Hepatosplenic T-cell Lymphoma

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  • timsgal
    timsgal Member Posts: 3
    #22
    erm said:

    confusion
    Hello--My son was diagnosed with HSTCL on 2/8/08, after an initial diagnosis of T-cell ALL on 12/6/07. The pathologist who made the correct diagnosis is Dr Elaine Jaffe of the National Institutes of Health. She has seen the pathology slides of all of the American HSTCL cases reported to FDA's MedWatch site, and is listed as the main author of the article on HSTCL when it was first added by the World Health Organization as a separate type of t-cell lymphoma in 2001 or 2002. I urge you to demand that your doctors send your biopsies to Dr. Jaffe for diagnosis, and I hope and pray that you will regain your health. Ed

    Dr. Jaffe email
    I emailed Dr. Jaffe not sure she will respond but hopefully she will. I thank you for the suggestion of her as I am at my wits end. I would be intrested to know what your sons symptoms were and if he had enlarged liver or spleen, high liver enzymes etc. What has his treatment been since correct diagnosis. How in the world did you discover Dr. Jaffe and have the confidence to send your biopsy slides? Is she located in Maryland I see that is the address on website. Timsgal
  • Gretchen Harder
    Gretchen Harder Member Posts: 13
    #23
    ncampbell722 said:

    hepatosplenic t cell lymphoma
    Hey Jer8226
    I hope everything is going well with your brother, I have a nephew who was diagnosed 3 weeks ago with this same lymphoma and I have been on the search as well. The more I read about it the more I understand and the deeper I dig. I have a question for you if you would please let me know if your brother was ever taking such drugs as Remicade or Imuran. As both of these drugs list on the label that Hepatosplenic t cell lymphoma is an adverse side effect. These drugs are used to treat rheumatoid arthritis, Crones disease and ulcerative colitis. I look forward to hearing from you.

    Seattle Cancer Care Alliance, did we meet?
    Our 24 year old son has HSTCL and is living in Seattle with his mother to receive treatment at SCCA.

    We met a family from Kentucky in September (or early October) whose son named Eddie was dealing with the same issue and being treated by the same doctor.

    We would like to re-connect with the family especially if they are still in Seattle.

    My cell phone is 509-551-8675

    Also, my husband (John) and I are interested in what you have posted on the Cancer Survivor Network website on which we've registered today. We also believe that the medical risk posed by the popular drugs is being underplayed by the system, and we don't want this risk to continue harming others due to this 'silence'.

    sincerely,

    Gretchen Harder
  • erm
    erm Member Posts: 16
    #24
    timsgal said:

    Dr. Jaffe email
    I emailed Dr. Jaffe not sure she will respond but hopefully she will. I thank you for the suggestion of her as I am at my wits end. I would be intrested to know what your sons symptoms were and if he had enlarged liver or spleen, high liver enzymes etc. What has his treatment been since correct diagnosis. How in the world did you discover Dr. Jaffe and have the confidence to send your biopsy slides? Is she located in Maryland I see that is the address on website. Timsgal

    Dr Jaffe
    Hi--my son Chris's oncologist knew of Dr Jaffe's HSTCL expertise and sent his bone marrow biopsies to her. She is located in Maryland, and works for the National Institutes of Health (NIH). Later, I learned that my regular MD knew Dr Jaffe, and I got in touch with her directly through him. My guess is that she might be more likely to respond if your oncologist requested that she look at your bone marrow biopsies.

    My son's symptoms involved fatigue, a very enlarged spleen, and extreme upper left quadrant pain due to the spleen enlargement. I don't recall high liver enzymes, but I'm not sure about that. He was tested for mono and CMV several times before the docs decided he should have a liver biopsy. The day after the biopsy, his white blood cell count skyrocketed (going from 11,000 to 80,000 in a few hours) as the cancer apparently exploded through his blood system. It was at that point that he was (mis)diagnosed with t-cell ALL.

    Chris's treatment after the correct diagnosis was high-dose chemotherapy, in preparation for a bone marrow transplant. During both rounds of high-dose chemo, Chris contracted lung infections, the second of which led to his death, on May 2, 2008. In total, he lived less than 5 months after the initial (mis)diagnosis of t-cell ALL.

    Please let me know if there is any more information that would be helpful, or if there is anything I can do to help. erm (PS--did you email her at the NIH address?)
  • erm
    erm Member Posts: 16
    #25
    Gretchen Harder said:

    Seattle Cancer Care Alliance, did we meet?
    Our 24 year old son has HSTCL and is living in Seattle with his mother to receive treatment at SCCA.

    We met a family from Kentucky in September (or early October) whose son named Eddie was dealing with the same issue and being treated by the same doctor.

    We would like to re-connect with the family especially if they are still in Seattle.

    My cell phone is 509-551-8675

    Also, my husband (John) and I are interested in what you have posted on the Cancer Survivor Network website on which we've registered today. We also believe that the medical risk posed by the popular drugs is being underplayed by the system, and we don't want this risk to continue harming others due to this 'silence'.

    sincerely,

    Gretchen Harder

    IBD treatments (Remicade and 6-MP) and HSTCL
    Dear Gretchen and John,

    My son Chris died of HSTCL in May of 2008, after receiving Remicade and 6-MP to treat his Crohn's Disease for roughly 2 years. Was your son also being treated for Crohn's Disease or Ulcerative Colitis before he developed HSTCL?

    I fully agree that the risks of these "miracle drugs" (biologics used in combination with thiopurine immune-suppressants) is much greater than supposed. The problem is getting FDA, the medical community, or the media to pay attention to the issue. I have sent FDA and the media a number of letters to no avail.

    I am hoping to connect with others whose family members have been diagnosed with HSTCL, and to continue trying to break the silence and misunderstanding that surrounds the connection between these drugs and HSTCL. To that end, I have two requests: please report (or ask your son's oncologist to report) his illness to FDA through the "MedWatch" system; and please contact me if you are interested in finding ways to expose the risks posed by biologic and thiopurine immune-suppressants.

    Thanks,

    Ed Morawetz (erm) ed.morawetz@verizon.net, or by cell at 703-346-7183.
  • mariegary
    mariegary Member Posts: 1
    #26
    erm said:

    Dr Jaffe
    Hi--my son Chris's oncologist knew of Dr Jaffe's HSTCL expertise and sent his bone marrow biopsies to her. She is located in Maryland, and works for the National Institutes of Health (NIH). Later, I learned that my regular MD knew Dr Jaffe, and I got in touch with her directly through him. My guess is that she might be more likely to respond if your oncologist requested that she look at your bone marrow biopsies.

    My son's symptoms involved fatigue, a very enlarged spleen, and extreme upper left quadrant pain due to the spleen enlargement. I don't recall high liver enzymes, but I'm not sure about that. He was tested for mono and CMV several times before the docs decided he should have a liver biopsy. The day after the biopsy, his white blood cell count skyrocketed (going from 11,000 to 80,000 in a few hours) as the cancer apparently exploded through his blood system. It was at that point that he was (mis)diagnosed with t-cell ALL.

    Chris's treatment after the correct diagnosis was high-dose chemotherapy, in preparation for a bone marrow transplant. During both rounds of high-dose chemo, Chris contracted lung infections, the second of which led to his death, on May 2, 2008. In total, he lived less than 5 months after the initial (mis)diagnosis of t-cell ALL.

    Please let me know if there is any more information that would be helpful, or if there is anything I can do to help. erm (PS--did you email her at the NIH address?)

    Hepatosplenic Gamma Delta T-Cell Lymphoma
    Hi,

    First of all, I'm saddened to read of the loss of your son. My son was diagnosed with Hepatosplenic Gamma Delta T-Cell Lymphoma in April 2009 ~ the same month he turned 18 years old. We traveled to M.D. Anderson Cancer Center in Houston, TX where his diagnosis was confirmed. We then returned to our home in NY where my son was treated with CHOP therapy as per M.D. Anderson's protocol. He was in remission by late May 2009. Once his four chemotherapy sessions (which each consisted of 4 days of inpatient chemo) was complete, we returned to M.D. Anderson Cancer Center where my son underwent high dose chemotherapy and then a stem cell transplant. As of today (1-11-10), he remains in remission and we are so very grateful. But we are also still so scared. There is little to read about this disease and what is out there is horrible and depressing.

    I'm open to chatting with anyone who is interested as I think this site could be a great support to me as well as my family.
  • Gretchen Harder
    Gretchen Harder Member Posts: 13
    #27
    erm said:

    IBD treatments (Remicade and 6-MP) and HSTCL
    Dear Gretchen and John,

    My son Chris died of HSTCL in May of 2008, after receiving Remicade and 6-MP to treat his Crohn's Disease for roughly 2 years. Was your son also being treated for Crohn's Disease or Ulcerative Colitis before he developed HSTCL?

    I fully agree that the risks of these "miracle drugs" (biologics used in combination with thiopurine immune-suppressants) is much greater than supposed. The problem is getting FDA, the medical community, or the media to pay attention to the issue. I have sent FDA and the media a number of letters to no avail.

    I am hoping to connect with others whose family members have been diagnosed with HSTCL, and to continue trying to break the silence and misunderstanding that surrounds the connection between these drugs and HSTCL. To that end, I have two requests: please report (or ask your son's oncologist to report) his illness to FDA through the "MedWatch" system; and please contact me if you are interested in finding ways to expose the risks posed by biologic and thiopurine immune-suppressants.

    Thanks,

    Ed Morawetz (erm) ed.morawetz@verizon.net, or by cell at 703-346-7183.

    IBD Treatments and HSTCL
    Hi, Ed,

    Yes, our son was diagnosed with Ulcerative Colitis in late 2002, age 17. He is now 24. He has been treated with Asocol and Azathioprine since diagnosis. We were looking into seeing if we could get him off of the azathioprine, because of concern for the dangers the drug posed. Rob's UC was pretty stable, no major flares for awhile. His blood counts were being monitored by his GI. In January 2009 the dr. noticed something amiss, had him get more blood work done, ultimately took him off of all meds and then referred us to a hematologist when the blood counts kept going down. Initial bone marrow biopsy ruled out cancer, and it was several months before we were sent to Seattle, when Rob became critical and they didn't know what was going on.

    Rob has undergone a number of chemotherapy regimines since being diagnosed with HSTCL in late July. None have gotten him into remission long enough to proceed to stem cell transplant. We are running out of options.

    John and I would also like to connect with others whose family members have been diagnosed with HSTCL. We will definitely report to the FDA. We are a little stressed right now with Rob's treatment, so may not be readily available, but will plan on being in touch.

    Gretchen Harder
    gharder@charter.net
    509-551-8675 (cell)
  • Gretchen Harder
    Gretchen Harder Member Posts: 13
    #28
    mariegary said:

    Hepatosplenic Gamma Delta T-Cell Lymphoma
    Hi,

    First of all, I'm saddened to read of the loss of your son. My son was diagnosed with Hepatosplenic Gamma Delta T-Cell Lymphoma in April 2009 ~ the same month he turned 18 years old. We traveled to M.D. Anderson Cancer Center in Houston, TX where his diagnosis was confirmed. We then returned to our home in NY where my son was treated with CHOP therapy as per M.D. Anderson's protocol. He was in remission by late May 2009. Once his four chemotherapy sessions (which each consisted of 4 days of inpatient chemo) was complete, we returned to M.D. Anderson Cancer Center where my son underwent high dose chemotherapy and then a stem cell transplant. As of today (1-11-10), he remains in remission and we are so very grateful. But we are also still so scared. There is little to read about this disease and what is out there is horrible and depressing.

    I'm open to chatting with anyone who is interested as I think this site could be a great support to me as well as my family.

    Teleconference January 14
    Just wanted to alert everyone to a teleconference on Peripheral T-Cell Lymphoma. It takes place tomorrow, January 14th starting at 1:30 Eastern time. Go to: www.cancercare.org. It is listed on the right side of the page. Register and they will send you the phone # to link in. I understand they also podcast these conferences, so you can catch them later.
  • erm
    erm Member Posts: 16
    #29
    mariegary said:

    Hepatosplenic Gamma Delta T-Cell Lymphoma
    Hi,

    First of all, I'm saddened to read of the loss of your son. My son was diagnosed with Hepatosplenic Gamma Delta T-Cell Lymphoma in April 2009 ~ the same month he turned 18 years old. We traveled to M.D. Anderson Cancer Center in Houston, TX where his diagnosis was confirmed. We then returned to our home in NY where my son was treated with CHOP therapy as per M.D. Anderson's protocol. He was in remission by late May 2009. Once his four chemotherapy sessions (which each consisted of 4 days of inpatient chemo) was complete, we returned to M.D. Anderson Cancer Center where my son underwent high dose chemotherapy and then a stem cell transplant. As of today (1-11-10), he remains in remission and we are so very grateful. But we are also still so scared. There is little to read about this disease and what is out there is horrible and depressing.

    I'm open to chatting with anyone who is interested as I think this site could be a great support to me as well as my family.

    Hepatosplenic Gamma Delta T-cell Lymphoma
    Dear Mariegary,

    Thanks for your message. I am so glad to hear that your son is in remission; that is a tremendous blessing! I know how frightening this disease is, and how difficult it is to find people to talk to who have been through this with a child or close relative. I have been in touch with several of the folks who have posted on this site, and find it to be a great comfort. I would be happy to chat anytime. If you would like to talk, my cell phone is (703) 346-7183, and my email is ed.morawetz@verizon.net.

    If I may ask, was your son taking immune-suppressant drugs to treat either Crohn's Disease or Ulcerative Colitis?

    Ed
  • GodhealedCTR
    GodhealedCTR Member Posts: 12
    #30
    Hepatosplenic T-cell Lymphoma - >10 yrs in remission
    In 1999 at 39 yrs of age, I was diagnosed with Stage 4 HTCL - all in a matter of 2 weeks. The oncologist told my husband to prepare for the worse as I had 48 hrs to live. However, my oncologist did not give up and gave me a mild chemo as all my organs had shut down except for my kidneys at the time. After 3 days, I was out of ICU. 2 DHAC chemo within a space of weeks was administered but the fever kept coming back - an indication that the disease was back. My oncologist transfered me to a haematologist for autologous stem cell transplantation (ASCT). I was given GCSF (steriod)injections twice a day to stimulate the stem cells. It was a miracle that I had enough stem cells for 2 ASCT, with one batch of healthy cells selected. After the first ASCT, I went into a neurotoxic coma for 10 days. It was very hard on the doctors and my husband as they weren't sure whether it was the treatment or the cancer causing the coma. 5 weeks after the ASCT, I felt ready for the 2nd ASCT. My hematologist was concerned that my blood results were still flat lining and the closest back-to-back transplantation he had ever done during that time was 12 weeks apart. I felt that with the aggresive nature of the cancer, it was a risk to wait. In any case, I was mentally ready for the next ASCT. He agreed to do the 2nd on the 7th week, he changed the chemo regime and slowed down the treatment process to reduce the risk of me going into a coma again. My family and I were on an emotional roller coaster druing my battle with the cancer. The medical regime I underwent was critical to my survival. However, the strength I drew from my family's love (especially of my husband) and friends' support was instrumental to keeping my spirits up. The greatest joy I experienced during the very dark and painful period of 6 months of intense treatment was Jesus answering the prayers of mine, family and friends. At the same time, I sought supplementary naturatherapy and changed my diet to mainly alkaline foods, cutting out sugar and minimising foods that would make my body/liver work harder. Also I went for meditation classes in a bid to help cope with stress. Now after 10 years of remission, I am undergoing treatment (venesection over the last 2 years), for high Ferritin levels caused by having more than 40 units of blood transfusions in 1999/2000. This is the first time I'm sharing my miracle healing with the wider world but I felt compelled to do so, to give some hope to those experiencing this aggressive disease. I told my hematologist that he should publish the success of my treatment but he said that "one swallow doesn't make a summer". I read that some of you were waiting for your loved ones to go into remission before doing the transplantation. With such an aggressive cancer, I believe that the very draconian and intense chemo followed by back-to-back ASCT, all within a 6-month period, was instrumental in getting me to remission. However, all credit must be given to God who guided the medical team around me, carrying me through the excruciating pain and suffering, as well as blessing me with a first class husband, wonderful family and friends.
  • Gretchen Harder
    Gretchen Harder Member Posts: 13
    #31
    GodhealedCTR said:

    Hepatosplenic T-cell Lymphoma - >10 yrs in remission
    In 1999 at 39 yrs of age, I was diagnosed with Stage 4 HTCL - all in a matter of 2 weeks. The oncologist told my husband to prepare for the worse as I had 48 hrs to live. However, my oncologist did not give up and gave me a mild chemo as all my organs had shut down except for my kidneys at the time. After 3 days, I was out of ICU. 2 DHAC chemo within a space of weeks was administered but the fever kept coming back - an indication that the disease was back. My oncologist transfered me to a haematologist for autologous stem cell transplantation (ASCT). I was given GCSF (steriod)injections twice a day to stimulate the stem cells. It was a miracle that I had enough stem cells for 2 ASCT, with one batch of healthy cells selected. After the first ASCT, I went into a neurotoxic coma for 10 days. It was very hard on the doctors and my husband as they weren't sure whether it was the treatment or the cancer causing the coma. 5 weeks after the ASCT, I felt ready for the 2nd ASCT. My hematologist was concerned that my blood results were still flat lining and the closest back-to-back transplantation he had ever done during that time was 12 weeks apart. I felt that with the aggresive nature of the cancer, it was a risk to wait. In any case, I was mentally ready for the next ASCT. He agreed to do the 2nd on the 7th week, he changed the chemo regime and slowed down the treatment process to reduce the risk of me going into a coma again. My family and I were on an emotional roller coaster druing my battle with the cancer. The medical regime I underwent was critical to my survival. However, the strength I drew from my family's love (especially of my husband) and friends' support was instrumental to keeping my spirits up. The greatest joy I experienced during the very dark and painful period of 6 months of intense treatment was Jesus answering the prayers of mine, family and friends. At the same time, I sought supplementary naturatherapy and changed my diet to mainly alkaline foods, cutting out sugar and minimising foods that would make my body/liver work harder. Also I went for meditation classes in a bid to help cope with stress. Now after 10 years of remission, I am undergoing treatment (venesection over the last 2 years), for high Ferritin levels caused by having more than 40 units of blood transfusions in 1999/2000. This is the first time I'm sharing my miracle healing with the wider world but I felt compelled to do so, to give some hope to those experiencing this aggressive disease. I told my hematologist that he should publish the success of my treatment but he said that "one swallow doesn't make a summer". I read that some of you were waiting for your loved ones to go into remission before doing the transplantation. With such an aggressive cancer, I believe that the very draconian and intense chemo followed by back-to-back ASCT, all within a 6-month period, was instrumental in getting me to remission. However, all credit must be given to God who guided the medical team around me, carrying me through the excruciating pain and suffering, as well as blessing me with a first class husband, wonderful family and friends.

    HSTCL - 10 years in remission
    Dear GodhealedCTR,

    Thank you for sharing your experience. I am in awe that you made it through considering what bad shape you were in, and that gives me hope. My son was diagnosed with HSTCL in late July last year (2009) and has been undergoing treatment at Fred Hutchinson in Seattle since that time. They were going to try to do an auto transplant in November, followed by an allo transplant in January. However, after harvesting his stem cells, they discovered too much lymphoma in his periperal blood, such that they didn't want to risk transplanting lymphoma back to him. At the same time his liver function tests indicated increasing lymphoma activity in the liver. They have tried a number of other chemo regimens since November. Each one seems to have some success knocking the lymphoma down, but then it comes right back. We are about out of conventional options. My understanding is that they don't think an allo transplant will be successful, either, with too much lymphoma still in the liver.

    Can you share where you received treatment? I would hope your doctor did at least share the results of your treatment with the hematology world, so that it is in the "case file." One swallow may not make a summer, but this disease has such grim statistics that any success should be noted. For instance, emr mentioned Dr. Elaine Jaffe in a post above, who has been keeping tabs on HSTCL cases. Also, were you on immunosuppressent drugs prior to your HSTCL diagnosis? Most of the cases posted here were on Remicade or Imuran to treat Ulcerative Colitis or Crohns disease.

    Thank you again for sharing your experience. The statistics are so grim, that it is good to hear a success story.

    Gretchen
  • GodhealedCTR
    GodhealedCTR Member Posts: 12
    #32
    Gretchen Harder said:

    HSTCL - 10 years in remission
    Dear GodhealedCTR,

    Thank you for sharing your experience. I am in awe that you made it through considering what bad shape you were in, and that gives me hope. My son was diagnosed with HSTCL in late July last year (2009) and has been undergoing treatment at Fred Hutchinson in Seattle since that time. They were going to try to do an auto transplant in November, followed by an allo transplant in January. However, after harvesting his stem cells, they discovered too much lymphoma in his periperal blood, such that they didn't want to risk transplanting lymphoma back to him. At the same time his liver function tests indicated increasing lymphoma activity in the liver. They have tried a number of other chemo regimens since November. Each one seems to have some success knocking the lymphoma down, but then it comes right back. We are about out of conventional options. My understanding is that they don't think an allo transplant will be successful, either, with too much lymphoma still in the liver.

    Can you share where you received treatment? I would hope your doctor did at least share the results of your treatment with the hematology world, so that it is in the "case file." One swallow may not make a summer, but this disease has such grim statistics that any success should be noted. For instance, emr mentioned Dr. Elaine Jaffe in a post above, who has been keeping tabs on HSTCL cases. Also, were you on immunosuppressent drugs prior to your HSTCL diagnosis? Most of the cases posted here were on Remicade or Imuran to treat Ulcerative Colitis or Crohns disease.

    Thank you again for sharing your experience. The statistics are so grim, that it is good to hear a success story.

    Gretchen

    HSTCL - >10 years in remission
    Hello Gretchen

    I've been searching through the archives and unfortunately could not find my treatment regime. If you wish, your specialist could contact my hematologist: Dr Richard Herrmann
    http://www.clinipathpathology.com.au/about-us/pathologists/pr-list/dr-richard-herrmann.aspx
    Please give me your doctor's information and I will email Richard authorising him to release my treatment information.

    My last two chemos followed by auto transplants were carried out as an inpatient at the Royal Perth Hospital in Western Australia. It is my belief that the draconian regime of 5 chemos followed by 2 back-to-back auto transplant 7 weeks apart within a space of 6 months was crucial to hitting the cancer on the head. The doctors did not wait for my blood results to improve before embarking on the next chemo. I'm not sure what your son's liver counts are but I thought perhaps I could give you mine for comparison. Just before I started the auto transplant my LFT was Bilirubin 19, Alk Phs 417, ALT 499 and Albumen 31.

    Prior to my diagnose, I was in a very stressful job and travelling regularly. I was not on any immuno-suppressant drugs. Aside from feeling really tired for some time, when the symptoms started presenting itself, it went quickly to Stage 4 within a space of 2 weeks.

    It's also important to have a wholistic approach towards healing - spiritual, diet, positive outlook, relaxation and avoiding infections. My prayers are with you.
  • hope-712
    hope-712 Member Posts: 4
    #33
    GodhealedCTR said:

    HSTCL - >10 years in remission
    Hello Gretchen

    I've been searching through the archives and unfortunately could not find my treatment regime. If you wish, your specialist could contact my hematologist: Dr Richard Herrmann
    http://www.clinipathpathology.com.au/about-us/pathologists/pr-list/dr-richard-herrmann.aspx
    Please give me your doctor's information and I will email Richard authorising him to release my treatment information.

    My last two chemos followed by auto transplants were carried out as an inpatient at the Royal Perth Hospital in Western Australia. It is my belief that the draconian regime of 5 chemos followed by 2 back-to-back auto transplant 7 weeks apart within a space of 6 months was crucial to hitting the cancer on the head. The doctors did not wait for my blood results to improve before embarking on the next chemo. I'm not sure what your son's liver counts are but I thought perhaps I could give you mine for comparison. Just before I started the auto transplant my LFT was Bilirubin 19, Alk Phs 417, ALT 499 and Albumen 31.

    Prior to my diagnose, I was in a very stressful job and travelling regularly. I was not on any immuno-suppressant drugs. Aside from feeling really tired for some time, when the symptoms started presenting itself, it went quickly to Stage 4 within a space of 2 weeks.

    It's also important to have a wholistic approach towards healing - spiritual, diet, positive outlook, relaxation and avoiding infections. My prayers are with you.

    Hello Godhealed,
    My 17 year
    Hello Godhealed,

    My 17 year old daughter was diagnosed with HTCL in October. She was perfectly healthy before. Since then she has received 6 rounds of chemo and is about to undergo her 7th round. She was supposed to go to transplant in Nov/Dec 09, but her body kept resisting chemotherapy. She has been hospitalized since Nov 09. Her last two rounds of chemo have been "salvage" chemo. Her bone marrow will show minimal cancer, but her liver is still full of lymphoma. I was wondering what your status was when you went to transplant. She is supposed to receive cord blood, but the transplant facility will not take her until she is in complete remission. Please help me. She is already in stage 4 and we are running out of time.I wanted to know where you had your transplant, also. Thanks in advance.
  • GodhealedCTR
    GodhealedCTR Member Posts: 12
    #34
    hope-712 said:

    Hello Godhealed,
    My 17 year
    Hello Godhealed,

    My 17 year old daughter was diagnosed with HTCL in October. She was perfectly healthy before. Since then she has received 6 rounds of chemo and is about to undergo her 7th round. She was supposed to go to transplant in Nov/Dec 09, but her body kept resisting chemotherapy. She has been hospitalized since Nov 09. Her last two rounds of chemo have been "salvage" chemo. Her bone marrow will show minimal cancer, but her liver is still full of lymphoma. I was wondering what your status was when you went to transplant. She is supposed to receive cord blood, but the transplant facility will not take her until she is in complete remission. Please help me. She is already in stage 4 and we are running out of time.I wanted to know where you had your transplant, also. Thanks in advance.

    Your 17 year old
    I'm so sorry to hear about your daughter's diagnosis at such a young age. I had both autologuous stem cell transplantations ("ASCT") done in the Bone Marrow Transplant Unit at the Royal Perth Hospital in Western Australia. After 3 courses of chemos, the cancer kept coming back in the form of a fever. The hematologist went ahead with the ASCT even though all my blood results were dismal and the lymphoma was still in my liver. I am really puzzled reading the conversation thread on this website about the doctors waiting for the patient to go into remission before embarking on transplantation. With the aggressive nature of HTCL, if my specialists had waited, I might not be here today. I firmly believe that the unrelentless chemo followed by back-to-back ASCT 7 weeks apart was the treatment that beat the cancer. I would be pleased to help you with any information you may require. Please give me your email address, if you desire, and we can discuss privately.
    God bless.
  • hope-712
    hope-712 Member Posts: 4
    #35
    GodhealedCTR said:

    Your 17 year old
    I'm so sorry to hear about your daughter's diagnosis at such a young age. I had both autologuous stem cell transplantations ("ASCT") done in the Bone Marrow Transplant Unit at the Royal Perth Hospital in Western Australia. After 3 courses of chemos, the cancer kept coming back in the form of a fever. The hematologist went ahead with the ASCT even though all my blood results were dismal and the lymphoma was still in my liver. I am really puzzled reading the conversation thread on this website about the doctors waiting for the patient to go into remission before embarking on transplantation. With the aggressive nature of HTCL, if my specialists had waited, I might not be here today. I firmly believe that the unrelentless chemo followed by back-to-back ASCT 7 weeks apart was the treatment that beat the cancer. I would be pleased to help you with any information you may require. Please give me your email address, if you desire, and we can discuss privately.
    God bless.

    My 17 year old
    Thank you sooo much for getting back to me. My e-mail address is tra_ashart@yahoo.com. I am very interested in hearing how the arrangements were made so that you could go to Australia. I am looking forward to hearing from you. Thank you in advance.
  • erm
    erm Member Posts: 16
    #36
    GodhealedCTR said:

    Your 17 year old
    I'm so sorry to hear about your daughter's diagnosis at such a young age. I had both autologuous stem cell transplantations ("ASCT") done in the Bone Marrow Transplant Unit at the Royal Perth Hospital in Western Australia. After 3 courses of chemos, the cancer kept coming back in the form of a fever. The hematologist went ahead with the ASCT even though all my blood results were dismal and the lymphoma was still in my liver. I am really puzzled reading the conversation thread on this website about the doctors waiting for the patient to go into remission before embarking on transplantation. With the aggressive nature of HTCL, if my specialists had waited, I might not be here today. I firmly believe that the unrelentless chemo followed by back-to-back ASCT 7 weeks apart was the treatment that beat the cancer. I would be pleased to help you with any information you may require. Please give me your email address, if you desire, and we can discuss privately.
    God bless.

    Your treatment
    Hello: I have been reading your posts to this site with great interest. My son died of HSTCL on 5/2/08, the result of receiving a particular combination of medications to treat his Crohn's Disease, less than five months after diagnosis. Like "Hope's" daughter, his doctors did not consider a bone marrow transplant feasible until he was in remission and, of course, he never went into remission.

    Clearly, your doctors took a much different approach, and that approach (doing the transplant without waiting for full remission) saved your life. I would like to ask you several questions: (1) did your doctors ever publish the results of your treatment in a peer-reviewed journal? If so, can you provide me with the reference for the published article?; (2) If they did not publish, would they consider doing so? Doctors (and transplant centers) in the US probably will pay no attention to alternatives to their current (and ineffective) HSTCL protocol of waiting for remission, then doing the transplant, unless there has been something published that they can read; and (3) Was your HSTCL related in any way to drug therapy that you received to treat either Crohn's Disease or Ulcerative Colitis?

    Thank you for posting your very important information to this web site. I look forward to hearing from you.

    God bless,

    Ed Morawetz
  • GodhealedCTR
    GodhealedCTR Member Posts: 12
    #37
    erm said:

    Your treatment
    Hello: I have been reading your posts to this site with great interest. My son died of HSTCL on 5/2/08, the result of receiving a particular combination of medications to treat his Crohn's Disease, less than five months after diagnosis. Like "Hope's" daughter, his doctors did not consider a bone marrow transplant feasible until he was in remission and, of course, he never went into remission.

    Clearly, your doctors took a much different approach, and that approach (doing the transplant without waiting for full remission) saved your life. I would like to ask you several questions: (1) did your doctors ever publish the results of your treatment in a peer-reviewed journal? If so, can you provide me with the reference for the published article?; (2) If they did not publish, would they consider doing so? Doctors (and transplant centers) in the US probably will pay no attention to alternatives to their current (and ineffective) HSTCL protocol of waiting for remission, then doing the transplant, unless there has been something published that they can read; and (3) Was your HSTCL related in any way to drug therapy that you received to treat either Crohn's Disease or Ulcerative Colitis?

    Thank you for posting your very important information to this web site. I look forward to hearing from you.

    God bless,

    Ed Morawetz

    HSTCL treatment
    Hello Ed

    As a mother, you have my deepest sympathy on the loss of your beloved son. In response to your questions (1) No, my hematologist said that "one swallow doesn't make a summer" so it was not enough for him to publish my miracle cure. (2) I will be seeing him again in a few weeks time and will ask him if he would consider publishing. In 1999 when I was diagnosed, there was only a few handful of HSTCL articles on the net and the prognosis was extremely bleak with no survivors. (3) As advised to Gretchen in earlier chat, my condition was not related to any drug therapy. When it presented itself in Jul 1999, within a short space of 2 weeks it reached Stage 4. All my organs, except for kidneys, shut down and the doctors gave me 48 hrs to live.

    As indicated in my earlier postings, I had a few cycles of venesections because my ferritin levels are too high as a result of excessive blood transfusions in 1999/2000. My ferritin levels are still high at ~700 (norm count ~370) but that is much better than when I started a couple of years ago at >3,500.

    I do wonder what happened with the person who started this chat Forum, Valkyri31mh. I hope that sharing my miracle cure will in some small way help someone out there. Is there no way for the patient, in the US, persuade the doctors to carry out the stem cell transplantation without having to go into remission? On both occasions of my transplant, I was not in remission at all. The doctors were able to harvest enough stem cells from me for two transplants and even selected only good cells from one batch.

    When I see Dr Richard Herrmann again in a few weeks, I will try to get more information of my autologuous transplant regime from him to post onto this forum.

    Meanwhile, stay positive and may the good Lord bless all of you.

    CTR in Perth, Western Australia
  • Hessner
    Hessner Member Posts: 2
    #38
    erm said:

    Your treatment
    Hello: I have been reading your posts to this site with great interest. My son died of HSTCL on 5/2/08, the result of receiving a particular combination of medications to treat his Crohn's Disease, less than five months after diagnosis. Like "Hope's" daughter, his doctors did not consider a bone marrow transplant feasible until he was in remission and, of course, he never went into remission.

    Clearly, your doctors took a much different approach, and that approach (doing the transplant without waiting for full remission) saved your life. I would like to ask you several questions: (1) did your doctors ever publish the results of your treatment in a peer-reviewed journal? If so, can you provide me with the reference for the published article?; (2) If they did not publish, would they consider doing so? Doctors (and transplant centers) in the US probably will pay no attention to alternatives to their current (and ineffective) HSTCL protocol of waiting for remission, then doing the transplant, unless there has been something published that they can read; and (3) Was your HSTCL related in any way to drug therapy that you received to treat either Crohn's Disease or Ulcerative Colitis?

    Thank you for posting your very important information to this web site. I look forward to hearing from you.

    God bless,

    Ed Morawetz

    Crohn's disease and now HSTCL
    Ed and GodhealedCTR,

    My heart breaks hearing about your son- I am SO, so sorry for your loss...

    My husband was diagnosed with Crohn's Disease over 10 years ago. To help with Crohn's, he was on Remicade(6 years) and then switched to Humira(1 yr). Ryan was pretty healthy, but had a pretty stressful job. About a year ago he started having all these symptoms and they could not figure out what was wrong with him. After 4 months of mis-diagnosis and finally switching GI doctors, he was diagnosed with HSTCL in June of 09.
    (Ryan's doctors have not necessarily said that either the Remicade or Humira were the underlying cause of his HSTCL)

    He had 3 rounds of chemo over the summer and a bone marrow transplant in Sept of 09. He was in remission for 3 months and then two weeks ago we got DEVASTATING NEWS...it is back!

    Today (3-15-10), he received a new chemo called Pralatrexate with the hopes of getting the cancer under enough "control" so they can then give him more of his brothers stem cells to then get him into a "remission."

    My husband just celebrated his 30th b day in February...


    Godhealed, does CTR stand for Choose the Right?
    I would love any info you could send my way about your doctors treatment for you
    teamryanhess@gmail.com


    God Bless,
    Margie H

    You can find more info about Ryan and his treatment here:
    www.teamryanhess.blogspot.com
  • erm
    erm Member Posts: 16
    #39
    GodhealedCTR said:

    HSTCL treatment
    Hello Ed

    As a mother, you have my deepest sympathy on the loss of your beloved son. In response to your questions (1) No, my hematologist said that "one swallow doesn't make a summer" so it was not enough for him to publish my miracle cure. (2) I will be seeing him again in a few weeks time and will ask him if he would consider publishing. In 1999 when I was diagnosed, there was only a few handful of HSTCL articles on the net and the prognosis was extremely bleak with no survivors. (3) As advised to Gretchen in earlier chat, my condition was not related to any drug therapy. When it presented itself in Jul 1999, within a short space of 2 weeks it reached Stage 4. All my organs, except for kidneys, shut down and the doctors gave me 48 hrs to live.

    As indicated in my earlier postings, I had a few cycles of venesections because my ferritin levels are too high as a result of excessive blood transfusions in 1999/2000. My ferritin levels are still high at ~700 (norm count ~370) but that is much better than when I started a couple of years ago at >3,500.

    I do wonder what happened with the person who started this chat Forum, Valkyri31mh. I hope that sharing my miracle cure will in some small way help someone out there. Is there no way for the patient, in the US, persuade the doctors to carry out the stem cell transplantation without having to go into remission? On both occasions of my transplant, I was not in remission at all. The doctors were able to harvest enough stem cells from me for two transplants and even selected only good cells from one batch.

    When I see Dr Richard Herrmann again in a few weeks, I will try to get more information of my autologuous transplant regime from him to post onto this forum.

    Meanwhile, stay positive and may the good Lord bless all of you.

    CTR in Perth, Western Australia

    HSTCL treatment
    Hello CTR,

    Thanks for your most recent post. I haven't been on this site for awhile, so am just seeing it now.

    You and your doctor may know this already, but although HSTCL is still rare, its incidence is growing as a result of the use of biologic drugs (like Remicade) in combination with thiopurine immunesuppressants (like 6-mercaptopurine or Imuran) to treat Crohn's Disease (CD) and Ulcerative Colitis (UC) in America. It still has a very poor prognosis, and the US Food and Drug Administration (FDA) has now become concerned enough about the risks to require stricter warning labels on Remicade. Unfortunately, this is of litle use since patients recieve Remicade by infusion, never see the packaging and the warning, and are often unaware of the risks. FDA staff have also published several articles in the Journal of Pediatric Gastroenterology and Nutrition (JPGN) which strongly suggest an elevated risk of HSTCL among young men who receive these drugs to treat CD and UC. If it would encourage your doctor to publish your case study, I would be happy to send you references/internet links to these JPGN articles and to the FDA warnings.

    God bless you, and thank you again for all of the information you have posted on this site. It may well be the first step towards saving more people's lives.

    Ed
  • erm
    erm Member Posts: 16
    #40
    Hessner said:

    Crohn's disease and now HSTCL
    Ed and GodhealedCTR,

    My heart breaks hearing about your son- I am SO, so sorry for your loss...

    My husband was diagnosed with Crohn's Disease over 10 years ago. To help with Crohn's, he was on Remicade(6 years) and then switched to Humira(1 yr). Ryan was pretty healthy, but had a pretty stressful job. About a year ago he started having all these symptoms and they could not figure out what was wrong with him. After 4 months of mis-diagnosis and finally switching GI doctors, he was diagnosed with HSTCL in June of 09.
    (Ryan's doctors have not necessarily said that either the Remicade or Humira were the underlying cause of his HSTCL)

    He had 3 rounds of chemo over the summer and a bone marrow transplant in Sept of 09. He was in remission for 3 months and then two weeks ago we got DEVASTATING NEWS...it is back!

    Today (3-15-10), he received a new chemo called Pralatrexate with the hopes of getting the cancer under enough "control" so they can then give him more of his brothers stem cells to then get him into a "remission."

    My husband just celebrated his 30th b day in February...


    Godhealed, does CTR stand for Choose the Right?
    I would love any info you could send my way about your doctors treatment for you
    teamryanhess@gmail.com


    God Bless,
    Margie H

    You can find more info about Ryan and his treatment here:
    www.teamryanhess.blogspot.com

    Crohn's Disease and HSTCL
    Dear Margie--thank you for your condolences. My heart breaks for you and Ryan as well, having to live with Crohn's Disease (CD), and now HSTCL.

    Like Ryan's doctors, my son's doctors also had a very difficult time figuring out what was wrong with him in the fall of 2007. His pediatric gastroenterologist (Chris was 17 when his CD was diagnosed, and a week short of his 20th b'day when the HSTCL developed) even implied that Chris was just "high strung", and that his pain wasn't as bad as he described it. Within six weeks of that brilliant observation, the cancer was diagnosed, and five months later, my son was dead.

    If your husband's GI docs aren't admitting the likely connection between Remicade and HSTCL, that's because they're in major denial about the dangers of biologic drugs like Remicade or Humira for CD patients, especially young males. The risks are worse when biologics are combined with a second immune-suppressant like 6-MP or Imuran, and even the FDA is now starting to admit that there is an elevated risk of HSTCL for CD patients receiving these drugs. FDA has issued statements about the likely connection between these treatments and HSTCL, and FDA staff have published several articles documenting the increasing number of HSTCL cases. I can send Ryan's doctors references or internet links to these statements and articles if you would like. If they haven't done so already, they should immediately report Ryan's illness to FDA's AERS/MedWatch reporting system. I know that doctors are reluctant to do this, but they have to report these life-threatening illnesses so that FDA understands the number of people whose lives have been affected by this devastating disease.

    I am sorry to go on so long, especially when your only concern at the moment is that Ryan get well. I am just so anxious to have the full extent of the risks of these drugs documented, so that others might avoid what has happened to Chris and Ryan. I will pray for both of you, and I know that the one whose love is unending and unconditional is standing next to you and Ryan every minute of the day.

    God bless,

    Ed
  • Gretchen Harder
    Gretchen Harder Member Posts: 13
    #41
    GodhealedCTR said:

    HSTCL - >10 years in remission
    Hello Gretchen

    I've been searching through the archives and unfortunately could not find my treatment regime. If you wish, your specialist could contact my hematologist: Dr Richard Herrmann
    http://www.clinipathpathology.com.au/about-us/pathologists/pr-list/dr-richard-herrmann.aspx
    Please give me your doctor's information and I will email Richard authorising him to release my treatment information.

    My last two chemos followed by auto transplants were carried out as an inpatient at the Royal Perth Hospital in Western Australia. It is my belief that the draconian regime of 5 chemos followed by 2 back-to-back auto transplant 7 weeks apart within a space of 6 months was crucial to hitting the cancer on the head. The doctors did not wait for my blood results to improve before embarking on the next chemo. I'm not sure what your son's liver counts are but I thought perhaps I could give you mine for comparison. Just before I started the auto transplant my LFT was Bilirubin 19, Alk Phs 417, ALT 499 and Albumen 31.

    Prior to my diagnose, I was in a very stressful job and travelling regularly. I was not on any immuno-suppressant drugs. Aside from feeling really tired for some time, when the symptoms started presenting itself, it went quickly to Stage 4 within a space of 2 weeks.

    It's also important to have a wholistic approach towards healing - spiritual, diet, positive outlook, relaxation and avoiding infections. My prayers are with you.

    HSTCL - 10 years in remission
    Hi, GodhealedCTR,

    Thank you for your response. Sorry to be so slow in getting back to you. I thought I had the site set up to notify me when there was activity, but apparently not!

    My son's oncologist is Dr. Andrei Shustov at Seattle Cancer Care Alliance/Fred Hutchinson Cancer Research Center in Seattle, Washington.

    Once again we are disappointed because Rob was put on track for an allo transplant this month, but taken off the list because he isn't in remission, still too much lymphoma in his system. At the present time his white cells are all lymphoma blasts. He has been getting Romadepsin (aka Istodax) the last 3 weeks, but it appears that while the HSTCL takes a hit, it comes roaring right back. Same old story. We have managed to keep him infection free, but we have kept ourselves isolated during this ordeal to minimize the risk. I am interested in your story, because, like the others posting here, remission has been a requirement for transplant, and none of these cases can get there, the HSTCL is just so aggressive. Also, once you are on the transplant "team" there are 2 weeks of testing of your systems to be sure you are fit for transplant. Rob was actually demoted 1st because he still has an open wound that hasn't healed from his splenectomy back in July. In seeing what could be done to mitigate that, they discovered the lymphoma on the rise again. So, your case is so different in that you were not in remission and you were in very bad shape.

    I would definitely encourage your doctor to publish your case. There are so few cases of this disease that I don't think there is enough research into it, maybe not enough incentive to research it. Maybe those of us posting can make a difference somehow - we've got the interest.

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