me, I’d really hoped I would never have to have something like this again after my transplant, the only consolation is is that it’s not chemo, just an anti-body being pumped into me. On Monday, I had a blood test to see if the immunogobulins worked and the test showed my neutrophil count was for the first time on a Monday, above 1!
My consultant said that it’s too early to tell if the immunogobulins are responsible. On the basis of this, I have now been given more immunosuppressant tablets to take which will take longer to be weened off. I was really hoping that I’d be off them by now, it feels like progress has been good and now I seem to have taken a little step back. My consultant said not to be disheartened, I’m still doing very well but my new immune system still needs a bit of support to get it up and running.
Read entire article here...
What mantra has helped you on your cancer journey?
From Cancerwise by Kellie Bramlet
Whether you're coping with cancer or another challenge, a mantra can help you get through it.
Many of the cancer patients, caregivers and survivors who have contributed to Cancerwise have shared wonderful words of wisdom that others have looked to for encouragement and inspiration throughout their cancer journeys.
Here some of our most popular quotes from our Cancerwise bloggers.
"In the medical community, this is called remission. To one who's overcome a great deal of obstacles, it's called freedom."
-- Justin Ozuna, chronic myeloid leukemia survivor
"Even if I never hear the word 'remission' or even if cancer takes my life, I will always be a survivor."
-- Cristina Rodriguez, non-Hodgkin lymphoma survivor
"I don't have a choice as to my 'new' normal, so I do what I can to continue to find enjoyment and fulfillment in life."
-- Ed Steger, head and neck cancer survivor
"Cancer may have knocked me down, but I am back on my feet and I am stronger."
-- Linda Ryan, cervical cancer survivor
"Going through cancer gives you an opportunity to see what you're made of. I learned I'm made of more confidence, capability and charisma than I ever knew."
-- Megan Silianoff, ovarian cancer survivor
"I can't protect my wife from something that comes from the inside, but I can be there to hold her hand ready to reassure her that everything will be fine."
-- Gasper Mir, caregiver
"Do what you can. You can do something to impact your outcome. You can live a wonderful life."
-- Tom Barber, lung cancer survivor
"Somehow, some way, you'll get through this. And no matter the outcome, you'll be grateful for the gift of time."
-- Judy Overton, caregiver
"Being a cancer survivor means leveraging the challenges, the misery and fear into energy that allows you to move forward, be there for your loved ones and perhaps make a difference."
-- Oliver Bogler, male breast cancer survivor
"Live life to the fullest and accept the beauty of being given a second chance."
-- Holly Easley, myelodysplastic syndrome survivor
What mantra has helped you on your cancer journey? Tell us on our Facebook page.
Whether you're coping with cancer or another challenge, a mantra can help you get through it.
Many of the cancer patients, caregivers and survivors who have contributed to Cancerwise have shared wonderful words of wisdom that others have looked to for encouragement and inspiration throughout their cancer journeys.
Here some of our most popular quotes from our Cancerwise bloggers.
"In the medical community, this is called remission. To one who's overcome a great deal of obstacles, it's called freedom."
-- Justin Ozuna, chronic myeloid leukemia survivor
"Even if I never hear the word 'remission' or even if cancer takes my life, I will always be a survivor."
-- Cristina Rodriguez, non-Hodgkin lymphoma survivor
"I don't have a choice as to my 'new' normal, so I do what I can to continue to find enjoyment and fulfillment in life."
-- Ed Steger, head and neck cancer survivor
"Cancer may have knocked me down, but I am back on my feet and I am stronger."
-- Linda Ryan, cervical cancer survivor
"Going through cancer gives you an opportunity to see what you're made of. I learned I'm made of more confidence, capability and charisma than I ever knew."
-- Megan Silianoff, ovarian cancer survivor
"I can't protect my wife from something that comes from the inside, but I can be there to hold her hand ready to reassure her that everything will be fine."
-- Gasper Mir, caregiver
"Do what you can. You can do something to impact your outcome. You can live a wonderful life."
-- Tom Barber, lung cancer survivor
"Somehow, some way, you'll get through this. And no matter the outcome, you'll be grateful for the gift of time."
-- Judy Overton, caregiver
"Being a cancer survivor means leveraging the challenges, the misery and fear into energy that allows you to move forward, be there for your loved ones and perhaps make a difference."
-- Oliver Bogler, male breast cancer survivor
"Live life to the fullest and accept the beauty of being given a second chance."
-- Holly Easley, myelodysplastic syndrome survivor
What mantra has helped you on your cancer journey? Tell us on our Facebook page.
Ibrutinib Clinical Trial Study - University of Nebraska
Randy Whisnant from North Carolina comes to the University of Nebraska Medical Center for a clinical trial study of the drug Ibrutinib.
Published on Sep 12, 2013
Thursday, October 10, 2013
We Are The Forgotten Ones
We are the forgotten ones, the overlooked and under-appreciated. Though they try to break us and separate us by class, gender, and cash, we stand strong together. To the voiceless, we gave a voice. We did not wait until they told us it was ok to speak, until we had permission to be unique. Each sign is a direct quote from those who are considered the unpopular and the unwanted. We are not defined by the hate in other's hearts. Immigrants, outcasts, the broken, but not bad, we are Cooper High.
Monday, October 7, 2013
Mary Jo Update #51 - The Great Kidney Stone Mystery Is Solved
Mary Jo went back to the OR again today to get to the bottom of the mysterious images on her xrays that appeared to be kidney stones in her urethra.
Dr. Meiers, her uroligist scoped her urethra and determined that what was showing up on the pictures were two instances of blood vessel calsification near the urethra. He did laser one kidney stone that was in the kidney, but not near the opening to the urethra.
The doctor had to remove the stent that was previously placed in her urethra to perform today's procedure. So, he put another one in afterwards to help her pass any remnants of the lasered kidney stone.
Hopefully, my girl won't have to go back to a doctor's office, except for routine stuff for a long time. Thanks again for all of your thoughts an prayers for us as we near the one year anniversary of when Mary Jo's MCL reared it's ugly head, and she started chemo treatments at Baptist East in Louisville.
So, many things have happened to us since last October. We have been blessed to meet so many wonderful people, patients, caregivers, doctors, nurses and staff at Baptist East Hospital in Louisville, at Vanderbilt University Hospital in Nashville, and at the ACS Hope Lodge in Nashville where we stayed for part of our time there. We were inspired by the courage of the patients and caregivers that we met, and strengthened and reassured by all of the dedicated medical personnel who cared for Mary Jo.
We also have become friends with several people online through this blog, and online NHL support groups walking a journey similar to ours. We have been up lifted by their prayers and support, and hopefully our prayers have helped them, as well.
One of the couples that we have been communicating with for several months are our friends, Steve Dillon and his wife and caregiver, Peggy in North Carolina. Steve and Peggy are currently at Duke University Cancer Center in Durham. Steve has MCL, too. He had an auto SCT on September 25th.
Steve's blood counts have indicated that engraftment has started, but he will be experiencing all of the bad things that happen while transplant patients are neutropenic. Please pray for Steve's complete recovery, and NED (no evidence of disease) on his post-transplant PET probably around his Day+100, Also please pray for everyone that has been adversely affected by the government shutdown.
One more time...
Dr. Meiers, her uroligist scoped her urethra and determined that what was showing up on the pictures were two instances of blood vessel calsification near the urethra. He did laser one kidney stone that was in the kidney, but not near the opening to the urethra.
The doctor had to remove the stent that was previously placed in her urethra to perform today's procedure. So, he put another one in afterwards to help her pass any remnants of the lasered kidney stone.
Hopefully, my girl won't have to go back to a doctor's office, except for routine stuff for a long time. Thanks again for all of your thoughts an prayers for us as we near the one year anniversary of when Mary Jo's MCL reared it's ugly head, and she started chemo treatments at Baptist East in Louisville.
So, many things have happened to us since last October. We have been blessed to meet so many wonderful people, patients, caregivers, doctors, nurses and staff at Baptist East Hospital in Louisville, at Vanderbilt University Hospital in Nashville, and at the ACS Hope Lodge in Nashville where we stayed for part of our time there. We were inspired by the courage of the patients and caregivers that we met, and strengthened and reassured by all of the dedicated medical personnel who cared for Mary Jo.
We also have become friends with several people online through this blog, and online NHL support groups walking a journey similar to ours. We have been up lifted by their prayers and support, and hopefully our prayers have helped them, as well.
One of the couples that we have been communicating with for several months are our friends, Steve Dillon and his wife and caregiver, Peggy in North Carolina. Steve and Peggy are currently at Duke University Cancer Center in Durham. Steve has MCL, too. He had an auto SCT on September 25th.
Steve's blood counts have indicated that engraftment has started, but he will be experiencing all of the bad things that happen while transplant patients are neutropenic. Please pray for Steve's complete recovery, and NED (no evidence of disease) on his post-transplant PET probably around his Day+100, Also please pray for everyone that has been adversely affected by the government shutdown.
One more time...
Monday, September 30, 2013
Mary Jo Update #50 - If they aren't kidney stones...what are they?
Just thought that I would give you an update on Mary Jo's kidney stones. She had a lithotripsy procedure on Tuesday the 24th to fragment the kidney stones. A stent was placed in her urethra to help pass the fragments of the kidney stones. She was supposed to capture the frangments. But, she never really saw any since the procedure. Today, when she went to the urologist we found out why.
The doctor is baffled. The lithotripsy had no effect on the two orbs that the doctor thought were kidney stones in the utethra. They have moved some, but no change in size.
He is thinking that they are not actually in the urethra, but something on a blood vessel next to the urethra. The only way to know for sure is to run a scope up there. We will be going back to the OR to do that on Monday. So, she still has the stent until then.
In hindsight, I thought that it was odd that she would have two kidney stones in the urethra. She had no pain or discomfort before she went to the doctor after whatever or wherever they are became larger when the post-transplant scan was compared to the one done before the transplant by the hematology people here and at Vanderbilt.
Hopefully, they will get to the bottom of it on Monday. Whatever it is, it's not cancerous because the PET scan would have picked that up.
The doctor is baffled. The lithotripsy had no effect on the two orbs that the doctor thought were kidney stones in the utethra. They have moved some, but no change in size.
He is thinking that they are not actually in the urethra, but something on a blood vessel next to the urethra. The only way to know for sure is to run a scope up there. We will be going back to the OR to do that on Monday. So, she still has the stent until then.
In hindsight, I thought that it was odd that she would have two kidney stones in the urethra. She had no pain or discomfort before she went to the doctor after whatever or wherever they are became larger when the post-transplant scan was compared to the one done before the transplant by the hematology people here and at Vanderbilt.
Hopefully, they will get to the bottom of it on Monday. Whatever it is, it's not cancerous because the PET scan would have picked that up.
Sunday, September 29, 2013
Stem Cell Transplants: A Primer
An excellent article from Dr. Sharman's CLL & Lymphoma Blog detailing the basics of stem cell transplants
Very few of the things we do to treat patients with lymphoma or CLL are more foreign than “transplant.” When I bring it up as a treatment option, I often get more of a bland reaction than anything else. When it comes to transplant, I suspect the reason is that most patients don’t even know what they don’t know.
It is easy to be scared of the “boogey man” because we all grow up terrified of the mythical character – but transplant? Few patients have had firsthand experience to understand what it means until they start down that path on their own. Furthermore, there is more misinformation and even fraud out there about “stem cells” than just about any other treatment available. Even the entire medical community was duped by fraudulent science for a number of years. Like many aspects of cancer care, an informed patient with good judgment will always be better off.
There are two main types of transplant – autologous (aka. auto – from yourself) and allogeneic (aka. allo – from someone else).
Auto transplant is really the easiest to understand. The best way to conceptualize an auto transplant is just “high dose chemotherapy.” In an auto transplant, the patient donates his own stem cells (normally by a process called apheresis which is a lot like dialysis). The cells get stored in the freezer for later use. The patient then goes into the hospital for a very high dose of chemotherapy that is enough to wipe out the bone marrow completely. The doc thaws out the stem cells from the freezer, and infuses them into the patient (via the arm) a day or two later.
The stem cells magically find their way back to the bone marrow where they set up shop and begin producing new cells. About three weeks later those stem cells “engraft” and the blood counts start coming back. It has the effect of exposing the cancer to a very high dose of chemotherapy while protecting the bone marrow by keeping it out of the fight.
During the period of time following the chemotherapy and before engraftment, the patient is pretty fragile medically. Red blood cell and platelet transfusions are almost always necessary. Since transfusing white blood cells doesn’t work that well and could even be dangerous the patient is at risk for infections.
Fevers are the norm as gut bacteria take advantage of the absence of an immune system. Infections that would often be quite unusual including fungal infections of the sinuses and lungs can become very dangerous. Just about every patient will be on some powerful antibiotics to get them through those several weeks whether they are treating an infection or trying to prevent one. The patient is often in the hospital for a considerable part of the time while their immune system is compromised. A number of transplant centers are able to get the patient out of the hospital for some of the time but getting readmitted is quite common.
Much of the acute risk abates after the first 30 days, but for a nearly a year, there may be some dysfunction of the immune system. Shingles infections and a weird pneumonia known as PCP (or whatever they have changed its name to this year) can happen during this longer period so preventative antibiotics are fairly common and work pretty well. Overall, I would say that patients feel like a survivor who has regained their footing somewhere between 30-60 days but the lingering, vague, sense of wellbeing takes quite a bit longer. I’ve heard patients say they didn’t feel back to “normal” for anywhere between 6-12 months.
Age makes a huge difference for patients going through this. We always make a point of saying, “chronology does not equal physiology” but as individuals get older the process becomes much harder. The balance between risk and benefits shifts for the worse somewhere between ages 65-75. Many 65 year olds could get through this though they will definitely feel quite a bit older when they are done with it. Other 65 year olds who have acquired lung, heart, or kidney disease along the way may not be eligible. At the other end, few 75 year olds would be able to get through this. Many transplant centers will have an age cutoff of around 70 years and may make exceptions for the 72 year old who still does recreational distance running. Europe tends to be more conservative and age restrictions are more firmly set and may be as young as 60-65 in some cases.
Auto transplant is often employed for patients with Diffuse Large B Cell Lymphoma whose disease has reoccurred after initial therapy. It is also commonly used in T cell NHL (sometimes in first remission, sometimes after relapse depending on the type and other variables). It is less frequently used in Follicular Lymphoma (or other indolent NHL’s) for a variety of reasons and rarely (if ever) used in CLL. Multiple Myeloma is one other blood cancer where it is quite common but I have not written extensively on this blog about that disease.
Allo transplants are an entirely different animal and need considerably more explanation. The fundamental difference in an allo transplant is that the bulk of the anti-cancer activity comes from the transplanted immune system identifying the cancer and eliminating it. The hope is that the immune system doesn’t also eliminate the patient at the same time. Unfortunately it can be hard to control the outcome once the wheels are set in motion.
In allo transplant, there are two main questions. The first is whether the process will be myeloablative (ie. use powerful chemotherapy to wipe out the bone marrow first) or non-myeloablative (just weaken the immune system enough to slip somebody else’s immune system in). The second question is how well matched the donor is. A donor can be a “matched related donor” (MRD), a “matched unrelated donor” (MUD), or a “mismatched unrelated donor.” There are other significant questions (ie. tumor purging, T-cell depletion, half-match donors (ie. haplo) but I want to finish this post before my plane lands in three hours.
In a myeloablative transplant you pretty much start out with an auto transplant in terms of chemotherapy. The most obvious difference though is that the stem cells don’t come from the patient – instead they come from somebody else. In a non-myeloablative transplant you utilize drugs that profoundly weaken the immune system (without getting rid of it completely) enough so that it doesn’t quickly “reject” a bunch of new stem cells as though they were an invading hoard of bacteria. Interestingly, the drugs utilized may include campath and fludarabine (two drugs often used to treat CLL in the first place).
The type of donor also makes an enormous difference. I need to go into a little depth about how the immune system works. HLA genes are central to how an individual’s immune system interacts with the body and any infections. When an infection gets into the body, the virus or bacteria gets swallowed by certain cells and chopped up into lots of tiny bits. These bits then get loaded onto proteins on the surface of the cell encoded by HLA genes sort of like an ice cube in a cup. This is a process known as “antigen presentation.” How the little pieces of chopped up virus or bacteria (the ice) sit inthe HLA proteins (the cup) plays an enormous role in whether the immune system decides there is a problem or not. The better your cup matches somebody else’s cup, the more likely the ice is going to fit the same way (this analogy would work a lot better if it was a really small cup or a really big ice cube so that it was a pretty snug fit)
The major HLA genes are on chromosome 6 and you have two different sets (one from mom and one from dad). On each chromosome, there are three main sites (HLA-A, HLA-B, and HLA-DR) and each site could have quite a few possible variations (59, 118, 124 respectively). So there are six different sites that need to match up perfectly and each site could have a multitude of different variations. Therefore there is a very small chance that two genetically unrelated individuals would be a perfect match. Since half of your HLA genes come from mom and half from dad and in each case they are inherited in unison (ie you get one chromosome with three automatic matches), you have a one in four chance of matching a biologic sibling.
By definition, you could NOT be a match with either a parent or a child (half match at best unless they were cloned). I did have a memorable patient from an area where individuals were occasionally known to get married to a relative. He told me, “Son, my family tree don’t branch.” You should know that donor searches sometimes turn up family surprises (albeit rarely).
Beyond the “major” HLA genes, there are a bunch of “minor” genes that are so numerous and so variable, that it is simply best if you have a sibling donor that is a match. That will almost always be the best fit. If you didn’t win the sibling lottery with the 1/4 chance of a match, then they look through the donor registries. I’ve never understood why this can take so long – but it does. North American Caucasians have a pretty darn good chance of finding several matches. Once you start throwing in ethnic minorities into the gene pool though, the chance of finding a match gets lower (not impossible). Often they may find multiple donors that match and then they can utilize additional techniques to figure out who is a “better match.” Sometimes banked umbilical cord blood can serve as the donor tissue in certain centers.
Once a match is found, and the “conditioning regimen” is given to the patient (whether that is myeloablative chemotherapy, or non-myeloablative therapy), the new stem cells are injected. These can take a while to engraft just like in auto transplants above.
Once the cells are engrafted, a new challenge arises. Since these immune system is from another person, it will start to attack the body it was put into in a process called “graft versus host disease” (aka. GVHD). The physician therefore needs to “lower” the new immune system by giving drugs like methotrexate and cyclosporine. These are not necessarily easy drugs to manage.
You might therefore ask, “if I am getting a new immune system to attack my cancer, why are you choosing to handicap it?” GVHD can be a lot worse than the cancer at times. GVHD is divided into early versus late depending on which side of 100 days it falls. Acute GVHD can manifest with dangerous rash, diarrhea, and liver dysfunction. Chronic GVHD can have just about any sort of problem you can imagine, but often includes skin and gastrointestinal side effects. Acute GVHD can be life threatening if not managed correctly. Simultaneously with a lowered immune system, infections can be an enormous problem.
The danger often subsides with time and the immune suppression can be lowered. This enables the transplanted immune system to go after the cancer. Since that can take a while though, it makes most sense for patients to have their disease under optimal control before going into transplant. If you have a lot of CLL running around, chances are it will progress before the immune system can go after it. Furthermore, the immune system may think the cancer is supposed to be there, then you are stuck with both the cancer and the GVHD…..aargh.
If everything goes well, the transplant center may let you return to your home community after about 100 days. Yes – you may need to temporarily live near the hospital for several months. Transplant programs often have arrangements to make this possible.
If all goes well, you may indeed be cured of your disease. For something like relapsed DLBCL or CLL, that can be a life you would not possible have any other way. It makes it quite a high stakes gamble. There is both high risk and potentially high reward.
Many have heard about the new “engineered T-cells.” I am on my way back from the IWCLL meeting (international workshop on CLL) where we heard an update on this technology. Looks like 1 out of four patients may be genuinely cured by this. Another 1 out of 4 get a partial response. For half of those it is brief and the other half it continues to improve over time. 2 out of 4 patients may not benefit from the procedure.
These are impressive statistics for a procedure that functions like an “allo transplant” but by definition does not have the risk of GVHD. Numbers are still VERY small. Something like 30 patients have been treated at Penn TOTAL. I think in the long run, this will be done before allo transplants – but it is still early enough that it remains difficult to predict.
Hopefully that is a good orientation. It is by no means complete but I think I’ve officially got a writers cramp.
Very few of the things we do to treat patients with lymphoma or CLL are more foreign than “transplant.” When I bring it up as a treatment option, I often get more of a bland reaction than anything else. When it comes to transplant, I suspect the reason is that most patients don’t even know what they don’t know.
It is easy to be scared of the “boogey man” because we all grow up terrified of the mythical character – but transplant? Few patients have had firsthand experience to understand what it means until they start down that path on their own. Furthermore, there is more misinformation and even fraud out there about “stem cells” than just about any other treatment available. Even the entire medical community was duped by fraudulent science for a number of years. Like many aspects of cancer care, an informed patient with good judgment will always be better off.
There are two main types of transplant – autologous (aka. auto – from yourself) and allogeneic (aka. allo – from someone else).
Auto transplant is really the easiest to understand. The best way to conceptualize an auto transplant is just “high dose chemotherapy.” In an auto transplant, the patient donates his own stem cells (normally by a process called apheresis which is a lot like dialysis). The cells get stored in the freezer for later use. The patient then goes into the hospital for a very high dose of chemotherapy that is enough to wipe out the bone marrow completely. The doc thaws out the stem cells from the freezer, and infuses them into the patient (via the arm) a day or two later.
The stem cells magically find their way back to the bone marrow where they set up shop and begin producing new cells. About three weeks later those stem cells “engraft” and the blood counts start coming back. It has the effect of exposing the cancer to a very high dose of chemotherapy while protecting the bone marrow by keeping it out of the fight.
During the period of time following the chemotherapy and before engraftment, the patient is pretty fragile medically. Red blood cell and platelet transfusions are almost always necessary. Since transfusing white blood cells doesn’t work that well and could even be dangerous the patient is at risk for infections.
Fevers are the norm as gut bacteria take advantage of the absence of an immune system. Infections that would often be quite unusual including fungal infections of the sinuses and lungs can become very dangerous. Just about every patient will be on some powerful antibiotics to get them through those several weeks whether they are treating an infection or trying to prevent one. The patient is often in the hospital for a considerable part of the time while their immune system is compromised. A number of transplant centers are able to get the patient out of the hospital for some of the time but getting readmitted is quite common.
Much of the acute risk abates after the first 30 days, but for a nearly a year, there may be some dysfunction of the immune system. Shingles infections and a weird pneumonia known as PCP (or whatever they have changed its name to this year) can happen during this longer period so preventative antibiotics are fairly common and work pretty well. Overall, I would say that patients feel like a survivor who has regained their footing somewhere between 30-60 days but the lingering, vague, sense of wellbeing takes quite a bit longer. I’ve heard patients say they didn’t feel back to “normal” for anywhere between 6-12 months.
Age makes a huge difference for patients going through this. We always make a point of saying, “chronology does not equal physiology” but as individuals get older the process becomes much harder. The balance between risk and benefits shifts for the worse somewhere between ages 65-75. Many 65 year olds could get through this though they will definitely feel quite a bit older when they are done with it. Other 65 year olds who have acquired lung, heart, or kidney disease along the way may not be eligible. At the other end, few 75 year olds would be able to get through this. Many transplant centers will have an age cutoff of around 70 years and may make exceptions for the 72 year old who still does recreational distance running. Europe tends to be more conservative and age restrictions are more firmly set and may be as young as 60-65 in some cases.
Auto transplant is often employed for patients with Diffuse Large B Cell Lymphoma whose disease has reoccurred after initial therapy. It is also commonly used in T cell NHL (sometimes in first remission, sometimes after relapse depending on the type and other variables). It is less frequently used in Follicular Lymphoma (or other indolent NHL’s) for a variety of reasons and rarely (if ever) used in CLL. Multiple Myeloma is one other blood cancer where it is quite common but I have not written extensively on this blog about that disease.
Allo transplants are an entirely different animal and need considerably more explanation. The fundamental difference in an allo transplant is that the bulk of the anti-cancer activity comes from the transplanted immune system identifying the cancer and eliminating it. The hope is that the immune system doesn’t also eliminate the patient at the same time. Unfortunately it can be hard to control the outcome once the wheels are set in motion.
In allo transplant, there are two main questions. The first is whether the process will be myeloablative (ie. use powerful chemotherapy to wipe out the bone marrow first) or non-myeloablative (just weaken the immune system enough to slip somebody else’s immune system in). The second question is how well matched the donor is. A donor can be a “matched related donor” (MRD), a “matched unrelated donor” (MUD), or a “mismatched unrelated donor.” There are other significant questions (ie. tumor purging, T-cell depletion, half-match donors (ie. haplo) but I want to finish this post before my plane lands in three hours.
In a myeloablative transplant you pretty much start out with an auto transplant in terms of chemotherapy. The most obvious difference though is that the stem cells don’t come from the patient – instead they come from somebody else. In a non-myeloablative transplant you utilize drugs that profoundly weaken the immune system (without getting rid of it completely) enough so that it doesn’t quickly “reject” a bunch of new stem cells as though they were an invading hoard of bacteria. Interestingly, the drugs utilized may include campath and fludarabine (two drugs often used to treat CLL in the first place).
The type of donor also makes an enormous difference. I need to go into a little depth about how the immune system works. HLA genes are central to how an individual’s immune system interacts with the body and any infections. When an infection gets into the body, the virus or bacteria gets swallowed by certain cells and chopped up into lots of tiny bits. These bits then get loaded onto proteins on the surface of the cell encoded by HLA genes sort of like an ice cube in a cup. This is a process known as “antigen presentation.” How the little pieces of chopped up virus or bacteria (the ice) sit inthe HLA proteins (the cup) plays an enormous role in whether the immune system decides there is a problem or not. The better your cup matches somebody else’s cup, the more likely the ice is going to fit the same way (this analogy would work a lot better if it was a really small cup or a really big ice cube so that it was a pretty snug fit)
The major HLA genes are on chromosome 6 and you have two different sets (one from mom and one from dad). On each chromosome, there are three main sites (HLA-A, HLA-B, and HLA-DR) and each site could have quite a few possible variations (59, 118, 124 respectively). So there are six different sites that need to match up perfectly and each site could have a multitude of different variations. Therefore there is a very small chance that two genetically unrelated individuals would be a perfect match. Since half of your HLA genes come from mom and half from dad and in each case they are inherited in unison (ie you get one chromosome with three automatic matches), you have a one in four chance of matching a biologic sibling.
By definition, you could NOT be a match with either a parent or a child (half match at best unless they were cloned). I did have a memorable patient from an area where individuals were occasionally known to get married to a relative. He told me, “Son, my family tree don’t branch.” You should know that donor searches sometimes turn up family surprises (albeit rarely).
Beyond the “major” HLA genes, there are a bunch of “minor” genes that are so numerous and so variable, that it is simply best if you have a sibling donor that is a match. That will almost always be the best fit. If you didn’t win the sibling lottery with the 1/4 chance of a match, then they look through the donor registries. I’ve never understood why this can take so long – but it does. North American Caucasians have a pretty darn good chance of finding several matches. Once you start throwing in ethnic minorities into the gene pool though, the chance of finding a match gets lower (not impossible). Often they may find multiple donors that match and then they can utilize additional techniques to figure out who is a “better match.” Sometimes banked umbilical cord blood can serve as the donor tissue in certain centers.
Once a match is found, and the “conditioning regimen” is given to the patient (whether that is myeloablative chemotherapy, or non-myeloablative therapy), the new stem cells are injected. These can take a while to engraft just like in auto transplants above.
Once the cells are engrafted, a new challenge arises. Since these immune system is from another person, it will start to attack the body it was put into in a process called “graft versus host disease” (aka. GVHD). The physician therefore needs to “lower” the new immune system by giving drugs like methotrexate and cyclosporine. These are not necessarily easy drugs to manage.
You might therefore ask, “if I am getting a new immune system to attack my cancer, why are you choosing to handicap it?” GVHD can be a lot worse than the cancer at times. GVHD is divided into early versus late depending on which side of 100 days it falls. Acute GVHD can manifest with dangerous rash, diarrhea, and liver dysfunction. Chronic GVHD can have just about any sort of problem you can imagine, but often includes skin and gastrointestinal side effects. Acute GVHD can be life threatening if not managed correctly. Simultaneously with a lowered immune system, infections can be an enormous problem.
The danger often subsides with time and the immune suppression can be lowered. This enables the transplanted immune system to go after the cancer. Since that can take a while though, it makes most sense for patients to have their disease under optimal control before going into transplant. If you have a lot of CLL running around, chances are it will progress before the immune system can go after it. Furthermore, the immune system may think the cancer is supposed to be there, then you are stuck with both the cancer and the GVHD…..aargh.
If everything goes well, the transplant center may let you return to your home community after about 100 days. Yes – you may need to temporarily live near the hospital for several months. Transplant programs often have arrangements to make this possible.
If all goes well, you may indeed be cured of your disease. For something like relapsed DLBCL or CLL, that can be a life you would not possible have any other way. It makes it quite a high stakes gamble. There is both high risk and potentially high reward.
Many have heard about the new “engineered T-cells.” I am on my way back from the IWCLL meeting (international workshop on CLL) where we heard an update on this technology. Looks like 1 out of four patients may be genuinely cured by this. Another 1 out of 4 get a partial response. For half of those it is brief and the other half it continues to improve over time. 2 out of 4 patients may not benefit from the procedure.
These are impressive statistics for a procedure that functions like an “allo transplant” but by definition does not have the risk of GVHD. Numbers are still VERY small. Something like 30 patients have been treated at Penn TOTAL. I think in the long run, this will be done before allo transplants – but it is still early enough that it remains difficult to predict.
Hopefully that is a good orientation. It is by no means complete but I think I’ve officially got a writers cramp.
Subscribe to:
Posts (Atom)