Hepatosplenic T-cell Lymphoma
Comments
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NEWLY DX WITH CROHN,S NEED HELP!!erm said:Latest FDA numbers on HSTCL and immune-suppressive treatment
It has been awhile since I posted, but I wanted to share with everyone who comes to this site the latest FDA data on HSTCL and its relationship to immune-suppressive treatment of Crohn's Disease (CD) or Ulcerative Colitis (UC). I have been contacted by several families who viewed this site when it was first suggested that their children/spouses take immune suppressants such as Remicade, Humira, Imuran, 6-MP, or various combinations of these drugs, to treat CD/UC. I especially hope to reach those people with this message.
According to the latest FDA report, dated 8/26/10, there are now 41 known cases of HSTCL among those receiving immune-suppression to treat CD/UC, up from only 8 cases in 2007. This coincides with the increase in use of/duration of immune-suppression to treat CD/UC. Of the 38 cases in which the patient's gender was known, 34 occurred in men, mostly between the ages of 15 and 35. PLEASE: IF YOU HAVE CD/UC, AND IT HAS BEEN RECOMMENDED THAT YOU BEGIN TREATMENT WITH AN IMMUNE-SUPPRESSIVE DRUG, ASK YOUR DOCTOR IF HE/SHE IS AWARE OF THE MANY DEATHS RESULTING FROM THIS TREATMENT, AND WHETHER, IN THEIR OPINION, SURGICAL OR OTHER TREATMENTS MIGHT BE SAFER.
My best to all of you--including family members--who suffer from CD, UC, or HSTCL.
erm
Ed Morawetz (Father of Chris, died of HSTCL on May 2, 2008, at the age of 20)
ed.morawetz@verizon.net
PS to those on this site with family members who have been diagnosed with HSTCL: Please know that I and other members of this group are exploring every possible means of increasing public awareness of HSTCL resulting from immune-suppressant treatment of CD/UC. I am also "badgering" FDA to publicly release the above numbers, which at present can only be obtained through the Freedom of Information Act or a member of Congress.
DEAR ED,
I just recently became a member of this website on behave of my daughter.The dr.s are
peressuring us to put our daughter on 6mp or remicade.I have done exstensive research and were holding off till second opinion next week.
How did you get those numbers about the t-cell lymphma?Your courage to help others to honor your son is remarkable.Please continue to get the FDA to be accountable and help.
regards,
kathy0 -
NEWLY DX WITH CROHN,S NEED HELP!!erm said:Latest FDA numbers on HSTCL and immune-suppressive treatment
It has been awhile since I posted, but I wanted to share with everyone who comes to this site the latest FDA data on HSTCL and its relationship to immune-suppressive treatment of Crohn's Disease (CD) or Ulcerative Colitis (UC). I have been contacted by several families who viewed this site when it was first suggested that their children/spouses take immune suppressants such as Remicade, Humira, Imuran, 6-MP, or various combinations of these drugs, to treat CD/UC. I especially hope to reach those people with this message.
According to the latest FDA report, dated 8/26/10, there are now 41 known cases of HSTCL among those receiving immune-suppression to treat CD/UC, up from only 8 cases in 2007. This coincides with the increase in use of/duration of immune-suppression to treat CD/UC. Of the 38 cases in which the patient's gender was known, 34 occurred in men, mostly between the ages of 15 and 35. PLEASE: IF YOU HAVE CD/UC, AND IT HAS BEEN RECOMMENDED THAT YOU BEGIN TREATMENT WITH AN IMMUNE-SUPPRESSIVE DRUG, ASK YOUR DOCTOR IF HE/SHE IS AWARE OF THE MANY DEATHS RESULTING FROM THIS TREATMENT, AND WHETHER, IN THEIR OPINION, SURGICAL OR OTHER TREATMENTS MIGHT BE SAFER.
My best to all of you--including family members--who suffer from CD, UC, or HSTCL.
erm
Ed Morawetz (Father of Chris, died of HSTCL on May 2, 2008, at the age of 20)
ed.morawetz@verizon.net
PS to those on this site with family members who have been diagnosed with HSTCL: Please know that I and other members of this group are exploring every possible means of increasing public awareness of HSTCL resulting from immune-suppressant treatment of CD/UC. I am also "badgering" FDA to publicly release the above numbers, which at present can only be obtained through the Freedom of Information Act or a member of Congress.
DEAR ED,
I just recently became a member of this website on behave of my daughter.The dr.s are
peressuring us to put our daughter on 6mp or remicade.I have done exstensive research and were holding off till second opinion next week.
How did you get those numbers about the t-cell lymphma?Your courage to help others to honor your son is remarkable.Please continue to get the FDA to be accountable and help.
regards,
kathy0 -
Hicatscanmom said:WORRIED MOM TOO!!
MY DAUGHTER HAS RECENTLY BEEN DIAGNOSED WITH CHROHN,S DISEASE.SHE IS ONLY FOURTEEN
AND WE ARE ALSO BEING PRESSURED AS PARENTS TO PUT HER ON SOME MEDICATION LIKE 6MP AND REMICADE.FRIGHTENED OF ALL THE TERRIBLE SIDE EFFECTS,WE HAVE CHOSEN TO GET A SECOND OPININ AT MAYO CLINIC.WISH TO GET ANY HELP FROM SOMEONE THAT HAS ANY SUCCESS WITH HOMEOPATHIC
METHODS.THESE DRUGS SEEM LIKE POISEN FOR SUCH YOUNG ,GROWING CHILDREN TO BE ON.
SO SCARED SHE WILL DEVEOPE CANCER BUT HER DR SAYS SURGERY IS NOT AN OPTION UNLESS WE TRY THE MEDICINES FIRST.
CAN SOMEONE PLEASE HELP ME WITH THEIR THOUGHTS.
I am 27 years old and I was diagnosed with HTCL last month. I was a veterinary student living in Colororado when I started getting fevers and elevated liver enzymes. I took a leave of absence from school and moved back to New York to be with my family. I am currently undergoing round 3 of IVAC chemo at Sloan Kettering. We just found out that my sister and I are a perfect match for transplant so hopefully that will happen in the next few weeks. This site has been very helpful to me to hear everyone elses stories. I have never met anyone with my disease. Thank you all for posting and I will keep you updated with my progress.
A note about the risks of immunosuppressive medications...
I have crohns disease and had been treated with azothioprine (imuran) as well as Humira for the past several years. When you are on this side of things, where you are one of the unlucky few to experience a negative side effect to a drug, it is easy to go back and try to say how dangerous this drug is. I want to STRONGLY urge people to look at the real numbers, and make the risk assessment for themselves. The reality is that crohns disease is a dangerous and deadly disease. There are only a handful of good treatment options for it. Hundreds of thousands of people worldwide are treated for autoimmune diseases with the drugs mentioned above and only a minuscule fraction end up with the crap luck hand that we have been dealt. I did read the labels on my drugs (as I always do, and you should too). I knew that there was a very small chance of getting lymphoma. But there was a very good chance of controlling my crohns so I decided to take the medication anyway. I do not regret my past decisions and I do not blame my GI doctor.
Let me be clear that I do believe that the majority of HTCL cases are caused by an adverse effect to immunosuppressive drugs. I do believe that this is an area that needs further research. I do believe that everyone should report all adverse effects of any drugs to the FDA. And I do believe that all doctors need to do a better job of having HONEST risk assessment conversations about all drugs that they prescribe. But I also believe that if you have crohns you need to do everything you can to control it. (I personally found The Paleo Diet to be a life saver!) The dangers of crohns are real, and your gastroenterologist should be knowledgeable about all of the risks and benefits to the meds he/she prescribes. Remember they want whats best for you too! Sometimes you have to take a risk to get a benefit. The only way out is through.0 -
Newly DX with Crohn's, need help!!catscanmom said:NEWLY DX WITH CROHN,S NEED HELP!!
DEAR ED,
I just recently became a member of this website on behave of my daughter.The dr.s are
peressuring us to put our daughter on 6mp or remicade.I have done exstensive research and were holding off till second opinion next week.
How did you get those numbers about the t-cell lymphma?Your courage to help others to honor your son is remarkable.Please continue to get the FDA to be accountable and help.
regards,
kathy
Dear Kathy,
I'm so sorry to be so late getting back to you. Until today, I haven't been on the CSN site for over 6 months, and haven't yet figured out how to get notified via email when there's a new post.
The short answer to your question is that the numbers I've posted on this site have been compiled by the Food and Drug Administration (FDA), which is the Federal agency responsible for approving all prescription drugs, and for monitoring the safety of drugs after their approval. Since my death from HSTCL in May of 2008, I have been badgering FDA to develop a better way of capturing information about HSTCL and its link to immune-suppressive treatment of Crohn's and Colitis. This April, for the first time, FDA made these numbers available to the public on the internet at FDA.gov/Drugs (I had previously received the data via congressional staff). You can get the latest figures (through 12/31/10) by going to that website and typing in the search term "hstcl".
Please contact me directly by email (ed.morawetz@verizon.net) or phone (703-346-7183, or 703-354-6471), and I can give you more information. In the meantime, I'll keep you, your daughter, and your family in my prayers.
Regards, Ed0 -
Hi Linda, i just wanted toLStechert said:Survivor
My son was diagnosed back in 1994. He went through so much that I wrote a book about it which was published, called "Strength and Courage". Sloan Kettering was the only hospital willing to take him back then. He is alive and well today after an incredible journey.
Hi Linda, i just wanted to tell you that i just read your book and it was quite inspirational. At 41 yrs old, my husband was diagnosed with this agressive disease. Nearly 10 months, and 5 different chemo regimens later he is still fighting hard. He is awaiting an unrelated allo transplant to knock this thing out once and for all. Thank you for sharing you & your family's joirney to a cure.0 -
Brother with HSTCLzwhitman said:Hi
I am 27 years old and I was diagnosed with HTCL last month. I was a veterinary student living in Colororado when I started getting fevers and elevated liver enzymes. I took a leave of absence from school and moved back to New York to be with my family. I am currently undergoing round 3 of IVAC chemo at Sloan Kettering. We just found out that my sister and I are a perfect match for transplant so hopefully that will happen in the next few weeks. This site has been very helpful to me to hear everyone elses stories. I have never met anyone with my disease. Thank you all for posting and I will keep you updated with my progress.
A note about the risks of immunosuppressive medications...
I have crohns disease and had been treated with azothioprine (imuran) as well as Humira for the past several years. When you are on this side of things, where you are one of the unlucky few to experience a negative side effect to a drug, it is easy to go back and try to say how dangerous this drug is. I want to STRONGLY urge people to look at the real numbers, and make the risk assessment for themselves. The reality is that crohns disease is a dangerous and deadly disease. There are only a handful of good treatment options for it. Hundreds of thousands of people worldwide are treated for autoimmune diseases with the drugs mentioned above and only a minuscule fraction end up with the crap luck hand that we have been dealt. I did read the labels on my drugs (as I always do, and you should too). I knew that there was a very small chance of getting lymphoma. But there was a very good chance of controlling my crohns so I decided to take the medication anyway. I do not regret my past decisions and I do not blame my GI doctor.
Let me be clear that I do believe that the majority of HTCL cases are caused by an adverse effect to immunosuppressive drugs. I do believe that this is an area that needs further research. I do believe that everyone should report all adverse effects of any drugs to the FDA. And I do believe that all doctors need to do a better job of having HONEST risk assessment conversations about all drugs that they prescribe. But I also believe that if you have crohns you need to do everything you can to control it. (I personally found The Paleo Diet to be a life saver!) The dangers of crohns are real, and your gastroenterologist should be knowledgeable about all of the risks and benefits to the meds he/she prescribes. Remember they want whats best for you too! Sometimes you have to take a risk to get a benefit. The only way out is through.
I am new to board and thankful that it is here. My brother 38 was diagnosed with HSTCL He has chrohns and was treated with remicaid, which worked very well for him. He just received chemo. Are there any resources we can look to as a resource for him? Thank you0 -
worriedzwhitman said:Hi
I am 27 years old and I was diagnosed with HTCL last month. I was a veterinary student living in Colororado when I started getting fevers and elevated liver enzymes. I took a leave of absence from school and moved back to New York to be with my family. I am currently undergoing round 3 of IVAC chemo at Sloan Kettering. We just found out that my sister and I are a perfect match for transplant so hopefully that will happen in the next few weeks. This site has been very helpful to me to hear everyone elses stories. I have never met anyone with my disease. Thank you all for posting and I will keep you updated with my progress.
A note about the risks of immunosuppressive medications...
I have crohns disease and had been treated with azothioprine (imuran) as well as Humira for the past several years. When you are on this side of things, where you are one of the unlucky few to experience a negative side effect to a drug, it is easy to go back and try to say how dangerous this drug is. I want to STRONGLY urge people to look at the real numbers, and make the risk assessment for themselves. The reality is that crohns disease is a dangerous and deadly disease. There are only a handful of good treatment options for it. Hundreds of thousands of people worldwide are treated for autoimmune diseases with the drugs mentioned above and only a minuscule fraction end up with the crap luck hand that we have been dealt. I did read the labels on my drugs (as I always do, and you should too). I knew that there was a very small chance of getting lymphoma. But there was a very good chance of controlling my crohns so I decided to take the medication anyway. I do not regret my past decisions and I do not blame my GI doctor.
Let me be clear that I do believe that the majority of HTCL cases are caused by an adverse effect to immunosuppressive drugs. I do believe that this is an area that needs further research. I do believe that everyone should report all adverse effects of any drugs to the FDA. And I do believe that all doctors need to do a better job of having HONEST risk assessment conversations about all drugs that they prescribe. But I also believe that if you have crohns you need to do everything you can to control it. (I personally found The Paleo Diet to be a life saver!) The dangers of crohns are real, and your gastroenterologist should be knowledgeable about all of the risks and benefits to the meds he/she prescribes. Remember they want whats best for you too! Sometimes you have to take a risk to get a benefit. The only way out is through.
Hello.
My best wishes for you and i hope that you can get well soon.
Since i discovered the t-cell issue a few weeks ago i abandoned my humira. I was taking it for 1 year. So i am with imuran alone.
Please i need to know how many years have you been taking imuran. Humura and both together. Ir if you took remicade before. I can not sleep in the nights because i think that i am going to die soon ir soon i am going to suffer hstcl.
Best regards0 -
Son has ulcerative colitiscatscanmom said:14 YEAR OLD NEWLY DX
I FEEL THE SAME WAY YOU DO.MY DAUGHTER IS CURRENTLY ON TPN BY PIC-LINE AND WE ARE CHOOSING NOT TO USE THE 6MP OR REMICADE THAT HAS BEEN RECOMENDED.SCARED ABOUT THE CANCER RISKS.
WE ARE SET TO GET A SECOND OPINION SOON AND FIND OUT WHAT OUR OPTIONS ARE.SHE IS CURRNTLY ON PREDNISONE AND ONLY LIQUIDS WHICH ARE LIMITED BECAUSE SHE STARTED HAVING PAIN AGAIN AFTER THE STEROIDS WERE REDUCED.SEEKING OUT HOMEOPATHIC WAYS AS WELL.
I AM BEING VERY PUSHY RIGHT NOW WITH OUR DR AND INSISTING THAT HE TRY TO GIVE HER BOWEL REST A LITTLE LONGER TILL THE 2ND OPINION IS DONE,.THE DR FEELS WE ARE WASTING TOO MUCH TIME TO START TREATMENT,BUT I CANT BRING OURSELVES TO PUTTING HER ON THESE STRONG DRUGS.
I FEEL THAT THERE ARE MORE COMPLICATIONS AND DEATHS FROM THE T-CELLLYMPHOMA THAN THE FDA KNOWS ABOUT.AFTERALL,THE 6MP IS NOT EVEN FDA APPROVED FOR USAGE FOR CHROHN,S.ONLY TO TREAT LEUKEMIA.THATS SCARY JUST IN ITSELF
GOODLUCK WITH YOUR DAUGHTER
Hello. My son Nick was diagnosed when he was 18 with ulcerative colitis. After much research and first following doctors orders and taking 6MP - we researched other options. He had an allergic reaction to the drug and was only on it for a few weeks. Seeing Ed Morawetz's brave posts and the horrid loss of his son, Christopher - we really appreciated his research and insight. Our doctor pushed us towards Remicade and others. We went for a second opinion to Mt. Sinai in NYC and Dr. James George.
We pushed and he agreed to think out of the box - we were so afraid to have our son use the strong drugs cited here and his chance to develop T-cell Lymphoma. He was about to turn 19 which it also appeared based upon the posts on this site - was an optimum age that when exposed to these drugs - his incidence would be much higher to develop Lymphoma. Nick was placed on Sulfasalazine - an old fashion drug that is not normally used - very little side effects - Nicky was placed on 1/4 dose for a week and slowly built up a tolerance due to his allergic reaction to 6MP and he has been in remission for almost 1 year with his colitis. He is thriving in college up in Boston and pray and thank God every day that this drug is working and we do not have to make difficult decisions. I pray for all of you whom have posted here - you have saved lives and I wish you some type of peace if you have lost a beloved. My best - Nicky's Mom0 -
Surviving...cydonia said:worried
Hello.
My best wishes for you and i hope that you can get well soon.
Since i discovered the t-cell issue a few weeks ago i abandoned my humira. I was taking it for 1 year. So i am with imuran alone.
Please i need to know how many years have you been taking imuran. Humura and both together. Ir if you took remicade before. I can not sleep in the nights because i think that i am going to die soon ir soon i am going to suffer hstcl.
Best regards
All,
First I want to say how deeply sorry I am for all your losses of loved ones and the hardship we all went through. I'd like to tell you about my story with HSTCL. Back in late so spring of 2010, I began to get sick from normal food intake and it all came to a head while riding a roller coaster at Hershey Park in PA. I never got sick from a ride in my entire life and so after a week of weighing my options; I went to my doc. That week before my doc visit I was accumulating weight that I later found out was the result of Ascities fluid. This resulted in horrible abdomen pain and fluid accumulating in my gut and legs. After the doc consulted with the liver team, they had me come in for a few days. They performed numerous blood panels and a liver biopsy.
As you can imagine, I got the horrible news on 15-JUL-2010. At Thomas Jefferson University Hospital (TJUH) in Philadelphia, PA, they started me on Hyper CVAD chemotherapy (cyclophosphamide, vincristine, doxorubicin [also known as Adriamycin] and dexamethasone. After 6 in-patient rounds of chemo, I was showing favorable results and was preliminarily in remission (with HSTCL there is no clear cut remission) -- or at least showing no signs of lymphoma.
December 2010, I was slated for my Allogenic bone marrow biopsy. Luckily, my older brother was a half match. I spent a month at TJUH for the transplant and had some maintenance issues in the following months resulting in more time at the hospital in seclusion.
Now, January 2012, I am doing great! Last year had many bumps in the road, such as sigmoid colon resectioning and colostomy, brain shunt, c-diff, photofersis, and other issues related to immunosuppresion.
I consider myself extremely lucky and fortunate. My family has stuck by me every step of the way and the personnel at TJUH is world class. Please consider TJUH if you are sick with cancer in the greater Philadelphia area. The doctors and specialists at TJUH gave me a second chance at life. I pray there is more research in this field and pray the best for you and yours. God bless!0 -
t-cell lymphomaCharlieBee said:Any help
Hi all,
My husband was diagnosed with this horrible disease back in march this year. After ESHAP and mini-BEAM chemo, he has not been able to keep it at bay long enough to go ahead with the transplant required. They told us this about 3 weeks ago.
He had a donor ready, which was a grey match apparently and we had high hopes, but the disease is just too aggressive, coming back within 2 weeks all the time.
He has come home now, we have not asked how long he has, we dont want to know, but he is just so poorly!! I am at my wits end trying to keep his temperature down and not be sick. He is taking an oral chemo tablet and steroids, but I am just so scared everyday.
Is there anyone who knows a thing that will help us?
He has this disease because he took Azathiaprine tablets for his crohns disease, he is only 28. It is just so unfair and so sad to see how much pain and suffering he is going through.
I look forward to anyone's response.
Thank you
Charlie
my wife was dianosed with this horrible cancer five years ago and had a auto transplant at m.d.anderson but it came back last year and spread into her liver .So she went back to M.D Anderson but they sent her home to die we contacted a doctor in bardstown kentucky and he put her on a experimental chemo in june and now she is cancer free and going to vanderbilt for a stem cell transplant. if i can give you any information just let me know0 -
My husband was just diagnosed Today-HTCLzwhitman said:Hi
I am 27 years old and I was diagnosed with HTCL last month. I was a veterinary student living in Colororado when I started getting fevers and elevated liver enzymes. I took a leave of absence from school and moved back to New York to be with my family. I am currently undergoing round 3 of IVAC chemo at Sloan Kettering. We just found out that my sister and I are a perfect match for transplant so hopefully that will happen in the next few weeks. This site has been very helpful to me to hear everyone elses stories. I have never met anyone with my disease. Thank you all for posting and I will keep you updated with my progress.
A note about the risks of immunosuppressive medications...
I have crohns disease and had been treated with azothioprine (imuran) as well as Humira for the past several years. When you are on this side of things, where you are one of the unlucky few to experience a negative side effect to a drug, it is easy to go back and try to say how dangerous this drug is. I want to STRONGLY urge people to look at the real numbers, and make the risk assessment for themselves. The reality is that crohns disease is a dangerous and deadly disease. There are only a handful of good treatment options for it. Hundreds of thousands of people worldwide are treated for autoimmune diseases with the drugs mentioned above and only a minuscule fraction end up with the crap luck hand that we have been dealt. I did read the labels on my drugs (as I always do, and you should too). I knew that there was a very small chance of getting lymphoma. But there was a very good chance of controlling my crohns so I decided to take the medication anyway. I do not regret my past decisions and I do not blame my GI doctor.
Let me be clear that I do believe that the majority of HTCL cases are caused by an adverse effect to immunosuppressive drugs. I do believe that this is an area that needs further research. I do believe that everyone should report all adverse effects of any drugs to the FDA. And I do believe that all doctors need to do a better job of having HONEST risk assessment conversations about all drugs that they prescribe. But I also believe that if you have crohns you need to do everything you can to control it. (I personally found The Paleo Diet to be a life saver!) The dangers of crohns are real, and your gastroenterologist should be knowledgeable about all of the risks and benefits to the meds he/she prescribes. Remember they want whats best for you too! Sometimes you have to take a risk to get a benefit. The only way out is through.
He also has Crohn's & has been on Imuran for years. Can you contact me & let me know how you are doing & what, if anything, you have learned about this disease & the best treatment. We have 3 children. Girls, ages 8, 14 & 14 (twins). We live in the St. Louis, MO area. Thank you & I am praying for you...0 -
Husband just diagnosed today-HSTCLMurderHeWrote said:Surviving...
All,
First I want to say how deeply sorry I am for all your losses of loved ones and the hardship we all went through. I'd like to tell you about my story with HSTCL. Back in late so spring of 2010, I began to get sick from normal food intake and it all came to a head while riding a roller coaster at Hershey Park in PA. I never got sick from a ride in my entire life and so after a week of weighing my options; I went to my doc. That week before my doc visit I was accumulating weight that I later found out was the result of Ascities fluid. This resulted in horrible abdomen pain and fluid accumulating in my gut and legs. After the doc consulted with the liver team, they had me come in for a few days. They performed numerous blood panels and a liver biopsy.
As you can imagine, I got the horrible news on 15-JUL-2010. At Thomas Jefferson University Hospital (TJUH) in Philadelphia, PA, they started me on Hyper CVAD chemotherapy (cyclophosphamide, vincristine, doxorubicin [also known as Adriamycin] and dexamethasone. After 6 in-patient rounds of chemo, I was showing favorable results and was preliminarily in remission (with HSTCL there is no clear cut remission) -- or at least showing no signs of lymphoma.
December 2010, I was slated for my Allogenic bone marrow biopsy. Luckily, my older brother was a half match. I spent a month at TJUH for the transplant and had some maintenance issues in the following months resulting in more time at the hospital in seclusion.
Now, January 2012, I am doing great! Last year had many bumps in the road, such as sigmoid colon resectioning and colostomy, brain shunt, c-diff, photofersis, and other issues related to immunosuppresion.
I consider myself extremely lucky and fortunate. My family has stuck by me every step of the way and the personnel at TJUH is world class. Please consider TJUH if you are sick with cancer in the greater Philadelphia area. The doctors and specialists at TJUH gave me a second chance at life. I pray there is more research in this field and pray the best for you and yours. God bless!
Can you please contact me & let me know what steps I should take, questions to ask, ect....How are you doing? I pray you are still well!!! Thanks0 -
Husband just diagnosed today-HSTCLSummerwood Survivor said:Successful Treatment
I believe since HSTCL is so rare, it is prudent to contact a facility that has treated this disease successfully. MD Anderson in Houston, TX is one such facility. They have made advances in treating HSTCL.
I was diagnosed with HSTCL in November 2004, was treated at MD Anderson and had a stem cell transplant in 2005. I am healthy today thanks to God and the treatment I received.
Hi. Could you please contact me & let me know who treated you. Who can I contact? I am also wondering how you are doing. Thank you so much. I am so scared. Please help me. redelstein@centurytel.net0 -
An updateLaureenRitchSTL said:My husband was just diagnosed Today-HTCL
He also has Crohn's & has been on Imuran for years. Can you contact me & let me know how you are doing & what, if anything, you have learned about this disease & the best treatment. We have 3 children. Girls, ages 8, 14 & 14 (twins). We live in the St. Louis, MO area. Thank you & I am praying for you...
Well, its been 7 months since my diagnosis and 120 days since my bone marrow transplant. I am doing extremely well, and my first bone marrow aspirate and imaging scans just came back showing no sign of lymphoma!
Laureen, I am so sorry for what you and your family are going through. It is a huge shock and the information available on the internet is very scarce and very scary. I will post my update publicly so others can learn from it but please feel free to contact me privately if you would like.
I want to share with everyone what my treatment plan has been and the keys that have been so helpful to my recovery so far. I am being treated at Memorial Sloan Kettering Cancer Center in New York. I chose this hospital because they have treated over 10 cases of HTCL in the past few years and they have several patients in multi year remission. Anderson in TX is another cancer center that has treated several cases with some success. Most other cancer centers in the country will have rarely if ever treated this disease before and if you can't go to someplace very good, I would demand that your oncologists contact specialists directly for advice. The best and most current treatment options for this disease have not yet been published!
By definition HTCL is already stage 4. Most people feel that chemo is needed to "knock back" the cancer before a treatment like bone marrow transplant is attempted. Some doctors want to see nearly complete remission before attempting transplant. Others have gotten transplants even if they could not get into full remission with chemo first.
Chemo is going to be the first line of action for most patients. You will want something more aggressive than CHOP or single agent protocols. These protocols have never cured HTCL to my knowledge. Even CHOP R is probably not enough. The two protocols used with some success have been Hyper CVAD (used at Anderson), and IVAC (used at Sloan). I don't believe there is a consensus as to which one is better than the other. I received in total 4 rounds of IVAC before going to transplant. I was NOT in complete remission when we made the decision to go to transplant but I was very close. One last round of IVAC and several doses of Compath (which I think was critical) were given and I had an aspirate the day before transplant. The results didn't come back until after the transplant, but they showed that I did reach a complete remission with the last round of treatment!
While you are doing chemo you should begin the search for a bone marrow donor as this can take some time. There are several options as far as the type of BMT, but I personally think that an ALLO is the only way to go, if the patient is strong enough to tolerate it. If you use your own stem cells there is a higher risk of reintroducing the cancer. I was lucky in that my sister was a 12 out of 12 "perfect" match.
Before the transplant I received 2 days each of cytoxan and thiotepa, and I was given 11 doses of total body radiation over 4 days.
After transplant I was given methyltrexate and KGF to help prevent graft vs host.
The transplant is a very scary and intense experience. Nothing fun about it really! I was lucky to be in and out of the hospital in only 3 1/2 weeks but some people take significantly longer. Since I got out I have been steadily regaining weight, regrowing hair, and getting my stamina and strength back. I did have some minor GVH signs at around the 2 month mark, including an itchy skin rash which was successfully treated with Lidex steroid cream, and some GI upset which has been treated successfully with Budesonide. I currently take Tacrolimus for immune suppression, acyclovir as an antiviral, posiconazole as an antifungal, pantoprazole, budesonide, and magnesium supplementation.
I hope my info can help others. I am by far not out of the woods yet, but I am feeling great and getting back to living a healthy and fulfilling life instead of just surviving. Good luck everyone.0 -
Thank you for answering so quickly!!!zwhitman said:An update
Well, its been 7 months since my diagnosis and 120 days since my bone marrow transplant. I am doing extremely well, and my first bone marrow aspirate and imaging scans just came back showing no sign of lymphoma!
Laureen, I am so sorry for what you and your family are going through. It is a huge shock and the information available on the internet is very scarce and very scary. I will post my update publicly so others can learn from it but please feel free to contact me privately if you would like.
I want to share with everyone what my treatment plan has been and the keys that have been so helpful to my recovery so far. I am being treated at Memorial Sloan Kettering Cancer Center in New York. I chose this hospital because they have treated over 10 cases of HTCL in the past few years and they have several patients in multi year remission. Anderson in TX is another cancer center that has treated several cases with some success. Most other cancer centers in the country will have rarely if ever treated this disease before and if you can't go to someplace very good, I would demand that your oncologists contact specialists directly for advice. The best and most current treatment options for this disease have not yet been published!
By definition HTCL is already stage 4. Most people feel that chemo is needed to "knock back" the cancer before a treatment like bone marrow transplant is attempted. Some doctors want to see nearly complete remission before attempting transplant. Others have gotten transplants even if they could not get into full remission with chemo first.
Chemo is going to be the first line of action for most patients. You will want something more aggressive than CHOP or single agent protocols. These protocols have never cured HTCL to my knowledge. Even CHOP R is probably not enough. The two protocols used with some success have been Hyper CVAD (used at Anderson), and IVAC (used at Sloan). I don't believe there is a consensus as to which one is better than the other. I received in total 4 rounds of IVAC before going to transplant. I was NOT in complete remission when we made the decision to go to transplant but I was very close. One last round of IVAC and several doses of Compath (which I think was critical) were given and I had an aspirate the day before transplant. The results didn't come back until after the transplant, but they showed that I did reach a complete remission with the last round of treatment!
While you are doing chemo you should begin the search for a bone marrow donor as this can take some time. There are several options as far as the type of BMT, but I personally think that an ALLO is the only way to go, if the patient is strong enough to tolerate it. If you use your own stem cells there is a higher risk of reintroducing the cancer. I was lucky in that my sister was a 12 out of 12 "perfect" match.
Before the transplant I received 2 days each of cytoxan and thiotepa, and I was given 11 doses of total body radiation over 4 days.
After transplant I was given methyltrexate and KGF to help prevent graft vs host.
The transplant is a very scary and intense experience. Nothing fun about it really! I was lucky to be in and out of the hospital in only 3 1/2 weeks but some people take significantly longer. Since I got out I have been steadily regaining weight, regrowing hair, and getting my stamina and strength back. I did have some minor GVH signs at around the 2 month mark, including an itchy skin rash which was successfully treated with Lidex steroid cream, and some GI upset which has been treated successfully with Budesonide. I currently take Tacrolimus for immune suppression, acyclovir as an antiviral, posiconazole as an antifungal, pantoprazole, budesonide, and magnesium supplementation.
I hope my info can help others. I am by far not out of the woods yet, but I am feeling great and getting back to living a healthy and fulfilling life instead of just surviving. Good luck everyone.
Please, I cannot find a way on this site to private message you. My email address is: redelstein@centurytel.net
Could u please contact me immediatly?! I would like the name of your Dr. in charge so that I can give it to the specialist (Dr. Nancy Bartlett, Barnes Jewish Hospital/Washington University School of Medicine/Sitemann Cancer Center)when we see her. If she ever calls back. Still waiting...get this, she only see's new patients on Wed. & Thurs.!!!! Or, I will contact your Dr. directly. I do not know where to turn. I will get on a plane to your Dr. if necessary!!! I may need you to give permission to release your treatment records to her. From what I am understanding, time is of the essence!!! Thanks so much!!! I am so happy to hear you are beating this thus far!!! I will pray everyday for you!!!0 -
How can I reach you?mark6016 said:t-cell lymphoma
my wife was dianosed with this horrible cancer five years ago and had a auto transplant at m.d.anderson but it came back last year and spread into her liver .So she went back to M.D Anderson but they sent her home to die we contacted a doctor in bardstown kentucky and he put her on a experimental chemo in june and now she is cancer free and going to vanderbilt for a stem cell transplant. if i can give you any information just let me know
My name is Laureen. My husband, Ritch has just been diagnosed. Desperately seeking treatment info. & Doctors. Email: redelstein@centurytel.net phone: 314-974-6713 St. Louis, mo area0 -
updateLaureenRitchSTL said:Thank you for answering so quickly!!!
Please, I cannot find a way on this site to private message you. My email address is: redelstein@centurytel.net
Could u please contact me immediatly?! I would like the name of your Dr. in charge so that I can give it to the specialist (Dr. Nancy Bartlett, Barnes Jewish Hospital/Washington University School of Medicine/Sitemann Cancer Center)when we see her. If she ever calls back. Still waiting...get this, she only see's new patients on Wed. & Thurs.!!!! Or, I will contact your Dr. directly. I do not know where to turn. I will get on a plane to your Dr. if necessary!!! I may need you to give permission to release your treatment records to her. From what I am understanding, time is of the essence!!! Thanks so much!!! I am so happy to hear you are beating this thus far!!! I will pray everyday for you!!!
i wrote in February 2011 about my close family friend who was diagnosed with HSTCL and i just want to share the news that he is currently in remission.he had chemo and radiation. his brother was a perfect match and he had a successful bone marrow transplant about one year ago. he was lucky enough to celebrate his 55th birthday this May. i don't know the exact details of his treatment. He lives in Los Angeles and is a Kaiser member. All Kaiser transplant cases/cancer sufferers are automatically transferred to City of Hope for their care. His primary doctor was Dr. Cai. So if you have Kaiser and live in this area, or are looking for a referral to a doctor with a successful outcome for HSTCL, you can contact him at City of Hope in Arcadia, CA. All my best to all the people on this discussion list.0 -
t-cell lymphomaLaureenRitchSTL said:How can I reach you?
My name is Laureen. My husband, Ritch has just been diagnosed. Desperately seeking treatment info. & Doctors. Email: redelstein@centurytel.net phone: 314-974-6713 St. Louis, mo area
if you get this and need to talk to my wife gina she went through this twice she would be happy to talk to you she was given up for dead and thru god and a new chemo ginas cancer free you can contact her at angel99g@gmail.com0 -
Hi its GinaLaureenRitchSTL said:How can I reach you?
My name is Laureen. My husband, Ritch has just been diagnosed. Desperately seeking treatment info. & Doctors. Email: redelstein@centurytel.net phone: 314-974-6713 St. Louis, mo area
hi my name is Gina Sprowl my husband contacted you his name is mark i have had lymphoma twice know the first time was in 2006 i had a stemcell transplant an auto where you use your own cells and was cancer free for 3 1/2 years i did the transplant at md anderson clinic but it came back in 2010i went back to md anderson to see what they could do but this time it was in my liver and md anderson could not get my counts to recover so they sent me home on hospice to die but god had another plan for me i went to see my local oncoligist dr. monte msrtin he had a new drug that just came out and we tried it it was a 5 minute chemo 1 time a week for 16 weeks my counts recovered and i was cancer free in 2011 so my doctor recomended me to go to nashville at vanderbilt clinic i did a stemcell transplant we did use my sisters stem cells this time and am now living cancer free
if you have any questions please let me know i will try to answer them for you
where are you from i am in louisville kentucky
Gina Sprowl0 -
hi ncampbell722ncampbell722 said:hepatosplenic t cell lymphoma
Would you please let me know if she had a bone marrow transplant, and if so how she came thru it. My nephew is here in Louisville, KY and I don't think there is anyone here who can accurately treat him for this horrible disease. Would you also please let me know the physician you received treatment from, I would certainly appreciate any help, as time is of the essence.
i am also in ky i had to go to md anderson in texas and vandebilt in nashvillei had to move there for 6 months nasville offers free appartments to transplant people
you should call vanderbilt
my doctor is in bardtown ky.
Gina0
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