I have posted a few articles about Billy, Mary Jo's nephew, and his battle with Chronic Lymphcytic Leukemia and now Richter's Syndrome. We found out today that Billy's mom, Linda, has been diagnosed with Peritoneal cancer. This is a rare cancer that develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum. The peritoneum is made of epithelial cells. By producing a lubricating fluid, the peritoneum helps the organs to move smoothly inside the abdomen. Linda will have surgery next week at the University of Kentucky Medical Center in Lexington to determine the extent of the cancer, and a treatment plan.
Billy will be going back to Vanderbilt next week for his second round of R-EPOCH chemo to put the Richter's Transformation in remission in preparation for an allo stem cell transplant. Since his first treatment Billy's blood levels and energy level has been low. Mary Jo is still doing well. Please pray for Billy, his mom, Linda, and that Mary Jo's mantle cell lymphoma stays away forever. Also, please pray for our friend, Steve, in North Carolina., and his wife and caregiver, Peggy. Steve will be having an auto stem cell transplant at Duke University Hospital in Durham. Steve is currently in the mobilization phase of the process. He will going to Duke for the epheresis collection soon.
When It Rains It Pours
When it rains it pours, That`s an old saying
I keep telling myself I have to keep praying
They say God won`t give us to much to bear
I feel weighed down, But I know I`m in Gods care
Jesus has been there for me many times, He`s made me strong
It rained and it poured, But Jesus was there with me all along
I`ve learned each trail made me stronger, I believe even more
I know in my heart, He is with us,When the rain begins to pour
I now know when it rains it pours at times, It does for sure
The problems keep coming, You think you can`t take anymore
Dear friends hold on to your faith, Jesus will make you strong
I`ll never again lose faith, With Jesus I know I can`t go wrong
Friday, September 6, 2013
Tim McGraw and Vanderbilt UMC present "Highway Don't Care"
Vanderbilt University Medical Center is raising awareness of the dangers associated with distracted driving through its participation in the newly released video for the song “Highway Don’t Care,” performed by Tim McGraw and featuring Taylor Swift and Keith Urban. Vanderbilt LifeFlight, Vanderbilt University Hospital and the Adult Emergency Department were featured in the video, which depicts a young woman injured in a car accident as the result of texting while driving.
“We at LifeFlight unfortunately transport and treat many young patients in the prime of their lives with serious, if not life-threatening or fatal injuries that are a direct result of not focusing on the road,” said Jeremy Brywczynski, M.D., Medical Director for Vanderbilt LifeFlight and assistant professor of Emergency Medicine. “When we were approached to participate in a music video that will reach millions of youth around the country about these dangers, it was an opportunity that we could not refuse.”
Brywczynski was one of more than 20 Vanderbilt faculty and staff who participated in the video shoot, along with Jared McKinney, M.D., assistant professor of Emergency Medicine and medical director for the Event Medicine division of LifeFlight, Sean Collins, M.D., associate professor of Emergency Medicine, flight nurse Rachel Jones, R.N., B.S.N., and Bo Phillips, NREMT-P, FP-C, chief flight paramedic, with Tom Adams as pilot.
Each day in the United States, more than nine people are killed and more than 1,060 are injured in crashes that involve a distracted driver, according to the Centers for Disease Control and Prevention.
“Distracted driving, especially driving while texting, has been shown to cause a level of impairment similar to that of alcohol intoxication,” Brywczynski said.
The Vanderbilt Trauma team is raising awareness of the dangers associated with distracted driving by signing and circulating pledge cards that promise to avoid all behind-the-wheel activities that take attention away from the road. (photo by Sondra Blount)
Nurses at Vanderbilt University Medical Center’s Level-1 Trauma Center want to see an end to behind-the-wheel activities that take attention away from the road. These caregivers, who treat hundreds of seriously injured patients each year due to distracted driving, are taking a pledge to raise awareness of the dangers associated with it.
As part of National Trauma Awareness Month, recognized each May, Vanderbilt Trauma nurses are leading a campaign titled “If You’re Distracted, We’re Impacted,” an initiative of theSociety of Trauma Nurses. Pledge cards are being circulated throughout the hospital, encouraging people to avoid all distractions while driving a vehicle and spread the message to family and friends.
“As a driver, you not only assume responsibility for your own safety but the safety of your passengers, bystanders and those in other vehicles,” said Trauma Outreach and Injury Prevention Coordinator Cathy Wilson, R.N., M.S.N. “Vanderbilt’s Trauma staff have taken the pledge to refrain from distracted driving and extend this challenge to all drivers.”
Distracted driving is defined as driving while doing another activity that takes your attention away from the road, such as text messaging, talking on the phone, eating or putting on makeup. While any of these distractions can endanger the driver and others, texting while driving is especially dangerous because it combines three types of distraction: visual – taking your eyes off the road; manual – taking your hands off the wheel; and cognitive – taking your mind off what you are doing.
*Distracted driving statistics:
- Text messaging creates a crash risk 23 times worse than driving while not distracted.
- 16 percent of fatal crashes involve reports of distracted driving.
- 20 percent of injury crashes involve reports of distracted driving.
- Drivers who use hand-held devices are four times more likely to get into crashes serious enough to injure themselves.
- Sending or receiving a text takes a driver’s eyes off the road for an average of 4.6 seconds. At 55 mph, this is the equivalent of driving the length of a football field blindfolded.
- Using a cell phone while driving, whether hand-held or hands-free, delays a driver’s reaction as much as having a blood alcohol concentration at the legal limit of .08.
Saturday, August 31, 2013
Going Viral: Heartwarming Photo of Wife Carrying Double-Amputee Marine Husband
ABC News' Robyn Weil reports:
At first glance, Jesse and Kelly Cottle, of San Diego, Calif., look like any cute couple in love.
But take a closer look at this photo of Kelly giving husband Jesse, a marine and double-amputee, a piggyback ride, and it's clear to see why the picture has gone wildly viral.
Jesse, 28, lost both of his legs in Afghanistan in 2009 after stepping on an IED, which was all caught on video by a fellow marine wearing a helmet camera.
The footage was even used in a documentary about Jesse called "Coming Home."
"If I hadn't stepped on that IED I wouldn't have met her," Jesse told ABC News. "I wouldn't take it back ever."
After spending months recovering in the hospital, Jesse met his future wife Kelly, 24, in San Diego at a swim meet during one of his first outings with his new prosthetic legs. "His personality and who he is just outweighs his injuries by so much that you forget about it after a while," Kelly explained.
Recently, the couple took a trip to visit Kelly's family in Boise, Idaho, where they decided to have a family portrait taken. "Someone had suggested taking photos in the water," said Kelly. "I was carrying Jesse back to his legs, and the photographer was like, 'Oh we'll get a couple of shots of you together.' It wasn't planned or anything."
The photographer, Sarah Ledford, posted the picture to her Facebook page, where it immediately started gaining attention, racking up more than 7,000 likes, more than 500 shares and getting countless comments, all in awe of the couple's strengths and resilience in the face of adversity.
"It's an amazingly inspiring story that has touched the lives of many Americans," Ledford said. "Jesse is not a hero for stepping on an IED, he's a hero because of the way he has handled what was handed to him and how he chooses to continue to conduct his life with his positive attitude."
"The photo really says it all," Jesse added. "I actually look at it very much as a symbol for our whole relationship in general. She's physically carrying me, but there's times where she's carrying me emotionally. It's a perfect representation of who Kelly is."
The happy couple just celebrated their first wedding anniversary on Aug. 18 by eating the top layer of their red velvet wedding cake.
Friday, August 30, 2013
Have hope...the statistics do not tell the whole story
Jesus said to him, “If you are able to believe, everything is possible to the one who believes.”
Searching the internet for some glimmer of hope as Mary Jo's nephew, Billy, begins his battle with Richter's Transformation. I found a message on a CLL support group website and an article from New York that give me hope that Billy can beat this nasty turn that his cancer has taken:
And then I found this story from WABC in New York about a chef in New Jersey who has had five cancers, including Richter's Syndrome.
Searching the internet for some glimmer of hope as Mary Jo's nephew, Billy, begins his battle with Richter's Transformation. I found a message on a CLL support group website and an article from New York that give me hope that Billy can beat this nasty turn that his cancer has taken:
Hello. I am new to this group. My dad just finished his first round of R-CHOP chemo for Richter's Transformation. His CLL transformed to an aggressive high grade large B-cell lymphoma. I am looking for others that have gone through or are going through this treatment. He had 4 rounds of chemo 3 years ago to treat his CLL. The CLL is now completely gone - but has transformed into this rare but horrible cancer. Any information positive or negative is welcome. Thank you. HS
Hello Heather, Sorry to hear about your Dad, but as others have already stated, a Richter's Transformation is not necessarily as grim as the internet statistics would lead you to believe. My husband was diagnosed in 2003 at age 49 with atypical CLL. His wbc was steadily rising, although he was completely asymptomatic, and therefore did not require treatment. All that changed in May of 2009 when he became abruptly and acutely ill with a Richter's Transformation that manifested in his now incredibly enlarged spleen. He was at the local ER on a Sunday for a CT scan and blood work that revealed very elevated LDH levels as well as multiple suspicious lesions on his spleen. His wbc actually dropped from 85,000 to 60,000. Monday his oncologist ordered a PET scan that "lit up" and by Wednesday he started R-CHOP. Improvement was observed by his second treatment which was given every two weeks for six cycles. He handled it better than we expected with constipation and hiccups being his major complaint. His doctor ordered a variety of prophylactic medications which did their job to keep him comfortable and able to work initially full time, and then part-time. He continued to take an antiviral and an antibiotic prophylactically for 6 months post treatment. Two weeks post treatment, with the oncologist's permission, we were able to vacation in Nova Scotia. As his doctor likes to say, " Richter's Transformations are not all created equally." R-CHOP is very effective at potentially curing DLBCL (RT) My husband continues to enjoy remission for both the RT, as well as his CLL. All his blood counts are completely within the normal range and he enjoys a very good quality of life. At almost four years, we are hopeful that the RT will not return. However, we also know that the CLL is lurking and will eventually resurface. Until then, we enjoy our lives! We have maintained contact with others who have traveled the Richter's Road and continue to do well. Please feel free to contact us if you have any questions. Have hope...the statistics do not tell the whole story. Stella & Peter
And then I found this story from WABC in New York about a chef in New Jersey who has had five cancers, including Richter's Syndrome.
NEW YORK (WABC) -- To hear a diagnosis of cancer is usually an extremely difficult undertaking, but hearing it five different times is unimaginable to most of us.
Eric Levine, 41, says the fifth time changed his life dramatically.
For seven years, he was free from cancer until this year.
"I've had cancer five times. I've had chondrosarcoma, Hodgkins AML, leukemia twice, and then Richter's Syndrome, which is an advanced form of chronic lymphocytic leukemia," Levine said.
But instead of stopping the professional chef, the diagnosis has made him go for life at a faster pace and in a different way.
He took a new job as the chef at the Montammy Golf Club in Alpine, New Jersey. And he brought out a new cookbook.
He competed in a nationwide Food Network cooking series called Chopped, sometimes taping shows right after his chemotherapy treatment.
"I'm in remission. We're in the fourth week right now of remission, so it's a great thing and I couldn't be happier place in life as far as work," he said.
It's work where he pours out his passion for food and now also for good health.
Vegetable drinks, not normally a golf club staple, are now included in Montammy's menu.
But more has changed for chef Eric - his attitude about life. He's says he's now learned what really matters.
"I learned that I could do so much better, and so much more for people than I have been. And that does a lot for me," he said.
Already he's begun doing for others. This year he was honored in the American Cancer Society's Taste of Hope event.
"It used to be all about me, but now it's, you know - it's about others. It's an interesting life, an interesting life. If I can do great things, to inspire others, that's what I want to do," Levine said.
Prayers requested: Richter's Transformation
Mary Jo's nephew Billy's Chronic Lymphocytic Leukemia(CLL)has transformed into Richter Transformation, aka Richter's Syndrome. Billy has just finished the first of three cycles of R-EPOCH chemo at Vanderbilt University Hospital. Please keep Billy and all those who suffer with CLL and Richter's Transformation in your prayers.
Monday, August 19, 2013
UPDATED: Mary Jo Update #48: NED, RS/RT: The Good, The Bad and The Ugly
I have not been posting lately. Mainly, because nearly all of the news since we arrived home since Mary Jo's transplant has been good news. I figured that most people would think that "no news is good news."
Mary Jo celebrated her Day+100 last Wednesdy, August 14th. We are at Vanderbilt today for a PET scan, bone marrow biopsy, pulmonary function test, and meeting with the transplant coordinator, Dr. Nashitha Reddy, to evaluate the success of her transplant.
The results are in for everything, except for the bone marrow biopsy, and the report is fantastic - NED - No Evidence of Disease. The initials and words that every cancer patient want to hear. It will take a couple of days for bone marrow results, but there is no reason to expect the result will be any different from the others. Dr. Reddy has released Mary Jo back to the care of her oncologists in Louisville.
We owe a debt of gratitude to all of the doctors, nurses, nurse practitioners, aides, and social workers here at Vanderbilt. Needless to say Vanderbilt and the dedicated people who are performing miracles everyday here will always hold a special place in our hearts. Go Vandy!
Mary Jo has had a couple of mornings where she has had some unexplained dizziness, and it appears that the BCNU (carmustine) chemotherapy that she received just prior to her stem cell transplant on May 6th has caused some diastolic dysfunction with her heart.
Her blood labs since we returned home, all indicated that Mary Jo's MCL was in remission and the transplant was successful. Other than having some periods of fatigue, and the things that I mentiones, things have been pretty much back to normal with us.
Unfortunately, all the news that I have for you is not good. We received some disturbing news about Mary Jo's nephew, Billy, at the end of last week. Billy was diagnosed with Chronic Lymphocytic Leukemia (CLL) about the time that Mary Jo was diagnosed with MCL in October, 2009. Billy had completed a clinical trial here at Vanderbilt for refractory CLL patients using the BK inhibiting drug Ibrutinib.
Billy had been taking Ibrutinib for several weeks after the clinical trial ended back in June. His lymph nodes had shrunk. Everything was looking great. there was the possibility of an allo stem cell transplant somewhere far out in the future. Billy was feeling great both physically and mentally. he was full of hope for the future, and getting his life back to normal.
Billy had a CT scan a few weeks ago to evaluate the great progress that had been made with the Ibrutinib. Without any adverse symptoms, the CT indicated that lymph nodes in his back and in his chest area were enlarged. One near his heart measured 5cm.
When Billy's doctor at Vanderbilt gave Billy the bad news, he scheduled a CT guided biopsy of one of the affected lymph nodes last week. The pathology report indicates that Billy's CLL has transfomed into an aggressive blood cancer called diffuse large cell lymphoma. When this occurs the lymphoma is called Richter Syndrome RS, or Richter Transformation RT. I have included some information about RS/RT below
Last week while Billy was here at Vanderbilt, the lymph nodes in his back had grown to the point that they were causing pressure on his kidneys causing excruciating pain. The pain became so intense Thursday night that he went to Vanderbilt's emergency room. He is now on a pain killer to manage the pain.
We were able to see Billy, and his friend, Rita, yesterday over at Hope Lodge before they went home, and I talked to him again this evening after we got home from Nashville. Billy will be going back to Nashville on Wednesday to begin chemotherapy treatments to reduce the size of his lymph nodes.
Dr. Olalekan O. Oluwole, his doctor at Vanderbilt told Billy that the game plan is for him to have three-five day treatments with the R-EPOCH chemo regimen with 21 days off after each of the three-five day treatments. Then they will begin the allo stem cell transplant process. The R-EPOCH chemo is much stronger than any chemo that Mary Jo has had which says alot for the powerfully, agressive nature of the Richter Syndrome.
Dr. Oluwole told Billy that he is the first CLL patient at Vanderbilt who has had CLL with the P17 deletion that has transformed into Richter Syndrome. It appears that Billy's transplant could happen sometime in November. He will have an allo stem cell transplant, using his sister's stem cells, as soon.
Needless to say, this development has bummed us all out. RS/RT is so aggressive and can cause the patient's health to deteriorate so rapidly and severely that time is of the essence.
Please pray for Billy in the coming weeks and months, and thanks again for all of your wonderful thoughts and prayers for Mary Jo and I over the last several months. I will continue to keep you posted on Billy's journey. Hopefully, Mary Jo's "no news is good news" status will last for a long time. Amen
RICHTER'S SYNDROME
Definition
Richter's syndrome is a rare and aggressive type of acute adult leukemia that results from a transformation of chronic lymphocytic leukemia into diffuse large cell lymphoma.
Description
Leukemia is a group of cancers of the white blood cells. In adults, white blood cells are made in the bone marrow of the flat bones (skull, shoulder blades, ribs, hip bones). There are three main types of white blood cells: granulocytes, monocytes, and lymphocytes. Richter's syndrome concerns only the lymphocytes.
Lymphocytic leukemia develops from lymphocytes in the bone marrow. Unlike many other cancers in which a tumor starts growing in one particular location, lymphocytic leukemia is a disease of blood cells that travel throughout the body. In chronic (long-term) lymphocytic leukemia (CLL), lymphocytes do not follow a normal life cycle, and eventually, too many will exist in the blood. They are abnormal and do not fight infections well.
In a small percentage of people, CLL, even when it is treated, transforms into a new kind of aggressive blood cancer called diffuse large cell lymphoma. When this transformation occurs, it is called Richter's syndrome. The disease is named for the American pathologist Maurice Nathaniel Richter, who practiced medicine early in the twentieth century.
Demographics
Richter's syndrome is a disease of older adults. It is an extremely rare disease. In a recent year, the American Cancer Society estimates that, there were over 8,000 new cases of chronic lymphocytic leukemia, and that 98% of these were in adults. Of these new cases, 5% or less, will develop into Richter's syndrome.
In general, people who are more likely to get CLL are those who smoke, have been exposed to high doses of radiation, or who have had long-term exposure to herbicides, pesticides, or other chemicals. People who have close relatives (parent, siblings or children) with CLL are also more likely to develop the disease. However, none of these risk factors predict whether CLL will develop into Richter's syndrome.
Causes and symptoms
Scientists have yet to understand why some people develop Richter's syndrome and others do not. So far, no firm genetic or environmental links have been found.
When the transformation from CLL to Richter's syndrome occurs, a change occurs in the way the lymphocytes look under the microscope. In addition, lymph nodes swell, tumors grow rapidly in the lymph system, and the patient may experience fever, night sweats, and weight loss. The patient's health deteriorates rapidly and severely.
Mary Jo celebrated her Day+100 last Wednesdy, August 14th. We are at Vanderbilt today for a PET scan, bone marrow biopsy, pulmonary function test, and meeting with the transplant coordinator, Dr. Nashitha Reddy, to evaluate the success of her transplant.
The results are in for everything, except for the bone marrow biopsy, and the report is fantastic - NED - No Evidence of Disease. The initials and words that every cancer patient want to hear. It will take a couple of days for bone marrow results, but there is no reason to expect the result will be any different from the others. Dr. Reddy has released Mary Jo back to the care of her oncologists in Louisville.
We owe a debt of gratitude to all of the doctors, nurses, nurse practitioners, aides, and social workers here at Vanderbilt. Needless to say Vanderbilt and the dedicated people who are performing miracles everyday here will always hold a special place in our hearts. Go Vandy!
Mary Jo has had a couple of mornings where she has had some unexplained dizziness, and it appears that the BCNU (carmustine) chemotherapy that she received just prior to her stem cell transplant on May 6th has caused some diastolic dysfunction with her heart.
Her blood labs since we returned home, all indicated that Mary Jo's MCL was in remission and the transplant was successful. Other than having some periods of fatigue, and the things that I mentiones, things have been pretty much back to normal with us.
Unfortunately, all the news that I have for you is not good. We received some disturbing news about Mary Jo's nephew, Billy, at the end of last week. Billy was diagnosed with Chronic Lymphocytic Leukemia (CLL) about the time that Mary Jo was diagnosed with MCL in October, 2009. Billy had completed a clinical trial here at Vanderbilt for refractory CLL patients using the BK inhibiting drug Ibrutinib.
Billy had been taking Ibrutinib for several weeks after the clinical trial ended back in June. His lymph nodes had shrunk. Everything was looking great. there was the possibility of an allo stem cell transplant somewhere far out in the future. Billy was feeling great both physically and mentally. he was full of hope for the future, and getting his life back to normal.
Billy had a CT scan a few weeks ago to evaluate the great progress that had been made with the Ibrutinib. Without any adverse symptoms, the CT indicated that lymph nodes in his back and in his chest area were enlarged. One near his heart measured 5cm.
When Billy's doctor at Vanderbilt gave Billy the bad news, he scheduled a CT guided biopsy of one of the affected lymph nodes last week. The pathology report indicates that Billy's CLL has transfomed into an aggressive blood cancer called diffuse large cell lymphoma. When this occurs the lymphoma is called Richter Syndrome RS, or Richter Transformation RT. I have included some information about RS/RT below
Last week while Billy was here at Vanderbilt, the lymph nodes in his back had grown to the point that they were causing pressure on his kidneys causing excruciating pain. The pain became so intense Thursday night that he went to Vanderbilt's emergency room. He is now on a pain killer to manage the pain.
We were able to see Billy, and his friend, Rita, yesterday over at Hope Lodge before they went home, and I talked to him again this evening after we got home from Nashville. Billy will be going back to Nashville on Wednesday to begin chemotherapy treatments to reduce the size of his lymph nodes.
Dr. Olalekan O. Oluwole, his doctor at Vanderbilt told Billy that the game plan is for him to have three-five day treatments with the R-EPOCH chemo regimen with 21 days off after each of the three-five day treatments. Then they will begin the allo stem cell transplant process. The R-EPOCH chemo is much stronger than any chemo that Mary Jo has had which says alot for the powerfully, agressive nature of the Richter Syndrome.
Dr. Oluwole told Billy that he is the first CLL patient at Vanderbilt who has had CLL with the P17 deletion that has transformed into Richter Syndrome. It appears that Billy's transplant could happen sometime in November. He will have an allo stem cell transplant, using his sister's stem cells, as soon.
Needless to say, this development has bummed us all out. RS/RT is so aggressive and can cause the patient's health to deteriorate so rapidly and severely that time is of the essence.
Please pray for Billy in the coming weeks and months, and thanks again for all of your wonderful thoughts and prayers for Mary Jo and I over the last several months. I will continue to keep you posted on Billy's journey. Hopefully, Mary Jo's "no news is good news" status will last for a long time. Amen
RICHTER'S SYNDROME
Definition
Richter's syndrome is a rare and aggressive type of acute adult leukemia that results from a transformation of chronic lymphocytic leukemia into diffuse large cell lymphoma.
Description
Leukemia is a group of cancers of the white blood cells. In adults, white blood cells are made in the bone marrow of the flat bones (skull, shoulder blades, ribs, hip bones). There are three main types of white blood cells: granulocytes, monocytes, and lymphocytes. Richter's syndrome concerns only the lymphocytes.
Lymphocytic leukemia develops from lymphocytes in the bone marrow. Unlike many other cancers in which a tumor starts growing in one particular location, lymphocytic leukemia is a disease of blood cells that travel throughout the body. In chronic (long-term) lymphocytic leukemia (CLL), lymphocytes do not follow a normal life cycle, and eventually, too many will exist in the blood. They are abnormal and do not fight infections well.
In a small percentage of people, CLL, even when it is treated, transforms into a new kind of aggressive blood cancer called diffuse large cell lymphoma. When this transformation occurs, it is called Richter's syndrome. The disease is named for the American pathologist Maurice Nathaniel Richter, who practiced medicine early in the twentieth century.
Demographics
Richter's syndrome is a disease of older adults. It is an extremely rare disease. In a recent year, the American Cancer Society estimates that, there were over 8,000 new cases of chronic lymphocytic leukemia, and that 98% of these were in adults. Of these new cases, 5% or less, will develop into Richter's syndrome.
In general, people who are more likely to get CLL are those who smoke, have been exposed to high doses of radiation, or who have had long-term exposure to herbicides, pesticides, or other chemicals. People who have close relatives (parent, siblings or children) with CLL are also more likely to develop the disease. However, none of these risk factors predict whether CLL will develop into Richter's syndrome.
Causes and symptoms
Scientists have yet to understand why some people develop Richter's syndrome and others do not. So far, no firm genetic or environmental links have been found.
When the transformation from CLL to Richter's syndrome occurs, a change occurs in the way the lymphocytes look under the microscope. In addition, lymph nodes swell, tumors grow rapidly in the lymph system, and the patient may experience fever, night sweats, and weight loss. The patient's health deteriorates rapidly and severely.
NED, RS/RT: The Good, The Bad and The Ugly
I have not been posting lately. Mainly, because nearly all of the news since we arrived home since Mary Jo's transplant has been good news. I figured that most people would think that "no news is good news."
Mary Jo celebrated her Day+100 last Wednesdy, August 14th. We are at Vanderbilt today for a PET scan, bone marrow biopsy, pulmonary function test, and meeting with the transplant coordinator, Dr. Nashitha Reddy, to evaluate the success of her transplant.
The results are in for everything, except for the bone marrow biopsy, and the report is fantastic - NED - No Evidence of Disease. The initials and words that every cancer patient want to hear. It will take a couple of days for bone marrow results, but there is no reason to expect the result will be any different from the others. Dr. Reddy has released Mary Jo back to the care of her oncologists in Louisville.
We owe a debt of gratitude to all of the doctors, nurses, nurse practitioners, aides, and social workers here at Vanderbilt. Needless to say Vanderbilt and the dedicated people who are performing miracles everyday here will always hold a special place in our hearts. Go Vandy!
Mary Jo has had a couple of mornings where she has had some unexplained dizziness, and it appears that the BCNU (carmustine) chemotherapy that she received just prior to her stem cell transplant on May 6th has caused some diastolic dysfunction with her heart.
Her blood labs since we returned home, all indicated that Mary Jo's MCL was in remission and the transplant was successful. Other than having some periods of fatigue, things have been pretty much back to normal with us.
Unfortunately, all the news that I have for you is not good. We received some disturbing news about Mary Jo's nephew, Billy, at the end of last week. Billy was diagnosed with Chronic Lymphocytic Leukemia (CLL) about the time that Mary Jo was diagnosed with MCL in October, 2009. Billy had completed a clinical trial here at Vanderbilt for refractory CLL patients using the BK inhibiting drug Ibrutinib.
Billy had been taking Ibrutinib for several weeks after the clinical trial ended back in June. His lymph nodes had shrunk. Everything was looking great. there was the possibility of an allo stem cell transplant somewhere far out in the future. Billy was feeling great both physically and mentally. he was full of hope for the future, and getting his life back to normal.
Billy had a CT scan a few weeks ago to evaluate the great progress that had been made with the Ibrutinib. Without any adverse symptoms, the CT indicated that lymph nodes in his back and in his chest area were enlarged. One near his heart measured 5cm.
When Billy's doctor at Vanderbilt gave Billy the bad news, he scheduled a CT guided biopsy of one of the affected lymph nodes last week. The pathology report indicates that Billy's CLL has transfomed into an aggressive blood cancer called diffuse large cell lymphoma. When this occurs the lymphoma is called Richter Syndrome RS, or Richter Transformation RT. I have included some information about RS/RT below
Last week while Billy was here at Vanderbilt, the lymph nodes in his back had grown to the point that they were pushing on his kidneys causing him excruciating pain. The pain became so bad Thursday night that he went to Vanderbilt's emergency room. He is now on a pain killer to manage the pain.
We were able to see Billy, and his friend, Rita, yesterday over at Hope Lodge before they went home. He will be coming back to Nashville later this week after the doctor decides which chemo would work best to reduce the size of the enlarged lymph nodes. The plan for him is to have an emergency allo stem cell transplant, using his sister's stem cells, as soon as possible.
Needless to say, this development has put a damper on things around here. RS/RT is so aggressive and can cause the patient's health to deteriorate so rapidly and severely that time is of the essence.
Please pray for Billy in the coming weeks and months, and thanks again for all of your wonderful thoughts and prayers for Mary Jo and I over the last few months. I will continue to keep you posted on Billy's journey. Hopefully, Mary Jo's "no news is good news" status will last for a long time. Amen
RICHTER'S SYNDROME
Definition
Richter's syndrome is a rare and aggressive type of acute adult leukemia that results from a transformation of chronic lymphocytic leukemia into diffuse large cell lymphoma.
Description
Leukemia is a group of cancers of the white blood cells. In adults, white blood cells are made in the bone marrow of the flat bones (skull, shoulder blades, ribs, hip bones). There are three main types of white blood cells: granulocytes, monocytes, and lymphocytes. Richter's syndrome concerns only the lymphocytes.
Lymphocytic leukemia develops from lymphocytes in the bone marrow. Unlike many other cancers in which a tumor starts growing in one particular location, lymphocytic leukemia is a disease of blood cells that travel throughout the body. In chronic (long-term) lymphocytic leukemia (CLL), lymphocytes do not follow a normal life cycle, and eventually, too many will exist in the blood. They are abnormal and do not fight infections well.
In a small percentage of people, CLL, even when it is treated, transforms into a new kind of aggressive blood cancer called diffuse large cell lymphoma. When this transformation occurs, it is called Richter's syndrome. The disease is named for the American pathologist Maurice Nathaniel Richter, who practiced medicine early in the twentieth century.
Demographics
Richter's syndrome is a disease of older adults. It is an extremely rare disease. In a recent year, the American Cancer Society estimates that, there were over 8,000 new cases of chronic lymphocytic leukemia, and that 98% of these were in adults. Of these new cases, 5% or less, will develop into Richter's syndrome.
In general, people who are more likely to get CLL are those who smoke, have been exposed to high doses of radiation, or who have had long-term exposure to herbicides, pesticides, or other chemicals. People who have close relatives (parent, siblings or children) with CLL are also more likely to develop the disease. However, none of these risk factors predict whether CLL will develop into Richter's syndrome.
Causes and symptoms
Scientists have yet to understand why some people develop Richter's syndrome and others do not. So far, no firm genetic or environmental links have been found.
When the transformation from CLL to Richter's syndrome occurs, a change occurs in the way the lymphocytes look under the microscope. In addition, lymph nodes swell, tumors grow rapidly in the lymph system, and the patient may experience fever, night sweats, and weight loss. The patient's health deteriorates rapidly and severely.
Mary Jo celebrated her Day+100 last Wednesdy, August 14th. We are at Vanderbilt today for a PET scan, bone marrow biopsy, pulmonary function test, and meeting with the transplant coordinator, Dr. Nashitha Reddy, to evaluate the success of her transplant.
The results are in for everything, except for the bone marrow biopsy, and the report is fantastic - NED - No Evidence of Disease. The initials and words that every cancer patient want to hear. It will take a couple of days for bone marrow results, but there is no reason to expect the result will be any different from the others. Dr. Reddy has released Mary Jo back to the care of her oncologists in Louisville.
We owe a debt of gratitude to all of the doctors, nurses, nurse practitioners, aides, and social workers here at Vanderbilt. Needless to say Vanderbilt and the dedicated people who are performing miracles everyday here will always hold a special place in our hearts. Go Vandy!
Mary Jo has had a couple of mornings where she has had some unexplained dizziness, and it appears that the BCNU (carmustine) chemotherapy that she received just prior to her stem cell transplant on May 6th has caused some diastolic dysfunction with her heart.
Her blood labs since we returned home, all indicated that Mary Jo's MCL was in remission and the transplant was successful. Other than having some periods of fatigue, things have been pretty much back to normal with us.
Unfortunately, all the news that I have for you is not good. We received some disturbing news about Mary Jo's nephew, Billy, at the end of last week. Billy was diagnosed with Chronic Lymphocytic Leukemia (CLL) about the time that Mary Jo was diagnosed with MCL in October, 2009. Billy had completed a clinical trial here at Vanderbilt for refractory CLL patients using the BK inhibiting drug Ibrutinib.
Billy had been taking Ibrutinib for several weeks after the clinical trial ended back in June. His lymph nodes had shrunk. Everything was looking great. there was the possibility of an allo stem cell transplant somewhere far out in the future. Billy was feeling great both physically and mentally. he was full of hope for the future, and getting his life back to normal.
Billy had a CT scan a few weeks ago to evaluate the great progress that had been made with the Ibrutinib. Without any adverse symptoms, the CT indicated that lymph nodes in his back and in his chest area were enlarged. One near his heart measured 5cm.
When Billy's doctor at Vanderbilt gave Billy the bad news, he scheduled a CT guided biopsy of one of the affected lymph nodes last week. The pathology report indicates that Billy's CLL has transfomed into an aggressive blood cancer called diffuse large cell lymphoma. When this occurs the lymphoma is called Richter Syndrome RS, or Richter Transformation RT. I have included some information about RS/RT below
Last week while Billy was here at Vanderbilt, the lymph nodes in his back had grown to the point that they were pushing on his kidneys causing him excruciating pain. The pain became so bad Thursday night that he went to Vanderbilt's emergency room. He is now on a pain killer to manage the pain.
We were able to see Billy, and his friend, Rita, yesterday over at Hope Lodge before they went home. He will be coming back to Nashville later this week after the doctor decides which chemo would work best to reduce the size of the enlarged lymph nodes. The plan for him is to have an emergency allo stem cell transplant, using his sister's stem cells, as soon as possible.
Needless to say, this development has put a damper on things around here. RS/RT is so aggressive and can cause the patient's health to deteriorate so rapidly and severely that time is of the essence.
Please pray for Billy in the coming weeks and months, and thanks again for all of your wonderful thoughts and prayers for Mary Jo and I over the last few months. I will continue to keep you posted on Billy's journey. Hopefully, Mary Jo's "no news is good news" status will last for a long time. Amen
RICHTER'S SYNDROME
Definition
Richter's syndrome is a rare and aggressive type of acute adult leukemia that results from a transformation of chronic lymphocytic leukemia into diffuse large cell lymphoma.
Description
Leukemia is a group of cancers of the white blood cells. In adults, white blood cells are made in the bone marrow of the flat bones (skull, shoulder blades, ribs, hip bones). There are three main types of white blood cells: granulocytes, monocytes, and lymphocytes. Richter's syndrome concerns only the lymphocytes.
Lymphocytic leukemia develops from lymphocytes in the bone marrow. Unlike many other cancers in which a tumor starts growing in one particular location, lymphocytic leukemia is a disease of blood cells that travel throughout the body. In chronic (long-term) lymphocytic leukemia (CLL), lymphocytes do not follow a normal life cycle, and eventually, too many will exist in the blood. They are abnormal and do not fight infections well.
In a small percentage of people, CLL, even when it is treated, transforms into a new kind of aggressive blood cancer called diffuse large cell lymphoma. When this transformation occurs, it is called Richter's syndrome. The disease is named for the American pathologist Maurice Nathaniel Richter, who practiced medicine early in the twentieth century.
Demographics
Richter's syndrome is a disease of older adults. It is an extremely rare disease. In a recent year, the American Cancer Society estimates that, there were over 8,000 new cases of chronic lymphocytic leukemia, and that 98% of these were in adults. Of these new cases, 5% or less, will develop into Richter's syndrome.
In general, people who are more likely to get CLL are those who smoke, have been exposed to high doses of radiation, or who have had long-term exposure to herbicides, pesticides, or other chemicals. People who have close relatives (parent, siblings or children) with CLL are also more likely to develop the disease. However, none of these risk factors predict whether CLL will develop into Richter's syndrome.
Causes and symptoms
Scientists have yet to understand why some people develop Richter's syndrome and others do not. So far, no firm genetic or environmental links have been found.
When the transformation from CLL to Richter's syndrome occurs, a change occurs in the way the lymphocytes look under the microscope. In addition, lymph nodes swell, tumors grow rapidly in the lymph system, and the patient may experience fever, night sweats, and weight loss. The patient's health deteriorates rapidly and severely.
Wednesday, July 31, 2013
Cancercare.Org: Listen To Mantle Cell Lymphoma Update Workshop Here
CLICK HERE to listen to the Cancercare Mantle Cell Lymphoma Update Workshop
Our Panel of Experts
Owen A. O'Connor, MD, PhD
- Professor of Medicine and Experimental Therapeutics, Director, Center for Lymphoid Malignancies, Department of Medicine, Co-Director, Program of Lymphoid Development and Malignancies, Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center - The New York Presbyterian Hospital
Oliver W. Press, MD, PhD- Member, Fred Hutchinson Cancer Research Center, Recipient, Dr. Penny E. Petersen Memorial Chair for Lymphoma Research, Professor of Medicine, University of Washington, Co-Chair, NCI Lymphoma Steering Committee
Brian Tomlinson, MPA, BSW- Chief Program Officer, Lymphoma Research Foundation
Sarah Kelly, MSW- Oncology Social Worker, CancerCare
- Professor of Medicine and Experimental Therapeutics, Director, Center for Lymphoid Malignancies, Department of Medicine, Co-Director, Program of Lymphoid Development and Malignancies, Herbert Irving Comprehensive Cancer Center, Columbia University Medical Center - The New York Presbyterian Hospital
- Member, Fred Hutchinson Cancer Research Center, Recipient, Dr. Penny E. Petersen Memorial Chair for Lymphoma Research, Professor of Medicine, University of Washington, Co-Chair, NCI Lymphoma Steering Committee
- Chief Program Officer, Lymphoma Research Foundation
- Oncology Social Worker, CancerCare
Owen A. O'Connor, MD, PhD
Packing for your first visit to a Regional Cancer Center
Whether you're traveling one mile or 1,000 miles to get there, packing for your first visit to a regional cancer center, such as MD Anderson in Houston can be a little daunting. After all, you've got a million other things on your mind, and you're not sure exactly what to expect when you get here.
So, the folks at MD Anderson asked several veteran cancer patients and caregivers what's on their must-bring list. We hope their answers -- shared below -- will help making packing for your first visit a little easier.
1. Patience and calming distractions
A lot of patience. Families are under a lot of stress when they come to MD Anderson, but it's important to understand that you may have to wait a while before seeing the doctor or getting your scans. Bring a book or headphones or something that will help calm you during the wait.
-- Sandra Bishnoi, breast cancer patient
2. Your list of questions
I always bring a written list of questions for my doctor, as well as a book, mobile device, laptop or something that will allow me to be productive and make the waiting more bearable.
-- Ed Steger, head and neck cancer survivor
3. Note-taking materials
Other than warm, comfy clothes and something to do while you wait, it's a great idea for caregivers to bring note-taking materials for appointments. It's very difficult to remember everything members of your care team said even an hour later, and detailed notes can be very helpful down the road.
-- Katie Narvarte, chronic myeloid leukemia caregiver
4. Warm, comfortable clothes and walking shoes
Pack a sweater or sweatshirt that zips or buttons up the front so you can have half of it on if you have an IV and get cold. MD Anderson always has warm blankets, but this makes it easier if you want to walk around. Also bring walking shoes and, most importantly, the person who makes you laugh the most.
-- Linda Ryan, cervical cancer survivor
Comfortable shoes, an extra change of clothes, snacks and something to read.
-- Mike Snyder, chondrosarcoma survivor
5. Healthy snacks, a list of medications and vitamins and a bag for jewelry
In addition to what others have suggested, I recommend bringing healthy snacks and a refillable water bottle, a list of all of your medications or other drugs and vitamins, as well as a list of your medical history of procedures.
If you are having tests done that require you to remove jewelry, bring a smaller bag to place jewelry in. This way, your jewelry won't get lost or you won't forget where you put it.
Perhaps most importantly, bring patience and a sense of humor.
-- Marcy Kurtz, breast cancer and uterine cancer survivor
6. Things to make your hospital room feel like home
If your first visit will be an overnight stay, bring things to make your room feel more like home. Bring your favorite pillow and pictures. If you have kids, bring one of their stuffed animals or some of their art to have them there with you as well.
If your first visit is a day visit, wear comfortable clothing and shoes. MD Anderson is large, and there's a lot of area to cover.
-- Jennifer Martin, melanoma caregiver
7. Pack lightly -- or bring a bag with wheels
I rely a lot on a book and my smartphone while I'm there. It helps to bring bottled water and fruit to snack on since there are usually many appointments in one day. I also always bring a sweater or blanket in case I get cold while waiting. That said, I make sure my bag is not super heavy or, if it is, that it has wheels.
-- Brandie Sellers, two-time breast cancer survivor
The Power of Hope: A Patient's Perspective
A thoughtful post from the young lady in London named Kat whom I asked you to pray for several times. Kat had an allogeneic stem cell transplant on May 23rd. She has had many ups and downs since she was first diagnosed with Double Hit B Cell Lymphoma in September, 2012. You may read the entire article and more about Kat's journey on her blog The C Word:
The reason I started this blog last September was to keep my family and friends informed of my progress and to document everything to do with my illness and recovery. I never anticipated that people I’ve never met before would be following me and would care about what happens to me – be it friends of friends, people from the triathlon/running world, doctors/nurses and anyone else. Either way, the interest is welcome, especially if I can help by using my experience or raise awareness of any kind. So today, I’m writing about my experience of being in hospital and from a perspective of one of my best friends, my sister-in-law. This blog post is for all the doctors and nurses out there, experienced, junior or in training – it’s all relevant.
I’ve touched on this subject in previous posts before, but I feel more than ever it is important to lay this out as it is, especially since my sister-in-law has just given birth and a few weeks on, she’s still in hospital fighting off complications.
As you all know, up until about a month ago, I’ve spent the past 10 months living half my life in hospital and half my life at home. My longest spell as an inpatient was just over three weeks. A lot of the times, I was restricted to my room or the ward, I wasn’t able to go outside or other parts of the hospital. I had everything done for me and I missed my freedom and independence. I felt helpless, frustrated, alone and the longer I was in hospital the more I got depressed, the more I started to lose motivation. Had it not been for Ade, I would have felt a lot worse, he kept me going. But the one thing that kept me going even more was the prospect of going home, and this hope was given to me by the doctors and nurses that were looking after me. Each time I was in hospital, I was given this hope and on several occasions, this hope was ripped out from under my feet and each time this happened, I would get even more depressed, frustrated and upset. The reason why the hope was taken away from me so often is because doctors and nurses don’t communicate properly with each other or simply say what the patient wants to hear. Here are a few examples:
-On one occasion, I was told by a nurse that if my blood levels were normal and my temperature didn’t spike, I would be able to go home the next day. The next day, they were normal, but the doctor said that I couldn’t go home unless they have been stable for 48 hours.
-Another occasion I was told by a nurse and a ward doctor that I would be allowed to go home for a few days before my blood levels dropped. However, my consultant said no and that I was to stay in. I wasn’t able to go home for another 8 days.
[...]
I’m not attacking what the nurses and doctors do, in fact I think the vast majority do an amazing job. This blog is just to highlight what it’s like from the other side – the patients. So if you’re a nurse or doctor, or indeed training to become one, remember this blog and remember how something so little can mean so much to a patient in hospital.
Read more here.
The reason I started this blog last September was to keep my family and friends informed of my progress and to document everything to do with my illness and recovery. I never anticipated that people I’ve never met before would be following me and would care about what happens to me – be it friends of friends, people from the triathlon/running world, doctors/nurses and anyone else. Either way, the interest is welcome, especially if I can help by using my experience or raise awareness of any kind. So today, I’m writing about my experience of being in hospital and from a perspective of one of my best friends, my sister-in-law. This blog post is for all the doctors and nurses out there, experienced, junior or in training – it’s all relevant.
I’ve touched on this subject in previous posts before, but I feel more than ever it is important to lay this out as it is, especially since my sister-in-law has just given birth and a few weeks on, she’s still in hospital fighting off complications.
As you all know, up until about a month ago, I’ve spent the past 10 months living half my life in hospital and half my life at home. My longest spell as an inpatient was just over three weeks. A lot of the times, I was restricted to my room or the ward, I wasn’t able to go outside or other parts of the hospital. I had everything done for me and I missed my freedom and independence. I felt helpless, frustrated, alone and the longer I was in hospital the more I got depressed, the more I started to lose motivation. Had it not been for Ade, I would have felt a lot worse, he kept me going. But the one thing that kept me going even more was the prospect of going home, and this hope was given to me by the doctors and nurses that were looking after me. Each time I was in hospital, I was given this hope and on several occasions, this hope was ripped out from under my feet and each time this happened, I would get even more depressed, frustrated and upset. The reason why the hope was taken away from me so often is because doctors and nurses don’t communicate properly with each other or simply say what the patient wants to hear. Here are a few examples:
-On one occasion, I was told by a nurse that if my blood levels were normal and my temperature didn’t spike, I would be able to go home the next day. The next day, they were normal, but the doctor said that I couldn’t go home unless they have been stable for 48 hours.
-Another occasion I was told by a nurse and a ward doctor that I would be allowed to go home for a few days before my blood levels dropped. However, my consultant said no and that I was to stay in. I wasn’t able to go home for another 8 days.
[...]
I’m not attacking what the nurses and doctors do, in fact I think the vast majority do an amazing job. This blog is just to highlight what it’s like from the other side – the patients. So if you’re a nurse or doctor, or indeed training to become one, remember this blog and remember how something so little can mean so much to a patient in hospital.
Read more here.
Saturday, July 27, 2013
Advice for cancer patients and survivors: Cancer-related fatigue
From
By Pamela Schlembach, M.D.
If you ask a patient who has just completed cancer treatment how he or she is feeling, very often the answer you'll get is, "Great!" Most patients are relieved to be through with their treatment and are ready to get on with their lives.
Dig a little deeper, though, and patients usually will confess that they're feeling a little tired.
Unfortunately, fatigue is a common side effect of both chemotherapy and radiation therapy. Most patients will be tired at some point in their treatment and often for a few months after they're finished.
However, there are some things you can do to help minimize the effects of fatigue and give you more energy so you can get back to feeling like your old self as soon as possible. Here are some tips to help get your energy back.
Maintain a healthy diet
Patients might get weary of hearing about the need to make dietary changes, but it's the simple truth. Foods that are good for you will help you feel better.
Patients might get weary of hearing about the need to make dietary changes, but it's the simple truth. Foods that are good for you will help you feel better.
Spinach, for example, is an excellent source of iron to help with fatigue. And, berries are filled with vitamin C, which may help protect your body from immune system deficiencies. In fact, any kind of fruits and vegetables you choose make great, healthy snacks and should be part of every meal.
If you're looking for healthier meals, MD Anderson Children's Hospital online cookbook is full of simple, healthy recipes designed especially for families on the go. It's an excellent resource for full meals, appetizers, snacks and desserts.
Try to exercise daily
When you're very tired, physical activity is often the last thing you want to do. However, curling up on the couch and watching television isn't going to increase your energy level.
When you're very tired, physical activity is often the last thing you want to do. However, curling up on the couch and watching television isn't going to increase your energy level.
Instead, try to get light exercise every day. A 20-minute walk is a perfect start, but you should aim to increase your physical activity over time. The American Cancer Society recommends that cancer patients and survivors get 150 minutes of aerobic exercise at moderate intensity or 75 minutes of vigorous aerobic exercise each week.
Frequently, cancer patients get frustrated when they can't complete a task due to overwhelming fatigue, but don't be too hard on yourself. Get your exercise when you're feeling most rested.
Practice good sleep habits
Good sleep and rest habits can also make a huge difference in your fight against cancer-related fatigue.
Good sleep and rest habits can also make a huge difference in your fight against cancer-related fatigue.
One way to make sure you sleep more soundly at night is to limit naps to less than 30 minutes. This way, your body won't get the message that it's okay to stay up later at night.
Also, avoid alcohol and caffeine, which can keep you awake at night.
It's also best to stick to a regular sleep schedule, including on weekends. Turn off your television an hour before bedtime and spend that time quietly doing things you enjoy, like reading a good book or listening to music.
Sometimes, anxiety and worry may keep you staring at the clock. Turn the clock around so you won't get frustrated by the late hour if you're still awake when you shouldn't be. And take advantage of the kind offers you get from family and friends to make you a meal or mow your lawn. This can help relieve your mind of some of the worries that may be keeping you up at night.
If you haven't fallen asleep after 15 minutes, go to another room, avoid mental stimulation and return to bed when you feel sleepy.
Talk to your doctor if fatigue persists
If these strategies don't work for you, be sure to talk to your doctor about your fatigue. He or she may be able to identify certain prescriptions or habits that are causing your fatigue. Your doctor may also prescribe a medication to help reduce your fatigue or refer you to MD Anderson's Fatigue Clinic.
If these strategies don't work for you, be sure to talk to your doctor about your fatigue. He or she may be able to identify certain prescriptions or habits that are causing your fatigue. Your doctor may also prescribe a medication to help reduce your fatigue or refer you to MD Anderson's Fatigue Clinic.
Remember, fatigue is common among cancer patients and caregivers, but it shouldn't become your way of life. By making changes, you should be able to feel less tired and have more energy to do the things you want to do during and after cancer treatment.
Pamela Schlembach, M.D., is a radiation oncologist at MD Anderson in The Woodlands.
Pamela Schlembach, M.D., is a radiation oncologist at MD Anderson in The Woodlands.
Monday, July 22, 2013
I have cancer, but that's not all!
Another article from the Huffington Post written by Karen Diamond. Karin Diamond is a freelance writer, editor and communications specialist. She lives in Tariffville, Connecticut, with her husband and vivacious yellow dog. Karin holds a bachelor’s degree in English and Journalism and has worked as a newspaper reporter, city magazine editor, and in marketing communications for an arts nonprofit and an inner-city hospital. She blogs about the adventures of being a young adult living with -- and beyond -– disease at www.eyespeeledalways.com.
I have cancer.
I also have a quarter-sized beauty mark on my right hip. My dad has a matching one that's half-dollar-size and my sister's is the size of a dime. Same exact spot.
I have recurrent, chemo-resistant Hodgkin Lymphoma. It persists despite slews of drug combinations, radiation, two stem-cell transplants, immunotherapy, and clinical trials of chemicals only rats endured before me.
I now also have soft ringlets atop my head after 25 years of limp straw -- courtesy of chemo's kinking affect on my follicles; the gift of long, dainty fingernails passed down from my Nonna; and a warped left pinky toenail that just can't get it together, despite attempts to normalize it with polish.
I have three-inch scars within each armpit, holding together skin that was once sliced open to get out malignant lymph nodes. There is another slash across my trachea, where a tumor was pulled from my chest.
I also have lanky chicken arms that I love because they make me feel like a dancer, a booty worth shaking, mostly hazel eyes that change color with my wardrobe choice, and teeth so strong a cavity has yet to break through.
I have a catheter implanted in my chest that sticks out like a third nipple, but allows easy streaming of drugs, blood and fluids. My arm veins are too scar-ridden for IV use. The tubing is visible through my thin chest skin and gives me a robotic quality. Surrounding the nipple are thick, heavy scars, formed when my skin has groaned and stretched at the device's weight during four years of use.
I have a good man who loves me: sick me, healthy me, crazy me. He is strong, yet gentle, open-minded, compromising, patient, and thoughtful. He can be vocal at the right times and smartly quiet at the right times, too. He can fix anything, build anything, lift anything -- jump fences, ski glades, refurbish a piano, transform discarded wood into incredible art pieces. I have a Renaissance man who cuddles and supports me, but also pushes me past my boundaries to my best self, not allowing excuses -- in the gentlest way possible.
I have discolored scratches and patch marks all over my torso from chemo burning my tissues from the inside out. I bear the scars someone might guess I'd gotten from a horribly failed suicide attempt with a razor -- though they'd be wrong.
I have a good dog, a 60-pound, blonde ball of unbridled love. She is receptive and conscious -- playful or cuddly at all the right times. She is my trusty companion, my confidante. I love every drop of her slobber, every whiff of her doggy breath, every painful pinch from her paw as she tries to wriggle her way on top of me like a lap dog. I love every moment that I get to roll the silken softness of her ear in my fingers and smell its distinctive sweetness.
I have cancerous cells within my bones, spreading in a confined space, compromising the strength of my pelvis, my hips, my femurs, and my sacrum and encroaching on my vertebrae. This means compounded chronic pain.
I have intelligence and creativity that allow me to practice writing -- a craft that brings me an incredible amount of joy and fulfillment.
I have consistent anemia and compromised lung capacity, both side effects from toxic treatments, making it difficult at times to keep up, catch my breath, or stand up without seeing stars.
I have the habits of a 30-year-old woman: I have a book club, I walk and kayak and practice yoga. I cook as creatively and healthfully as I can. I love trying new restaurants and taking in good films, good books and good art. I read the New Yorker and Cosmo. I cuddle up nightly with my husband and dog to watch Brian Williams give the news, while we eat dinner cross-legged on our beloved couch. I like pedicures and natural lip gloss, statement jewelry and scarves. I love NPR and MTV.
I have been living with cancer since age 26 -- living with the disease, the side effects, the treatment, the anguish, the questioning, the reconciliations, and the adaptations.
I own a home with my husband that was once a 19th century church, filled with history and love. It sits on a dead-end street, butting up to protected wooded trails along a mountain ridge. A river fit for kayaking and paddle-boarding is a short walk away.
I have endured treatments so harsh they left me with the sex drive of an elderly woman, stripped me of my fertility and robbed me of the possibility of pregnancy.
I have a family that can handle my wildly independent and indignant ways, somehow knowing how and when I need to be coddled even when I don't understand it myself. And, I have friends -- great friends. Each offers such special qualities, and they all meld harmoniously into one big lovefest that I can tap into at any time. I have perfect strangers that send me love and light and hope and big pushes every day.
I have very few viable treatment options left. We've tried most everything. My life depends on the speed of cancer research to save me.
I have cancer, and I'm eating a plum on a lounge chair in the unexpected spring sun. I have toxic chemotherapy currently working to kill every rapidly dividing cell in my body, but the sound of my husband's saws whirring in his workshop, the site of Sam Dog rolling her tennis ball down the driveway to any passerby who'll throw with her, and the everyday normalcy of car doors shutting and far-off radios playing The Dead makes it somehow okay.
I have a good, no a great, no an utterly balls-out fabulous life and more importantly, the capacity to understand its impermanence. Sure, I have some things that I don't need, ahem, cancer, but I have everything I do need. Right here. Right now. I revel in that comfort and wonder how I got it so good.
Sure, I lose perspective. Sometimes I want to leave it all, unable to handle the weight of my fate staring me in the face. But then good days come, and I forget about the cancer, the chemo, the infertility, the scars for a while, so blinded by the gratitude that I get to be here, to do this, to enjoy this world and the people in it.
I have cance
Thursday, July 11, 2013
New Ibrutinib FDA Filing Submitted
Janssen Research & Development, LLC announced the submission of a New Drug Application for ibrutinib to the U.S. Food and Drug Administration (FDA) for its use in the treatment of previously treated patients with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL), and for its use in the treatment of previously treated patients with mantle cell lymphoma (MCL). The regulatory submission for ibrutinib is supported by data from two pivotal Phase 2 studies, one in relapsed/refractory CLL/SLL (PCYC-1102) and one in relapsed/refractory MCL (PCYC-1104), both of which were published in The New England Journal of Medicine online on June 19, 2013. Ibrutinib is a novel Bruton's tyrosine kinase (BTK) inhibitor being jointly developed by Janssen and Pharmacyclics, Inc. for the treatment of B-cell malignancies.
If approved, ibrutinib would be the first in a class of oral BTK inhibitors and is one of the first medicines to file for FDA approval via the new Breakthrough Therapy Designation pathway. Ibrutinib will be co-commercialized in the U.S. by Janssen Biotech, Inc. and Pharmacyclics.
"The FDA submission is another important milestone for ibrutinib since we formed our strategic partnership with Pharmacyclics just 18 months ago," said Peter F. Lebowitz, M.D., Ph.D., Global Oncology Head, Janssen. "Both companies recognize that there is great unmet need among these patient populations, and together in close collaboration with the FDA, as part of its Breakthrough Therapy Designation pathway, we have been able to accelerate the ibrutinib development program for the benefit of patients."
Breakthrough Therapy Designation is intended to expedite the development and review time for a potential new medicine. To date, ibrutinib has been granted three Breakthrough Therapy Designations by the FDA as a monotherapy for the treatment of: patients with CLL/SLL with deletion of the short arm of chromosome 17 (del 17p), patients with relapsed/refractory MCL who have received prior therapy, and patients with Waldenstrom's macroglobulinemia (WM).
CLL/SLL and MCL are hematologic malignancies belonging to a type of cancers that originate from B-cells (a type of white blood cell, or lymphocyte). (CLL and SLL are considered to be different manifestations of the same underlying disease as they share similarities in signs and symptoms, genetic features, disease progression and treatment.) Data suggest ibrutinib covalently bonds to BTK in malignant B-cells, shutting down their major growth and survival pathway.
About Chronic Lymphocytic Leukemia and Small Lymphocytic Lymphoma
Chronic Lymphocytic Leukemia (CLL) is a slow-growing blood cancer that most commonly originates from B-cells, a type of white blood cell (lymphocyte). B-cells are part of the immune system and play an important role in fighting infection in the body. CLL is the most common adult leukemia in the Western World. Approximately 15,680 patients in the U.S. are diagnosed each year with CLL. The prevalence of CLL is approximately 113,000 in the U.S. CLL is a chronic disease of the elderly with a five-year survival rate of approximately 82 percent. Patients commonly receive multiple lines of treatment over the course of their disease.
In CLL, the genetic mutation del 17p occurs when part of chromosome 17 has been lost. CLL patients with del 17p have poor treatment outcomes. Del 17p is reported in seven percent of treatment-naive CLL cases, with approximately 20 to 40 percent of relapsed/refractory patients harboring the mutation. When cancer cells are located mostly in the lymph nodes, the disease is called SLL.
About Mantle Cell Lymphoma
MCL is a B-cell malignancy, an aggressive type of B-cell non-Hodgkin lymphoma (NHL) that usually occurs in older adults. The disease typically begins in the lymph nodes, but can spread to other tissues, such as bone marrow, liver, and spleen[3]. Patients typically survive an average of five years. Ibrutinib targets the B-cell receptor pathway via inhibiting BTK, a critical mediator in malignant B-cell growth and proliferation. In the U.S., there are approximately 5,000 new cases of MCL each year.
About Ibrutinib
Ibrutinib is an investigational, oral Bruton's tyrosine kinase (BTK) inhibitor. The effectiveness and safety of ibrutinib alone or in combination with other treatments is being studied in several B-cell malignancies. Janssen Biotech, Inc. and Pharmacyclics entered a collaboration and license agreement in December 2011 to co-develop and co-commercialize ibrutinib. Details about the complete ibrutinib clinical program are posted on clinicaltrials.gov.
About Janssen Research & Development and Janssen Biotech, Inc.
At Janssen, we are dedicated to addressing and solving some of the most important unmet medical needs of our time in oncology, immunology, neuroscience, infectious diseases and vaccines, and cardiovascular and metabolic diseases. Driven by our commitment to patients, we develop innovative products, services and healthcare solutions to help people with serious diseases throughout the world. Beyond its innovative medicines, Janssen is at the forefront of developing education and public policy initiatives to ensure patients and their families, caregivers, advocates and health care professionals have access to the latest treatment information, support services and quality care.
Janssen Research & Development and Janssen Biotech are two of the Janssen Pharmaceutical Companies of Johnson & Johnson. Please visit http://www.janssenrnd.com or www.janssenbiotech.com for more information or call 1-800-526-7736 for U.S. medical inquiries. Follow us on Twitter at www.twitter.com/JanssenUS.
Wednesday, July 10, 2013
A cancer survivor learns to accept a compliment
By Linda Ryan
Why is it so difficult for many of us -- especially women -- to receive a compliment?
For those of us who've undergone cancer treatment and endured changes in our appearance, accepting a compliment can be especially challenging.
After all, it seems to be most people's natural reflex to put themselves down when paid a compliment. Think of how many times you have heard someone or been that someone who did not receive a compliment well.
[...]
I am 45 years old, and people tell me that I look great. I don't know if it's a compliment because they think I really do look good for my age or if they think I look good because I am a three-time cancer survivor and maybe I should look broken.
Whatever the explanation, I now say thank you when people tell me I look great.
After all, I am thankful for my life and that I survived treatment. But more than that, my identity isn't my appearance. It's so much more. Focusing on the outside appearance and what I don't have seems petty and unattractive.
Admittedly, this hasn't been easy for me. I am very aware of my response when I don't receive a compliment well. I am still working on refraining from launching into the thoughts that are lingering in my head about what I think about my hair or my skin or the outfit that I might be wearing. I am working on accepting the compliment gracefully.
Linda Ryan thought she had checked cancer off her list. Having just run her first marathon, it was hard to imagine that her cervical cancer had returned after seven years. Cancer chose the wrong woman. She was ready to battle cancer for the third time with health, laughter and friendship. Follow Linda Ryan at MeStrong.net.
Is God Unfair!
All of us want Plan A, where life is good. For our family, life has been about how we handle Plan B. We lost our daughter Michelle, age 3, to cancer in 1977. I thought I'd never laugh again. I believed God let me down or was dead. I lost my faith. GOD PROVED OTHERWISE!
When we almost lost our son Michael, age 17, in a horrendous three-wheeler accident in 1987, I almost quit seminary, thinking I couldn't take any more. GOD PROVED OTHERWISE!
Our daughter Leah, age 22, was diagnosed with Non-Hodgkins lymphoma in 2002 right before entering Medical School. She survived chemo and a bone marrow transplant. But complications with rejection of her brother's stem cells made her life touch-and-go for 9 years. The doctors really didn't feel life would get much better. GOD PROVED OTHERWISE!
When my husband Lavern was diagnosed with Mantle Cell lymphoma in 2004, his life expectancy was 18 months. GOD PROVED OTHERWISE. God gave us seven years! When Lavern was at his worst, God was at His best. In 2011 the U of MN found a different anti-rejection drug for Leah that has been miraculously successful. GOD PROVED OTHERWISE!
Many lives are devastated by cancer, death, and other tragedies. I have a passion to help inspire others to discover or reaffirm faith. God is real! God can be trusted! God is present! God is enough!
When we almost lost our son Michael, age 17, in a horrendous three-wheeler accident in 1987, I almost quit seminary, thinking I couldn't take any more. GOD PROVED OTHERWISE!
Our daughter Leah, age 22, was diagnosed with Non-Hodgkins lymphoma in 2002 right before entering Medical School. She survived chemo and a bone marrow transplant. But complications with rejection of her brother's stem cells made her life touch-and-go for 9 years. The doctors really didn't feel life would get much better. GOD PROVED OTHERWISE!
When my husband Lavern was diagnosed with Mantle Cell lymphoma in 2004, his life expectancy was 18 months. GOD PROVED OTHERWISE. God gave us seven years! When Lavern was at his worst, God was at His best. In 2011 the U of MN found a different anti-rejection drug for Leah that has been miraculously successful. GOD PROVED OTHERWISE!
Many lives are devastated by cancer, death, and other tragedies. I have a passion to help inspire others to discover or reaffirm faith. God is real! God can be trusted! God is present! God is enough!
Helpful Hints For Travelling To MD Anderson In Houston
Help hints from Linda over at ME Strong
I recently wrote the following information to share with others who are on their way to Houston for consultations. The opinions listed below are my opinions and not those of MD Anderson's.
Hearing a diagnosis of cancer for yourself or a loved one is stressful. Figuring out logistics regarding travel to a different city that you are going to for treatment or a second opinion doesn’t need to add stress to an already difficult situation.
I live in Florida but participated in a clinical trial at MDA in Houston for my recurrence with cervical cancer. The clinical trial that I participated in increased my odds of survival by 15-25%. Considering my odds were 15% with traditional chemo, I was grateful to have found the trial. Since my first visit to MDA in August, 2011 I have travelled from my home in Florida for 8 rounds of chemo and many follow up appointments. I have found an equation that eases the stress for me and want to share my experience.
Read the entire article here...
I recently wrote the following information to share with others who are on their way to Houston for consultations. The opinions listed below are my opinions and not those of MD Anderson's.
Hearing a diagnosis of cancer for yourself or a loved one is stressful. Figuring out logistics regarding travel to a different city that you are going to for treatment or a second opinion doesn’t need to add stress to an already difficult situation.
I live in Florida but participated in a clinical trial at MDA in Houston for my recurrence with cervical cancer. The clinical trial that I participated in increased my odds of survival by 15-25%. Considering my odds were 15% with traditional chemo, I was grateful to have found the trial. Since my first visit to MDA in August, 2011 I have travelled from my home in Florida for 8 rounds of chemo and many follow up appointments. I have found an equation that eases the stress for me and want to share my experience.
Read the entire article here...
Monday, July 8, 2013
Three University of Louisville fraternity brothers perfect stem-cell matches
When three Sigma Chi fraternity brothers at the University of Louisville signed up for a stem cell donor registry in 2009, they didn’t think it was a big deal.
All three turned out to be perfect matches for patients in need of stem cells, and all three made donations.
Read entire Courier Journal article here...
Mary Jo Update #47 - Day+63 Partying & Decluttering Our Lives
Just wanted to let everyone know how Mary Jo and I are doing. It has been 63 days since Mary Jo's transplant at Vanderbilt. Her strength is slowly coming back. The doctors told us that it would take 100 days for things to get close to being normal.
Amazingly, Mary Jo has felt strong enough to tackle a decluttering project around our home. We thought we had decluttered when we moved into our condo almost 14 years ago. But, we still carried much too much with us here. Then over time, we added to it. After donation pick ups and a truck load to a Goodwill store on Friday, Mary Jo deserved a day of rest yesterday.
I found an article about decluttering your home and your life on the Internet. Here's the first couple of paragraphs:
Obviously, the clutter was causing Mary Jo more stress than me. But, I did get in the spirit yesterday by decluttering the desktop on my iPad. I don't think being a neat freak is in my genes. The article is correct about taking small steps at a time whether we are decluttering our home, our iPad, or our lives. I have promised to do my part in maintaining the decluttered environment over the long run.
Another thing to pass along that I hope think you will get a chuckle out of. A couple of friends had posted this on their Facebook pages. I think they got it from the Arkansas Storm Report FB page. After three funerals last week, I needed a little humor, even if it's graveside humor:
As a guitarist, I play many gigs. Recently I was asked by a funeral director to play at a graveside service for a homeless man. He had no family or friends, so the service was to be at a pauper’s cemetery in the back country. As I was not familiar with the backwoods, I got lost.
I finally arrived an hour late and saw the funeral guy had evidently gone and the hearse was nowhere in sight. There were only the diggers and crew left and they were eating lunch.
I felt badly and apologized to the men for being late. I went to the side of the grave and looked down and the vault lid was already in place. I didn’t know what else to do, so I started to play.
The workers put down their lunches and began to gather around. I played out my heart and soul for this man with no family and friends. I played like I’ve never played before for this homeless man.
And as I played ‘Amazing Grace,’ the workers began to weep. They wept, I wept, we all wept together. When I finished I packed up my guitar and started for my car. Though my head hung low, my heart was full.
As I opened the door to my car, I heard one of the workers say, “I never seen nothin’ like that before and I’ve been putting in septic tanks for twenty years.”
Apparently, I’m still lost…
h/t Shannon Age and Julie Fagan
On Saturday evening, we attended the 50th Anniversary Party for my brother, Lou, who our family calls Cookie, and his wife, Paula. It was a wonderful evening for a wonderful couple. It was the first time my siblings and I had all been together in a number of years, since one lives in Maryland and another in Virginia. Here's some pictures:
Paula and Lou
Our family
My sibs: Lou, me, Steve (Maryland), David (Virginia), Dan, Paul, and our onliest sister, Kim
Mary Jo in the center with my sister, Kim, and my cousin, Jamie
My big brother and I
Thanks again for all of your thoughts and prayers for us. We will be going back to Vanderbilt on August 19th for tests to evaluate the success of Mary Jo's stem cell transplant. Have a great week.
Amazingly, Mary Jo has felt strong enough to tackle a decluttering project around our home. We thought we had decluttered when we moved into our condo almost 14 years ago. But, we still carried much too much with us here. Then over time, we added to it. After donation pick ups and a truck load to a Goodwill store on Friday, Mary Jo deserved a day of rest yesterday.
I found an article about decluttering your home and your life on the Internet. Here's the first couple of paragraphs:
Excessive clutter is often a symptom and a cause of stress and can affect every facet of your life, from the time it takes you to do things to your finances and your overall enjoyment of life. Clutter can distract you, weigh you down, and in general it invites chaos into your life. Often times, however, tackling the clutter can seem an insurmountable task if you don’t know where or how to start. By devoting a little of your time to getting rid of the clutter in your life and maintaining things relatively clutter-free , you’ll reap the rewards of pleasing living areas, reduced stress, and a more organized and productive existence.
The best way to tackle the decluttering of your home, your work space, and your life is to take things one small step at a time. Combined, small steps will lead to big improvements that will be easier to maintain over the long-run.
Obviously, the clutter was causing Mary Jo more stress than me. But, I did get in the spirit yesterday by decluttering the desktop on my iPad. I don't think being a neat freak is in my genes. The article is correct about taking small steps at a time whether we are decluttering our home, our iPad, or our lives. I have promised to do my part in maintaining the decluttered environment over the long run.
Another thing to pass along that I hope think you will get a chuckle out of. A couple of friends had posted this on their Facebook pages. I think they got it from the Arkansas Storm Report FB page. After three funerals last week, I needed a little humor, even if it's graveside humor:
As a guitarist, I play many gigs. Recently I was asked by a funeral director to play at a graveside service for a homeless man. He had no family or friends, so the service was to be at a pauper’s cemetery in the back country. As I was not familiar with the backwoods, I got lost.
I finally arrived an hour late and saw the funeral guy had evidently gone and the hearse was nowhere in sight. There were only the diggers and crew left and they were eating lunch.
I felt badly and apologized to the men for being late. I went to the side of the grave and looked down and the vault lid was already in place. I didn’t know what else to do, so I started to play.
The workers put down their lunches and began to gather around. I played out my heart and soul for this man with no family and friends. I played like I’ve never played before for this homeless man.
And as I played ‘Amazing Grace,’ the workers began to weep. They wept, I wept, we all wept together. When I finished I packed up my guitar and started for my car. Though my head hung low, my heart was full.
As I opened the door to my car, I heard one of the workers say, “I never seen nothin’ like that before and I’ve been putting in septic tanks for twenty years.”
Apparently, I’m still lost…
h/t Shannon Age and Julie Fagan
On Saturday evening, we attended the 50th Anniversary Party for my brother, Lou, who our family calls Cookie, and his wife, Paula. It was a wonderful evening for a wonderful couple. It was the first time my siblings and I had all been together in a number of years, since one lives in Maryland and another in Virginia. Here's some pictures:
Paula and Lou
Our family
My sibs: Lou, me, Steve (Maryland), David (Virginia), Dan, Paul, and our onliest sister, Kim
Mary Jo in the center with my sister, Kim, and my cousin, Jamie
My big brother and I
Thanks again for all of your thoughts and prayers for us. We will be going back to Vanderbilt on August 19th for tests to evaluate the success of Mary Jo's stem cell transplant. Have a great week.
Thursday, July 4, 2013
Prayers requested: Another bump in the road for Kat
Another bump in the road for the young lady in London named Kat whom I asked you to pray for back in April and May. Kat had an allogeneic stem cell transplant on May 23rd. Here's an except from her blog, The C Word, about her journey after her stem cell transplant:
Please keep Kat, and Ade, her husband and caregiver, in your prayers. Her courageous fight with Double Hit B Cell Lymphoma through all of the bumps in the road since she first started blogging in September, 2012 has been incredible .
Early last week, I had a blood test to check the usual levels which were all fine except one of them. The one that wasn’t fine was the CMV screening. CMV stands for Cytomegalovirus which is a virus I have in my body that has reactivated which happens with donor stem cell transplants. Ordinarily the body can fight the virus off, but as my immune system is still being suppressed, my body is unable to do that so I had to be admitted for a brutal antiviral treatment to get rid of it.
CMV is one of the most common viruses and it’s believed that half the population has it and it simply lays dormant, or if it does reactivate, the body is able to fight it off without you even knowing it has been reactivated. This virus is related to the one that causes chicken pox and glandular fever.
There are a few different treatments available for CMV reactivation and I have the nastiest. As I’m so fresh out of transplant, my blood counts aren’t strong or stable enough to have outpatient treatment hence why I have to stay here, so I’m given an antiviral treatment called Foscarnet twice a day, 12 hours apart. Foscarnet is EVIL, the side effects are horrendous and I can honestly say that some chemo drugs don’t make me feel as nauseas as this stuff. Foscarnet is quite toxic to the kidneys so during each infusion, I’m also given a litre of fluids via IV to protect my kidneys and bladder. Pretty much every other day, I have to have calcium, phosphates, magnesium and potassium to keep my levels up. Foscarnet clings onto the salts in the body and depletes the body of essential minerals it needs.
Please keep Kat, and Ade, her husband and caregiver, in your prayers. Her courageous fight with Double Hit B Cell Lymphoma through all of the bumps in the road since she first started blogging in September, 2012 has been incredible .
Tuesday, July 2, 2013
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