Hepatosplenic T-cell Lymphoma

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  • Summerwood Survivor
    Summerwood Survivor Member Posts: 5
    #82
    sleepa007 said:

    My niece
    My condolences go out to you and your family hope. My niece has taken a similar course as the one you described with your daughter. She is 21 years old and had to same symptoms as your daughter (fatigue, nausea and fever). The doctors felt she had nothign more than mono and ran numerous tests that yielded negative results. After 1.5 wks in the hospital in Georgetown, SC they transferred her to a cancer center in Charleston, SC, where she has been since Sunday (10/17/2010). They've had to give her a platele transfusion because her count was so low and they've given her steriods to help her become stronger for the chemo treatment she is going to undergo. It's really scary because I have not read many success stories posted on this thread and my niece appears to be taking the same course your daughter took. It's so difficult seeing a young person that was so full of energy the last time you say them going through so a difficult time. My niece has a 2yr old daughter that makes this even mroe difficult to cope with. If you know of any information or advances made in treating this awful disease, I'd love to have that information before it is too late for my niece. The doctors are telling my family what is wrong, but I do not think they are being honest about the harsh reality and low survival rate that accompany this disease. :-(

    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.
  • erm
    erm Member Posts: 16
    #83
    erm said:

    Another Man Down
    Dear Theresa,

    Although I haven't been on this site for the past month, I wanted you to know that I have been thinking about you, and praying for your recovery from this latest round of cancer. You have obviously received splendid care from your doctors over the past 11 years, and I'm confident that your strength and their skill will pull you through again.

    I remember, after my son Chris died of HSTCL, how I kept asking "why". It's difficult not to ask the same question about having a serious cancer for the third time in 11 years. But, as other posts have said, we can't possibly answer that question with our limited, earthly perspective. We can only fall more deeply into the arms of the One who always cares for us and loves us, through all of our joys and sorrows.

    Thinking of you, and hoping for the best. God bless,

    Ed

    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.
  • sleepa007
    sleepa007 Member Posts: 2
    #84
    Summerwood 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.

    Awesome
    Thanks for you response. My niece is still hanging in there, but the doctors here at the Medical University of South Carolina do not seem to really have an understanding of this disease. She is progressively getting worse. Her organs are failing and her T-Cell count continues to fluctuate. We are looking for second opinions as they have not reached out to any other institutes. Do you remember the name of your doctor or any other doctors that we may be able to contact for some advice or a second opinion? You can contact me at Alfred.ThomasJr@yahoo.com with any information you may have.
  • Wackadoo
    Wackadoo Member Posts: 1
    #85
    My Mom
    My mom was 53 last year when she has a massive scare. Doctors we unable to diagnose her problem. She was completely un-conscience lying on the hospital emergency bed. she was getting worse and worse by the second. I was scared to death. It turned out to be bacterial mennengitis. It was awful. I now understand why they make an emergency button , that they can wear around their neck. If my sister wasn't there to find my mom, she wouldn't be with us today.
  • LStechert
    LStechert Member Posts: 1
    #86
    Summerwood 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.

    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.
  • B1987
    B1987 Member Posts: 2
    #87
    Wackadoo said:

    My Mom
    My mom was 53 last year when she has a massive scare. Doctors we unable to diagnose her problem. She was completely un-conscience lying on the hospital emergency bed. she was getting worse and worse by the second. I was scared to death. It turned out to be bacterial mennengitis. It was awful. I now understand why they make an emergency button , that they can wear around their neck. If my sister wasn't there to find my mom, she wouldn't be with us today.

    My fiancé
    Hi, I'm brazilian. I don't know how to write in english, cause I didn't study enough. But I will try to communicate with you. Well, my fiancé had the diagnostic with Hepatosplenic gammadelta T -cell lymphoma january 2 this year. It was terrifying notice. He's 25. I'm 23. He have been fighting against this disease since february. His spleen was removed january 11. He is currently in treatment with CODOX-M/IVAC, since may. But he started the treatment with HYPER-CVAD, with no favorable resuts, because the disease came back some weeks later. He had a historic with ulcerative rectocolitis since he was 18, he has been treated with Azathioprine 2 years before the diagnosis. It's so hard to see him in the hospital, so younger, with a lot of plans with me... I believe that he will get well, in remission. Sometimes we are in difficult moments, because the side effects, the emotional factor, the fear, the ill healthy... But I care about him, and I do all for him. If I could change the place with him, I will... It's so much suffering. I find good news to the others people that had this disease...

    Beatriz
  • miss maggie
    miss maggie Member Posts: 929
    #88
    B1987 said:

    My fiancé
    Hi, I'm brazilian. I don't know how to write in english, cause I didn't study enough. But I will try to communicate with you. Well, my fiancé had the diagnostic with Hepatosplenic gammadelta T -cell lymphoma january 2 this year. It was terrifying notice. He's 25. I'm 23. He have been fighting against this disease since february. His spleen was removed january 11. He is currently in treatment with CODOX-M/IVAC, since may. But he started the treatment with HYPER-CVAD, with no favorable resuts, because the disease came back some weeks later. He had a historic with ulcerative rectocolitis since he was 18, he has been treated with Azathioprine 2 years before the diagnosis. It's so hard to see him in the hospital, so younger, with a lot of plans with me... I believe that he will get well, in remission. Sometimes we are in difficult moments, because the side effects, the emotional factor, the fear, the ill healthy... But I care about him, and I do all for him. If I could change the place with him, I will... It's so much suffering. I find good news to the others people that had this disease...

    Beatriz

    Beatriz
    Hello Beatriz,

    Your English is quite good. I am so sorry you have to be on our site. Aside
    from that, you are in the right place.

    I am not familiar with your fiancé's DX. I do know someone on this site will
    be more familiar with his DX, and offer you hope and information. I see by
    your post there is good news with others who have the same exact disease. It
    is treatable. It might be a long road, but in the end, it will be all worth it.

    I send my prayers, positive thoughts, to you both. Love Maggie
  • B1987
    B1987 Member Posts: 2
    #89
    miss maggie said:

    Beatriz
    Hello Beatriz,

    Your English is quite good. I am so sorry you have to be on our site. Aside
    from that, you are in the right place.

    I am not familiar with your fiancé's DX. I do know someone on this site will
    be more familiar with his DX, and offer you hope and information. I see by
    your post there is good news with others who have the same exact disease. It
    is treatable. It might be a long road, but in the end, it will be all worth it.

    I send my prayers, positive thoughts, to you both. Love Maggie

    Unfortunately, my fiancé
    Unfortunately, my fiancé didn't resist the treatment... It's so unfair... I hate this disease and I hate chemoterapy... I'm so disappointed with everything... My world fall, my life is over.. I miss him so much, how can I live without him?
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #90
    B1987 said:

    Unfortunately, my fiancé
    Unfortunately, my fiancé didn't resist the treatment... It's so unfair... I hate this disease and I hate chemoterapy... I'm so disappointed with everything... My world fall, my life is over.. I miss him so much, how can I live without him?

    I'm so sorry...
    Hi Beatriz,
    I'm so very, very sorry for your loss. I understand your disappointment and feeling like your life is over. I know it feels like it right now, but in time, it will slowly get less painful. My heart aches for you and the sadness you are feeling. We are here, if you need someone to talk with. Take care...much love to you...Sue (FNHL-2-3A-6/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #91
    allmost60 said:

    I'm so sorry...
    Hi Beatriz,
    I'm so very, very sorry for your loss. I understand your disappointment and feeling like your life is over. I know it feels like it right now, but in time, it will slowly get less painful. My heart aches for you and the sadness you are feeling. We are here, if you need someone to talk with. Take care...much love to you...Sue (FNHL-2-3A-6/10)

    WOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
    Oh my goodness Sue that Rituxan has worked a miracle on you. You look so much younger. . I hope it does the same for me. Ponce DeLeons' "Fountain of Youth" has nothing on you. I just can't believe it. I'm just messing with you,I know its a picture of your little Cutie. She is so sweet. John(FNHL-1-4A-5/10)
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #92
    B1987 said:

    Unfortunately, my fiancé
    Unfortunately, my fiancé didn't resist the treatment... It's so unfair... I hate this disease and I hate chemoterapy... I'm so disappointed with everything... My world fall, my life is over.. I miss him so much, how can I live without him?

    It will get better
    Beatriz,
    I know how it feels like all is falling on you all at once. It sometimes takes a lot of time to find the right combination of treatments. It will get better in time. Just try to keep your head up in the meantime. john
  • worriedandangry
    worriedandangry Member Posts: 1
    #93
    Gretchen Harder said:

    Keep in Touch
    Dear Ann,
    I'm glad you have signed on to this discussion group and hope you will stay connected with us. My condolences on the loss of your husband. My son died 4 weeks ago of HSTCL. When Rob was diagnosed last July we were told that this disease is so rare, there are only 10 to 20 cases in the world per year. There has been so much activity on this discussion group in the last 6 months, and I am counting 6 or 7 deaths in that time just among those of us that found this group, which makes me believe that HSTCL is not as rare as we were told. It may be too soon for either of us to do anything, but I hope you will stay in touch. There are family members here who understand what you have gone through, have been supportive, and want to add to the body of knowledge about this disease. Feel free to email me: gharder@charter.net. Or use the mail function on this site.

    My best wishes to you,

    Gretchen

    10-year-old with Crohn's
    I'm sorry to hear about your son, Rob. So sorry to Ann for the loss of her husband. HSTCL sounds horrible and I can't possibly imagine what you have all had to go through. I agree that it sounds like HSTCL isn't as rare as we think. Thankfully, my daughter does not have this horrible disease. She is 10, she was diagnosed with Crohn's when she was 7. We have been through many painful treatments and as of now, we are at the last combination that is available to children and not in trials. She takes Humira and 6mp, along with the rest of the list of daily meds.

    Is this a deadly combination for someone her age? I feel guilty and horrible every time I inject her and put 6mp in her mouth. Her Ped GI tells me that she is in remission (for Crohn's) and I should be happy and continue the treatment, but I can't help read the warnings, articles and all of these terrible stories that are posted on this site. I'm conflicted and her doctor is CONVINCED this treatment is the best. I am in a constant state of unrest and I would have her blood tested daily if they would let me. Granted I am happy that she is syptom free, but I still worry. I know that she is not in the HIGHEST risk group b/c she is female, but jeez, she is only 10. How would I live with myself if I KNEW of the risk and followed the doctor's instructions to continue? We have an appt coming up and I am going to attempt this conversation AGAIN. Does anyone have any insight? How much do I really know about the risks? How pushy is too pushy with the doctor?
  • KC13167
    KC13167 Member Posts: 215
    #94
    worriedandangry said:

    10-year-old with Crohn's
    I'm sorry to hear about your son, Rob. So sorry to Ann for the loss of her husband. HSTCL sounds horrible and I can't possibly imagine what you have all had to go through. I agree that it sounds like HSTCL isn't as rare as we think. Thankfully, my daughter does not have this horrible disease. She is 10, she was diagnosed with Crohn's when she was 7. We have been through many painful treatments and as of now, we are at the last combination that is available to children and not in trials. She takes Humira and 6mp, along with the rest of the list of daily meds.

    Is this a deadly combination for someone her age? I feel guilty and horrible every time I inject her and put 6mp in her mouth. Her Ped GI tells me that she is in remission (for Crohn's) and I should be happy and continue the treatment, but I can't help read the warnings, articles and all of these terrible stories that are posted on this site. I'm conflicted and her doctor is CONVINCED this treatment is the best. I am in a constant state of unrest and I would have her blood tested daily if they would let me. Granted I am happy that she is syptom free, but I still worry. I know that she is not in the HIGHEST risk group b/c she is female, but jeez, she is only 10. How would I live with myself if I KNEW of the risk and followed the doctor's instructions to continue? We have an appt coming up and I am going to attempt this conversation AGAIN. Does anyone have any insight? How much do I really know about the risks? How pushy is too pushy with the doctor?

    Daughter
    Hi,

    When you are talking about a member of your family and health care; you have a free pass to be as pushy as you think you need to be. After all she's your baby! You are obligated to make the best possible decisions for her, based on all the information that you have. Keep on researching and keep on asking the doctors what ever it is that you need answered. You may need to make an appointment to speak with the doctor without your daughter being there. An appointment for an office discussion should offer you the opportunity to speak openly with this doctor. Share information with the doctor, she won't know how you feel or what your concerns are unless you tell her. You can also ask for a second opinion or even find a doctor that you'll have a better rapport with.

    Good luck with this situation. I pray it gets easier for you and your daughter.

    Kellie
  • CharlieBee
    CharlieBee Member Posts: 2
    #95
    ncampbell722 said:

    hepatosplenic t cell lymphoma
    My nephew who is 20 was diagnosed 3 weeks ago, he is in ICU currently and visitors are not allowed due to his compromised immune system. His Dad, who is my brother asked me to look up the drug Remicade which my nephew was taking for about 3 years followed by Imuran for about one year. One of the adverse side effects of these drugs is Hepatosplenic tcell lymphoma. He was taking these meds due to ulcerated colitis. The MD's were checking his blood on a regular basis and I'm not sure if they were actually looking for signs of infection or if they even knew this was a side effect of this drug. He was admitted to the hospital on a Friday after they called the doctor back and told him he was very ill so they finally admitted him. On the next day (Saturday) he had his spleen removed he was diagnosed on the following Wednesday with t cell lymphoma and was to be transported to Seattle, WA for 2-4 months of treatment followed by a bone marrow transplant. They were to leave that Friday, however on Thursday he began internal bleeding (of the liver) and underwent surgery which prevented his transport to Seattle. On Friday he went back to surgery for observation and was induced to a comatose state which lasted about 6 six days. Following chemo he underwent dialysis since his kydneys could not recylce the residual cancer cells fast enough. He is currently in ICU fighting for his life and the physicians here have never mentioned the fact this disease could be a result of the Remicade and Imuran meds. There is website called CaringBridge.org where you can keep the family in contact regarding condition and to receive messages. Please let me know if you would like to access his website and I will give you specifics. I am desperately searching for any info leading to his recovery.

    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
  • myonlychild
    myonlychild Member Posts: 2
    #96
    worriedandangry said:

    10-year-old with Crohn's
    I'm sorry to hear about your son, Rob. So sorry to Ann for the loss of her husband. HSTCL sounds horrible and I can't possibly imagine what you have all had to go through. I agree that it sounds like HSTCL isn't as rare as we think. Thankfully, my daughter does not have this horrible disease. She is 10, she was diagnosed with Crohn's when she was 7. We have been through many painful treatments and as of now, we are at the last combination that is available to children and not in trials. She takes Humira and 6mp, along with the rest of the list of daily meds.

    Is this a deadly combination for someone her age? I feel guilty and horrible every time I inject her and put 6mp in her mouth. Her Ped GI tells me that she is in remission (for Crohn's) and I should be happy and continue the treatment, but I can't help read the warnings, articles and all of these terrible stories that are posted on this site. I'm conflicted and her doctor is CONVINCED this treatment is the best. I am in a constant state of unrest and I would have her blood tested daily if they would let me. Granted I am happy that she is syptom free, but I still worry. I know that she is not in the HIGHEST risk group b/c she is female, but jeez, she is only 10. How would I live with myself if I KNEW of the risk and followed the doctor's instructions to continue? We have an appt coming up and I am going to attempt this conversation AGAIN. Does anyone have any insight? How much do I really know about the risks? How pushy is too pushy with the doctor?

    I
    a
  • myonlychild
    myonlychild Member Posts: 2
    #97
    erm said:

    if I can help
    Dear Alcorn--My condolences on the loss of your husband. I lost my 20-year old son, Chris, to HSTCL on May 2, 2008; like your husband, he died less than 5 months after his initial (mis)diagnosis with T-cell ALL, and less than 3 months after the correct diagnosis of HSTCL. His disease was caused by taking two immune-suppressant drugs to treat his Crohn's Disease, which is closely related to Ulcerative Colitis. He was receiving both 6-mercaptopurine (which, like Imuran, is a thiopurine drug) and Remicade, a biologic drug, for just over 2 years when his cancer developed. Our American Food and Drug Administration has been very slow to respond to the threat of HSTCL to those receiving immunosuppressants to treat Crohn's or Colitis. I have needed much help to survive this terrible loss, and I would be happy to communicate with you if you wish. My thoughts and prayers are with you and your family. Ed

    Enbrel, Humira for 2 years teen boy HELP/ADVISE PLEASE
    Dear Erm,

    I know your post is from 2009 but I just came across it. There are no words for the loss you have endured. I do not know where you find the strength go on. I am thankfull you posted on this board.


    What symptoms did your son have? If anyone else is reading this and wants to tell me what their symptoms are, please do.

    If you have any advise, I would be forever grateful.

    Thank you. My thoughts and prayers are with you always.
  • CharlieBee
    CharlieBee Member Posts: 2
    #98
    B1987 said:

    Unfortunately, my fiancé
    Unfortunately, my fiancé didn't resist the treatment... It's so unfair... I hate this disease and I hate chemoterapy... I'm so disappointed with everything... My world fall, my life is over.. I miss him so much, how can I live without him?

    The same
    Hi, I would like to offer my heartfelt condolences to you.
    My husband passed away from the same disease in August this year. I am fighting to raise awareness of this horrible disease now, and find that doing so is a great comfort to me.
    I feel exactly the same as you do, my world has been turned upseide down and I feel like my life has been taken away. There are no words that will comfort you, but I hope that knowing that someone is thinking of you and knowing what you are going through will bring a little peace.
    Again, I am so sorry XxX
  • catscanmom
    catscanmom Member Posts: 5
    #99
    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.
  • catscanmom
    catscanmom Member Posts: 5
    #100
    worriedandangry said:

    10-year-old with Crohn's
    I'm sorry to hear about your son, Rob. So sorry to Ann for the loss of her husband. HSTCL sounds horrible and I can't possibly imagine what you have all had to go through. I agree that it sounds like HSTCL isn't as rare as we think. Thankfully, my daughter does not have this horrible disease. She is 10, she was diagnosed with Crohn's when she was 7. We have been through many painful treatments and as of now, we are at the last combination that is available to children and not in trials. She takes Humira and 6mp, along with the rest of the list of daily meds.

    Is this a deadly combination for someone her age? I feel guilty and horrible every time I inject her and put 6mp in her mouth. Her Ped GI tells me that she is in remission (for Crohn's) and I should be happy and continue the treatment, but I can't help read the warnings, articles and all of these terrible stories that are posted on this site. I'm conflicted and her doctor is CONVINCED this treatment is the best. I am in a constant state of unrest and I would have her blood tested daily if they would let me. Granted I am happy that she is syptom free, but I still worry. I know that she is not in the HIGHEST risk group b/c she is female, but jeez, she is only 10. How would I live with myself if I KNEW of the risk and followed the doctor's instructions to continue? We have an appt coming up and I am going to attempt this conversation AGAIN. Does anyone have any insight? How much do I really know about the risks? How pushy is too pushy with the doctor?

    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
  • catscanmom
    catscanmom Member Posts: 5
    #101
    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.

    WORRIED MOM TOO!!
    OH MY GOD! THANKYOU FOR THAT INFORMATION,.WE ARE STILL THINKING ABOUT WHETHER TO PUT OUR DAUGHTER ON THESE MEDS LIKE 6PM ,BUT THIS HAS REALLY BEEN AN EYE OPENER

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