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.
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