Hepatosplenic T-cell Lymphoma

valkyrie31mh
valkyrie31mh Member Posts: 1
Hi friends!
I was diagnosed with Hepatosplenic T-cell Lymphoma in February of this year. I am currently undergoing chemotherapy and would love to share experiences with anyone else who has this monster!
I am a 38 year old mother of two, registered nurse, who before February was the picture of health. I first went to the doctor because everytime I ate, even 1/2 a sandwich, I felt full. The doctor and I both thought it was a bowel obstruction, but the cat scan showed an enormous spleen and bloodwork should pancytopenia (low blood counts on everything). A bone marrow biopsy confirmed lymphoma and I had immediate surgery to remove my diseased spleen. I have just completed chemo round #5 and am looking at chemo through August (at least). I am receiving CHOP therapy every 3 weeks and have been doing well except lately a little depression has settled in. I am waiting on some bone marrow results right now - hoping that the chemo is working. If anyone out there has this rare form of t-cell lymphoma, I'd love to chat with you.
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Comments

  • kymmc
    kymmc Member Posts: 3
    That is exactly what I was told I had in November of 2001. I also went through the CHOP and then in May of 2002 I received a bone marrow transplant. My diagnosis was changed in Feb. 2001 to Non-Hodgkins T-Cell Lymphoma. I did a lot research and the original diagnosis just didn't fit me and I refused to accept the grim survival rate. And finally my Doctor told me about a Lymphoma specialist in Nebraska and I meet with him, and he agreed with me and told me he thought I was treatable. After my transplant I became very depressed and still have very "blue" days. I think it is because when I wake up every day I wonder if I am going to be well today. The constant trips to the doctors and the anticipation of whether or not I will "pass" my blood test, bone marrow, cat scan, etc. It is hard. I am fortunate to have a great family to support me. But, there is the dark side that is hard to talk to them about because they don't understand what I have gone through. You are the first person I have heard of that has been diagnosed with this and would really love to talk with you.
    Kym


    That is exactly what I was told I had in November of 2001. I also went through the CHOP and then in May of 2002 I received a bone marrow transplant. My diagnosis was changed in Feb. 2001 to Non-Hodgkins T-Cell Lymphoma. I did a lot research and the original diagnosis just didn't fit me and I refused to accept the grim survival rate. And finally my Doctor told me about a Lymphoma specialist in Nebraska and I meet with him, and he agreed with me and told me he thought I was treatable. After my transplant I became very depressed and still have very "blue" days. I think it is because when I wake up every day I wonder if I am going to be well today. The constant trips to the doctors and the anticipation of whether or not I will "pass" my blood test, bone marrow, cat scan, etc. It is hard. I am fortunate to have a great family to support me. But, there is the dark side that is hard to talk to them about because they don't understand what I have gone through. You are the first person I have heard of that has been diagnosed with this and would really love to talk with you.

    Kym
  • FrankMN
    FrankMN Member Posts: 1
    kymmc said:

    That is exactly what I was told I had in November of 2001. I also went through the CHOP and then in May of 2002 I received a bone marrow transplant. My diagnosis was changed in Feb. 2001 to Non-Hodgkins T-Cell Lymphoma. I did a lot research and the original diagnosis just didn't fit me and I refused to accept the grim survival rate. And finally my Doctor told me about a Lymphoma specialist in Nebraska and I meet with him, and he agreed with me and told me he thought I was treatable. After my transplant I became very depressed and still have very "blue" days. I think it is because when I wake up every day I wonder if I am going to be well today. The constant trips to the doctors and the anticipation of whether or not I will "pass" my blood test, bone marrow, cat scan, etc. It is hard. I am fortunate to have a great family to support me. But, there is the dark side that is hard to talk to them about because they don't understand what I have gone through. You are the first person I have heard of that has been diagnosed with this and would really love to talk with you.
    Kym


    That is exactly what I was told I had in November of 2001. I also went through the CHOP and then in May of 2002 I received a bone marrow transplant. My diagnosis was changed in Feb. 2001 to Non-Hodgkins T-Cell Lymphoma. I did a lot research and the original diagnosis just didn't fit me and I refused to accept the grim survival rate. And finally my Doctor told me about a Lymphoma specialist in Nebraska and I meet with him, and he agreed with me and told me he thought I was treatable. After my transplant I became very depressed and still have very "blue" days. I think it is because when I wake up every day I wonder if I am going to be well today. The constant trips to the doctors and the anticipation of whether or not I will "pass" my blood test, bone marrow, cat scan, etc. It is hard. I am fortunate to have a great family to support me. But, there is the dark side that is hard to talk to them about because they don't understand what I have gone through. You are the first person I have heard of that has been diagnosed with this and would really love to talk with you.

    Kym

    Hi there!

    My name is Frank. I'm a 24 year old student from the Netherlands. Four weeks ago my girlfriend's sister got ill (constant high fever, sweating etc.). After the usual tests for virusses and bacterias the doctors diagnosed the hepatosplenic T-cell Lymphoma (about a week ago now). She lives in Scotland and was studying to be a fine doctor herself someday (28 years old). Now things are different. Yesterday I returned from Scotland (Edinbrugh) to the Netherlands after a first critical period (she got the first CHOP-chemo). Fortunatly she seems to respond to the treatment, despite a fever (39C) which worries us all. The great risks in this stage is the chance of the cancer returning before the next chemo-cycle (3 weeks), or a possible infection. For the family its hard to see her brighten up at the moment, whilst knowing the grim survival rates. In my attempt to find more information on the internet I passed this website, and saw your messages. How are you doing right now? Given the rariry of this type of cancer I thought I should respond. I looked up several treatments: bone-marrow transplants (from herself or from her brother/ sister) and radioimmunotherapy. The doctors said the latter was only common in the case of B-cells. What are your experiences? Do you know why this cancer is mainly found with young males? And have you ever considered a holistic treatment rather then, or in combination with conventional approaches? I myself tend to see things from the scientific perspective, but I feel I can't 'permit' myself to 'miss' any important information. I don't think we'll have a lot of opportunities to chat due to the time gap, and I can't share my personal experience with the desease (because its my sister in law), but I'm interested in how you are doing and how we could possibly share some experiences/ stories/ information. I will check this site frequently, and maybe be could chat sometime. For now I wish you both all the best.

    Kind regards,

    Frank
  • timsgal
    timsgal Member Posts: 3
    tcell lymphoma
    I too have been diagnosed with Heptasplenic t-cell lymphoma. I am presently at MD Anderson in Houston for a second opinon. I was first told in July I had autoimmune hepatitis after steriod treatment failed they sent me to Tulane in New Orleans a liver biopsy was done and that was the findings. After a bone marrow biopsy and ct as well as a second liver biopsy it showed I had no other involvement other than liver - not spleen or bone marrow which was surprising. It does not fit the normal criteria. Only in liver, rare but very possible. That is why I am having the second opinion. If I have to go through all the chemo and tansplants then I have to make sure. I will have my third set of biopsies tomorrow and hopefully have a definate answer by friday. The only symptoms I had were terrible fatigue, some fever at the beginning, and pain in my upper right side. Those symptoms persist to this day. I also had the fullness after any consumption of food or drink. It is so hard to find good info online but I do know it is very rare and very deadly. I am still holding on to the fact they have miss diagnosed me but the test done at Tulane were very extensive. I am scared and just cant believe what has happened.
  • Jer8226
    Jer8226 Member Posts: 1
    timsgal said:

    tcell lymphoma
    I too have been diagnosed with Heptasplenic t-cell lymphoma. I am presently at MD Anderson in Houston for a second opinon. I was first told in July I had autoimmune hepatitis after steriod treatment failed they sent me to Tulane in New Orleans a liver biopsy was done and that was the findings. After a bone marrow biopsy and ct as well as a second liver biopsy it showed I had no other involvement other than liver - not spleen or bone marrow which was surprising. It does not fit the normal criteria. Only in liver, rare but very possible. That is why I am having the second opinion. If I have to go through all the chemo and tansplants then I have to make sure. I will have my third set of biopsies tomorrow and hopefully have a definate answer by friday. The only symptoms I had were terrible fatigue, some fever at the beginning, and pain in my upper right side. Those symptoms persist to this day. I also had the fullness after any consumption of food or drink. It is so hard to find good info online but I do know it is very rare and very deadly. I am still holding on to the fact they have miss diagnosed me but the test done at Tulane were very extensive. I am scared and just cant believe what has happened.

    t cell lymphoma
    Hey timsgal,
    My brother was recently diagnosed with Hepatospelic T-cell lymphoma also. He just recently left MD Anderson in Houston. They were able to confirm it and he started his chemo today. I really hope everything works out for you. If you are able to find any good info online please let me know. I've searched google many times and basically all I can find is lots of medical journal articles that I'm having a hard time understanding. Hope you start feeling better.
  • Summerwood Survivor
    Summerwood Survivor Member Posts: 5
    Jer8226 said:

    t cell lymphoma
    Hey timsgal,
    My brother was recently diagnosed with Hepatospelic T-cell lymphoma also. He just recently left MD Anderson in Houston. They were able to confirm it and he started his chemo today. I really hope everything works out for you. If you are able to find any good info online please let me know. I've searched google many times and basically all I can find is lots of medical journal articles that I'm having a hard time understanding. Hope you start feeling better.

    Hepatosplenic gamma delta T-cell lymphoma
    My wife was diagnosed with Hepatosplenic gamma delta T-cell lymphoma in November 2004 and is currently alive and well in Houston TX. There have been many ups and downs, but we thank God we found ourselves transferred to Houston, 30 minutes from MD Anderson, when she became ill. I am not sure what information I can share but I would like to answer any questions I can.

    There is not much information out there about this very rare disease. We have always considered that a blessing because we were never confronted with survival rates or someone else's track record. She was sort of a pioneer in the survival of this type of Cancer.
  • ncampbell722
    ncampbell722 Member Posts: 10
    FrankMN said:

    Hi there!

    My name is Frank. I'm a 24 year old student from the Netherlands. Four weeks ago my girlfriend's sister got ill (constant high fever, sweating etc.). After the usual tests for virusses and bacterias the doctors diagnosed the hepatosplenic T-cell Lymphoma (about a week ago now). She lives in Scotland and was studying to be a fine doctor herself someday (28 years old). Now things are different. Yesterday I returned from Scotland (Edinbrugh) to the Netherlands after a first critical period (she got the first CHOP-chemo). Fortunatly she seems to respond to the treatment, despite a fever (39C) which worries us all. The great risks in this stage is the chance of the cancer returning before the next chemo-cycle (3 weeks), or a possible infection. For the family its hard to see her brighten up at the moment, whilst knowing the grim survival rates. In my attempt to find more information on the internet I passed this website, and saw your messages. How are you doing right now? Given the rariry of this type of cancer I thought I should respond. I looked up several treatments: bone-marrow transplants (from herself or from her brother/ sister) and radioimmunotherapy. The doctors said the latter was only common in the case of B-cells. What are your experiences? Do you know why this cancer is mainly found with young males? And have you ever considered a holistic treatment rather then, or in combination with conventional approaches? I myself tend to see things from the scientific perspective, but I feel I can't 'permit' myself to 'miss' any important information. I don't think we'll have a lot of opportunities to chat due to the time gap, and I can't share my personal experience with the desease (because its my sister in law), but I'm interested in how you are doing and how we could possibly share some experiences/ stories/ information. I will check this site frequently, and maybe be could chat sometime. For now I wish you both all the best.

    Kind regards,

    Frank

    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.
  • ncampbell722
    ncampbell722 Member Posts: 10

    Hepatosplenic gamma delta T-cell lymphoma
    My wife was diagnosed with Hepatosplenic gamma delta T-cell lymphoma in November 2004 and is currently alive and well in Houston TX. There have been many ups and downs, but we thank God we found ourselves transferred to Houston, 30 minutes from MD Anderson, when she became ill. I am not sure what information I can share but I would like to answer any questions I can.

    There is not much information out there about this very rare disease. We have always considered that a blessing because we were never confronted with survival rates or someone else's track record. She was sort of a pioneer in the survival of this type of Cancer.

    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.
  • 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.

    hepatosplenic t cell lymphoma
    My wife had a Bone Marrow Transplant in May 2005; actually, it was a stem cell transplant from a Matched Unrelated Donor. She did not have a very difficult time with the transplant; although she still suffers from mild skin irritations.

    My wife was treated at MD Anderson by Dr. Sdran Verstovsek. He is primarily a Leukemia doctor, but he has an interest in rare types of blood cancers. I would suggest you search MDAnderson.org for more information.
  • ncampbell722
    ncampbell722 Member Posts: 10

    hepatosplenic t cell lymphoma
    My wife had a Bone Marrow Transplant in May 2005; actually, it was a stem cell transplant from a Matched Unrelated Donor. She did not have a very difficult time with the transplant; although she still suffers from mild skin irritations.

    My wife was treated at MD Anderson by Dr. Sdran Verstovsek. He is primarily a Leukemia doctor, but he has an interest in rare types of blood cancers. I would suggest you search MDAnderson.org for more information.

    Thank you so much
    I will certainly research this physicican I have been searching for someone anyone who has experience with this type and it has been very difficult to find anyone with this type of expertise. My nephew Eddie was diagnosed with Stage IV hepatasplenic t cell lymphoma and it has been an absolute nightmare trying to research and keep up with all involved. Would you please let me know if your wife had ever taken the drug Remicade or Imuran. The reason I would like to know is that this type of lymphoma is one of the adverse side effects of this medication, Eddie was taking this medicine for about 3 years for ulcerated colitis.

    Thank you so much!
  • ncampbell722
    ncampbell722 Member Posts: 10
    Jer8226 said:

    t cell lymphoma
    Hey timsgal,
    My brother was recently diagnosed with Hepatospelic T-cell lymphoma also. He just recently left MD Anderson in Houston. They were able to confirm it and he started his chemo today. I really hope everything works out for you. If you are able to find any good info online please let me know. I've searched google many times and basically all I can find is lots of medical journal articles that I'm having a hard time understanding. Hope you start feeling better.

    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.
  • Thank you so much
    I will certainly research this physicican I have been searching for someone anyone who has experience with this type and it has been very difficult to find anyone with this type of expertise. My nephew Eddie was diagnosed with Stage IV hepatasplenic t cell lymphoma and it has been an absolute nightmare trying to research and keep up with all involved. Would you please let me know if your wife had ever taken the drug Remicade or Imuran. The reason I would like to know is that this type of lymphoma is one of the adverse side effects of this medication, Eddie was taking this medicine for about 3 years for ulcerated colitis.

    Thank you so much!

    You're Welcome
    You're welcome. My wife has never taken Remicade or Imuran. Her Lymphoma symptoms just developed in late November 2004.
  • mww94602
    mww94602 Member Posts: 2
    Ncampbell - My younger
    Ncampbell - My younger brother was diagnosed with HSTCL in 7/07. He was also 20 and turned 21 following the diagnosis. He passed away from the cancer in 12/07 before he was able to have a stem cell transplant. He took Remicade and a drug called 6MP for several years, also for ulcerative colitis and all the doctors agreed this was the cause of his cancer. I'm so sad to read about your nephew (sometimes I search for the cancer to see if any progress has been made in treatment or if there are any new reports since it is so rare and seems to always be caused by these immunosupressant drugs.) The only advice I can give is that Dr. Owen O'Connor at Columbia Presbyterian has a clinical trial of a new chemo for T-cell lymphomas called Pralotrexate. (Not totally sure that is the right spelling.) My brother did not respond to chemotherapy (Hyper-CVAD and then PEGS). He was supposed to eventully have a stem cell transplant at Stanford, but he was never in remission long enough. We are from California and we took my brother to NY to see Dr. O'Connor. He was going to have his spleen removed so that he might be eligible for the clinical trial (he had to have a certain platelet count and his spleen was destroying the platelets which was why it needed to come out), but he passed away in NY before anything could be done. There are very specific requirements for admission to the clinical trial, so your nephew may not be eligible given his condition, plus I do not know if you have to be in NY or not, but who knows...everything is worth a try at this point. You might want to try contacting him. You should be able to find his email on the internet. I truly hope your nephew makes it. I am so sorry and I wish you and your family all the best.
  • ncampbell722
    ncampbell722 Member Posts: 10
    mww94602 said:

    Ncampbell - My younger
    Ncampbell - My younger brother was diagnosed with HSTCL in 7/07. He was also 20 and turned 21 following the diagnosis. He passed away from the cancer in 12/07 before he was able to have a stem cell transplant. He took Remicade and a drug called 6MP for several years, also for ulcerative colitis and all the doctors agreed this was the cause of his cancer. I'm so sad to read about your nephew (sometimes I search for the cancer to see if any progress has been made in treatment or if there are any new reports since it is so rare and seems to always be caused by these immunosupressant drugs.) The only advice I can give is that Dr. Owen O'Connor at Columbia Presbyterian has a clinical trial of a new chemo for T-cell lymphomas called Pralotrexate. (Not totally sure that is the right spelling.) My brother did not respond to chemotherapy (Hyper-CVAD and then PEGS). He was supposed to eventully have a stem cell transplant at Stanford, but he was never in remission long enough. We are from California and we took my brother to NY to see Dr. O'Connor. He was going to have his spleen removed so that he might be eligible for the clinical trial (he had to have a certain platelet count and his spleen was destroying the platelets which was why it needed to come out), but he passed away in NY before anything could be done. There are very specific requirements for admission to the clinical trial, so your nephew may not be eligible given his condition, plus I do not know if you have to be in NY or not, but who knows...everything is worth a try at this point. You might want to try contacting him. You should be able to find his email on the internet. I truly hope your nephew makes it. I am so sorry and I wish you and your family all the best.

    mww94602
    I am so sorry to hear about your younger brother, I know first hand how devastating that must have been for you and your family. The death of such a young man is a life altering event that is so difficult to overcome. I know I struggle with all the why's and how could this have happened and the desperate need to find someone who has this in common is somehow a blessing and a curse. I never in a million years ever dreamed such a tragic event could happen to someone in my family again. Now here we are hoping, praying and fighting right along with my nephew Eddie to somehow save him and make him well again. I guess the hardest part is being so helpless and not being able to do anything really to help him survive, and this is without a doubt the most difficult experience of my life.
    If you care to respond to my message I would just like to ask you a couple of things regarding your brother's Remicade treatment, if you don't mind that is. I was just wondering if the GI MD told your brother the warnings about this medication and if the MD actually monitored his blood during treatment. Eddie's doctors have said this diagnosis has nothing at all to do with UC. I have reported this occurrence to the FDA and to Remicade manufacturers. Since the MD's here have declined any involvement with Remicade I just wonder how many cases go unreported for fear of liability issues. So if I could get your input I would certainly appreciate it for I know I would not want this horrible disease to affect another life or the lives of other families as it has affected both your family and mine. I think one of the only things I can do right now for Eddie is to somehow prevent this from happening to others. If you do not want or wish to respond I most certainly understand and will respect your wishes.

    My best to you and your family,
    Nancy
  • mww94602
    mww94602 Member Posts: 2

    mww94602
    I am so sorry to hear about your younger brother, I know first hand how devastating that must have been for you and your family. The death of such a young man is a life altering event that is so difficult to overcome. I know I struggle with all the why's and how could this have happened and the desperate need to find someone who has this in common is somehow a blessing and a curse. I never in a million years ever dreamed such a tragic event could happen to someone in my family again. Now here we are hoping, praying and fighting right along with my nephew Eddie to somehow save him and make him well again. I guess the hardest part is being so helpless and not being able to do anything really to help him survive, and this is without a doubt the most difficult experience of my life.
    If you care to respond to my message I would just like to ask you a couple of things regarding your brother's Remicade treatment, if you don't mind that is. I was just wondering if the GI MD told your brother the warnings about this medication and if the MD actually monitored his blood during treatment. Eddie's doctors have said this diagnosis has nothing at all to do with UC. I have reported this occurrence to the FDA and to Remicade manufacturers. Since the MD's here have declined any involvement with Remicade I just wonder how many cases go unreported for fear of liability issues. So if I could get your input I would certainly appreciate it for I know I would not want this horrible disease to affect another life or the lives of other families as it has affected both your family and mine. I think one of the only things I can do right now for Eddie is to somehow prevent this from happening to others. If you do not want or wish to respond I most certainly understand and will respect your wishes.

    My best to you and your family,
    Nancy

    Hi Nancy,
    You can email me

    Hi Nancy,
    You can email me at [email protected]
  • alcorn
    alcorn Member Posts: 8 Member

    mww94602
    I am so sorry to hear about your younger brother, I know first hand how devastating that must have been for you and your family. The death of such a young man is a life altering event that is so difficult to overcome. I know I struggle with all the why's and how could this have happened and the desperate need to find someone who has this in common is somehow a blessing and a curse. I never in a million years ever dreamed such a tragic event could happen to someone in my family again. Now here we are hoping, praying and fighting right along with my nephew Eddie to somehow save him and make him well again. I guess the hardest part is being so helpless and not being able to do anything really to help him survive, and this is without a doubt the most difficult experience of my life.
    If you care to respond to my message I would just like to ask you a couple of things regarding your brother's Remicade treatment, if you don't mind that is. I was just wondering if the GI MD told your brother the warnings about this medication and if the MD actually monitored his blood during treatment. Eddie's doctors have said this diagnosis has nothing at all to do with UC. I have reported this occurrence to the FDA and to Remicade manufacturers. Since the MD's here have declined any involvement with Remicade I just wonder how many cases go unreported for fear of liability issues. So if I could get your input I would certainly appreciate it for I know I would not want this horrible disease to affect another life or the lives of other families as it has affected both your family and mine. I think one of the only things I can do right now for Eddie is to somehow prevent this from happening to others. If you do not want or wish to respond I most certainly understand and will respect your wishes.

    My best to you and your family,
    Nancy

    if I can help
    Hi there - if I can help in any way would love to do so. Just lost my husband (aged 45) to this disease here in Belgium. Am distraught at how aggressive it was (it took 6 months from diagnosis till the end, during which time the chemo had virtually no effect whatsoever). I too am upset that it appears to have been caused by Imuran, an immuno suppressant he took for about six years to keep ulcerative colitis under control. Please know that someone in Europe understands a little of what you are suffering and is thinking about your nephew, willing him to get well.........if I can help on any other level please say so. The time difference (01.30 here now) may make real time communication a little more difficult, but I would love to help.....my very very best to you and your family...
  • ncampbell722
    ncampbell722 Member Posts: 10
    alcorn said:

    if I can help
    Hi there - if I can help in any way would love to do so. Just lost my husband (aged 45) to this disease here in Belgium. Am distraught at how aggressive it was (it took 6 months from diagnosis till the end, during which time the chemo had virtually no effect whatsoever). I too am upset that it appears to have been caused by Imuran, an immuno suppressant he took for about six years to keep ulcerative colitis under control. Please know that someone in Europe understands a little of what you are suffering and is thinking about your nephew, willing him to get well.........if I can help on any other level please say so. The time difference (01.30 here now) may make real time communication a little more difficult, but I would love to help.....my very very best to you and your family...

    Alcorn, I am so sorry to hear about your husband.
    Please accept my condolences as I am sure you went through a horrible emotional six months with your husband with this terrible disease. To see him go through the pain and suffering I know was most difficult for you and your family.
    I am ever so grateful to you for responding because I have researched this disease this drug the symptons and the treatments and I am still trying to find out why the adverse side effect of these drugs are not taken more seriously by the physicians when on the front page of the 57 page label is a warning regarding Hepatosplenic Tcell lymphoma that occurs in young males. If you would like to email me at any time whatsoever (I check my email many time daily) I will send to you privately. I am so looking forward to your response!!! My email is [email protected] please send me an email at any time and we will definitely keep in touch.

    Thank you,
    [email protected]
  • timsgal
    timsgal Member Posts: 3
    confusion
    Did anyone out there have any confusion in the diagnosis of t-cell lymphoma. I was diagnosed with it in January of 09 at Tulane in New Oleans I have since had 4 liver biopsies 2 say I have it 2 say I dont. I have been to MD Anderson where my 3rd biopsy was done which came back negative. My dr.s at Tulane still believe I have it possible has gone into spontanious remission which I can find nothing on. I still am having problems with pain under right rib cage, fatigue and fluxuating liver enzymes. Tulane thinks I should start chemo, MD Anderson says no. I am so confused and tired of all this. Did anyone else have a misdiagnosis or problems making the diagnosis. I am going crazy here after 9 differnt doctors and all that goes with that for a year. Any imput would be appriciated. timsgal
  • erm
    erm Member Posts: 16
    timsgal said:

    confusion
    Did anyone out there have any confusion in the diagnosis of t-cell lymphoma. I was diagnosed with it in January of 09 at Tulane in New Oleans I have since had 4 liver biopsies 2 say I have it 2 say I dont. I have been to MD Anderson where my 3rd biopsy was done which came back negative. My dr.s at Tulane still believe I have it possible has gone into spontanious remission which I can find nothing on. I still am having problems with pain under right rib cage, fatigue and fluxuating liver enzymes. Tulane thinks I should start chemo, MD Anderson says no. I am so confused and tired of all this. Did anyone else have a misdiagnosis or problems making the diagnosis. I am going crazy here after 9 differnt doctors and all that goes with that for a year. Any imput would be appriciated. timsgal

    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
  • erm
    erm Member Posts: 16
    alcorn said:

    if I can help
    Hi there - if I can help in any way would love to do so. Just lost my husband (aged 45) to this disease here in Belgium. Am distraught at how aggressive it was (it took 6 months from diagnosis till the end, during which time the chemo had virtually no effect whatsoever). I too am upset that it appears to have been caused by Imuran, an immuno suppressant he took for about six years to keep ulcerative colitis under control. Please know that someone in Europe understands a little of what you are suffering and is thinking about your nephew, willing him to get well.........if I can help on any other level please say so. The time difference (01.30 here now) may make real time communication a little more difficult, but I would love to help.....my very very best to you and your family...

    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
  • erm
    erm Member Posts: 16

    Alcorn, I am so sorry to hear about your husband.
    Please accept my condolences as I am sure you went through a horrible emotional six months with your husband with this terrible disease. To see him go through the pain and suffering I know was most difficult for you and your family.
    I am ever so grateful to you for responding because I have researched this disease this drug the symptons and the treatments and I am still trying to find out why the adverse side effect of these drugs are not taken more seriously by the physicians when on the front page of the 57 page label is a warning regarding Hepatosplenic Tcell lymphoma that occurs in young males. If you would like to email me at any time whatsoever (I check my email many time daily) I will send to you privately. I am so looking forward to your response!!! My email is [email protected] please send me an email at any time and we will definitely keep in touch.

    Thank you,
    [email protected]

    Your nephew's HSTCL
    Dear NCampbell: I lost my 20-year old son, Chris, to HSTCL on 5/2/08. He had been treated with immunesuppressant drugs (Remicade and 6-mercaptopurine) for Crohn's Disease for about 2 years at the time of his diagnosis. I ask that you or his family report his disease to FDA's MedWatch site, because FDA seems to be less aggressive than they should be in alerting the GI community to the dangers of using immune-suppressant drugs (especially in combination, and especially in young males). I have written several letters to them and have even had a friend who is staff to the Senate Health Committee try to intervene on my behalf, to no avil; they still have not responded to my urgent letters that they: compel Centacor (Remicade's manufacturer--$4 billion in sales in 2007) to conduct more thorough research about the links between immunesuppressants and HSTCL; take more aggressive steps to alert GI doctors and patients about the deadly effects of these drugs. My best to you and your family.

    Ed