Hepatosplenic T-cell Lymphoma

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  • Alghazal
    Alghazal Member Posts: 4
    #142
    GodhealedCTR said:

    Transplant Protocol
    Hello Nancy

    I have emailed my Transplant Protocol to you. I went into a neurotoxic coma for about 10 days with the first protocol. Subsequently, my hematologist slowed down the second round and it (coma) didn't recur.

    The US doctors may not be keen on the harsh toxic protocol I underwent but one has to fight fire with fire. In any case, in 1999, there were no known survivors of this disease and seeing that I was given no chance of survival, my feelings were that I have nothing to lose but everything to gain. The draconian treatment was definitely not a walk in the park and it was horrible for my loved ones to see me undergo all the awful side effects, pain and suffering from the chemo and transplantation.

    The (global) prayers and overwhelming support from friends and family played a large part in my fight. It was important for me that during my darkest hours, my family had to have faith that God will heal me. In the worse case scenario that I did not survive, it was critical that my family hang on to that faith as I would have gone to Heaven to be with God - so win/win situation. Death comes to all of us but it's always hardest on the survivors.

    So please count your blessings and live your lives without regrets.

    God bless, Theresa
    Perth, Western Australia

    Please help me with the protocol

    Dear Godhealed CTR 

    Thank you for your inspiration can you please let me know how to reach to your medical center and consultant ASAP

    e-mail elghazallogien@gmail.com 

    Thank you

  • Alghazal
    Alghazal Member Posts: 4
    #143
    777Driver said:

    Hepatosplenic T-Cell Gamma/Delta Lymphoma

    Hi all,

    Just wanted to offer this regarding my personal knowledge of a complete remission case of this rare disease.  My twenty-four year old nephew was diagnosed in 2000 with Hepatosplenic T-cell Gamma/Delta Lymphoma.  He lived in Florida at the time and went up to New York to be treated at Sloan Kettering.  He was there for about a year during which time they treated him with chemo (not sure which kind), radiation to the spleen, two stem cell transplants (his brother was the donor), a monoclonal antibody therapy during the second stem cell transplant (Campath), and ultimately they removed his spleen.   He left New York almost one year to the day he entered the hospital and returned to Florida.   That was fourteen years ago and he is alive and fine.

    You can read a little bit about what he inspired here:

     http://www.garrykravit.com/fpol.html

     

     

    Desperate and in need for urgent help

    Dear 777 Driver 

    Can you please send me any contact details nephew as it would be truly a life saver, my only brother is suufering from this disease in 2014 June, he is resistant to chemo and asked him to go home with no further treatment can be done, we are in pain to watch him like this and he is not in believe that what is happening is true,

    Can you let hime conact me on 

    elghazallogien@gmail.com 

    00353872682157

     

    Thank you for sharing your experience 

  • Lubna
    Lubna Member Posts: 6
    #144
    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.

    please your help!!

    Hello;

    My name is Lubna My brother is diagnose the same as your son this year 5 months ago  he went through chemo here in saint james hospital Dublin Ireland , but after the last chemo the lymphoma came back in only 3 weeks and havebeen sent home the day before telling us their is no further treatment to be done can you please give the name of your sons doctor  in MD anderson we are planning to go to the states as soon as posiible .

    Thank you 

    Lubna 

  • yesyes2
    yesyes2 Member Posts: 591
    #145
    Lubna said:

    sharing the same pain

    Hi Charlie :

     My name is Lubna from Dublin Ireland ,How are you and how is your husband , your story really touched me because my brother who is only 21 years old have a hepatosplenic lymphoma went through IVAC chemo, and the lymphoma came back in only 3 weeks after 4 months treatment , we had hope for him to go through transplant but it didnt happen  , he was sent home just yesterday and we are very depressed and my mum is devistated watching her son suffering physically and emotionally waiting for nothing  , he had an autoimmune disease were he after developed cancer because of the Immurane that he was takeing , I saw the date of your story back in 2011 if you can help me or have any advice for me I will be greatfull 

     Thank you , God bless you and your family 

    Information for Lubna

    Hello Lubna,  My name is Leslie and your plea for help is so very heart felt.  I'm sorry your brother , you and your family are having to deal with this.  Please go up 2 posts from yours to Danyabushey.  I believe he has information which could help you.  You could email him at danyabushey@hotmail.com.

    I hope this will help you.  God bless, my prauers are with you.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #146
    monda said:

    hepatosplenic t-cell lymphoma

    Hello

    Nope you are dpoing well I would like to chat with you if possible my daughter have jsut been diagnosed with the exact same as you. Please let me know.

     

    Thank you

    Monda

    Some resources

    T-Cell Lymphomas (and Leukemias) are rare and poorly understood malignancies. The largest group of T-Cell Lymphomas is called "NOS" - not otherwise specified. That simply means that they are an unknown type or subtype. Anyone with a T-Cell diagnosis needs the advoce and/or care of a T-Cell specialist. One of the doctors at Fred Hutchinson has created a foundation that is designed to assist T-Cell Leukemia and Lymphoma patients in obtaining a correct diagnosis and correct treatment. It can be a lifesaver.

    http://tcllfoundation.org/

    They have also developed a list of T-Cell Specialists who may be consulted for advice on treatment and clinical trials.

    http://tcllfoundation.org/resources/

    I am multi-posting this so that the word can get out. I am currently in my 5th treatment regimen and 11th drug for "AITL-like" PTCL-NOS. But, I have 6 1/2 years into this journey, having begun it at stage 4B with 50+ tumors and bone marrow involvement. It is survivable, but time is of the essence once it arrives. 

  • Lholloway
    Lholloway Member Posts: 2
    #147
    mark6016 said:

    t-cell lymphoma
    my wife was dianosed with this horrible cancer five years ago and had a auto transplant at m.d.anderson but it came back last year and spread into her liver .So she went back to M.D Anderson but they sent her home to die we contacted a doctor in bardstown kentucky and he put her on a experimental chemo in june and now she is cancer free and going to vanderbilt for a stem cell transplant. if i can give you any information just let me know

    Hepatosplenic T cell lymphoma

    Hello, I read your post and would like to know the dr in bardstown you worked with. My daughter was recently diagnosed  and is in Texas now for second opinion. How is your wife doing now? Thanks for your help. God bless.

  • Lholloway
    Lholloway Member Posts: 2
    #148
    mark6016 said:

    t-cell lymphoma
    my wife was dianosed with this horrible cancer five years ago and had a auto transplant at m.d.anderson but it came back last year and spread into her liver .So she went back to M.D Anderson but they sent her home to die we contacted a doctor in bardstown kentucky and he put her on a experimental chemo in june and now she is cancer free and going to vanderbilt for a stem cell transplant. if i can give you any information just let me know

    Hepatosplenic T cell lymphoma

    Hello, I read your post and would like to know the dr in bardstown you worked with. My daughter was recently diagnosed  and is in Texas now for second opinion. How is your wife doing now? Thanks for your help. God bless.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #149
    Lholloway said:

    Hepatosplenic T cell lymphoma

    Hello, I read your post and would like to know the dr in bardstown you worked with. My daughter was recently diagnosed  and is in Texas now for second opinion. How is your wife doing now? Thanks for your help. God bless.

    T-Cell specialist is needed

    These are rare and aggressive, and there is no standard therapy. MD Anderson is a great place to go - not just for a second opinion, but for actual treatment. There, or Seattle Cancer Care Aliiance, Dana Farber, Memorial Sloan Kettering, Columbia, are the"go-to" treatment centers for T-Cell Lymphomas.

  • Wendy T
    Wendy T Member Posts: 1
    edited February 2017 #150
    Hepatosplenic T-cell lymphoma

    My husband was just diagnosed with Hepatosplenic T-cell lymphoma.  We are looking for a doctor who has had success with this disese.  I don't see recent posts in this forum.  If anyone has information on a doctor, pleasec contact me.

    wtheall1@cox.net

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #151
    Wendy T said:

    Hepatosplenic T-cell lymphoma

    My husband was just diagnosed with Hepatosplenic T-cell lymphoma.  We are looking for a doctor who has had success with this disese.  I don't see recent posts in this forum.  If anyone has information on a doctor, pleasec contact me.

    wtheall1@cox.net

     

    At hand

    Note PoGuy's post immediatly above your own. He is the lay T-Cell expert here, very likely knowing more about where to get the best T-cell care than most oncologists.  T-cell is not discussed a lot because it is extraordinarily rare, but if you rtrace Po's responses, you will see that it does get occasional mention.

    Email him directly with the "CNS Email" for quickest response.

    max

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited February 2017 #152
    Wendy T said:

    Hepatosplenic T-cell lymphoma

    My husband was just diagnosed with Hepatosplenic T-cell lymphoma.  We are looking for a doctor who has had success with this disese.  I don't see recent posts in this forum.  If anyone has information on a doctor, pleasec contact me.

    wtheall1@cox.net

     

    Pathology is everything

    Sorry to hear this. Pathology is crucial, as mistakes are made in diagnosis. I strongly suggest a second opinion from a major pathology lab at a cancer research insititute or university teaching hospital. As to particular doctors who have had success with it, there are likely quite a few. The problem is that treatment is not defined and disease response to treatment is widely varied. Thus, clinical trials figure prominently in first-line therapy. A few resources: a research hemoatologist at Fred Hutchinson/Seattle Cancer Care Allliance has established a foundation to support T-Cell Leukemia and Lymphoma patients. I am biased here, as he has saved my life three times now. http://www.tcllfoundation.org/

    Here is a short article on "HSTCL" http://www.tcllfoundation.org/blog/learning-corner/learning-corner/hepatosplenic-t-cell-lymphoma-hstcl 

    Another reource is the Lymphoma Research Foundation: http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6296735

    And their information page on T-Cell Lymphomas: http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300159

     

  • Maria45
    Maria45 Member Posts: 1
    #153
    Lholloway said:

    Hepatosplenic T cell lymphoma

    Hello, I read your post and would like to know the dr in bardstown you worked with. My daughter was recently diagnosed  and is in Texas now for second opinion. How is your wife doing now? Thanks for your help. God bless.

    Hepatosplenic T cell lymphoma

    Hello, My brother has been diagnosed with hepatosplenic T cell lymphoma. We are feeling quite helpless. Does anyone know of a specialst in US or Canada who has treated this particular cancer? I would like to know what the best treatment option is. Thank you

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited August 2017 #154
    Maria45 said:

    Hepatosplenic T cell lymphoma

    Hello, My brother has been diagnosed with hepatosplenic T cell lymphoma. We are feeling quite helpless. Does anyone know of a specialst in US or Canada who has treated this particular cancer? I would like to know what the best treatment option is. Thank you

     

    There are several specialists

    There are specialists at Columbia, Memorial Sloan Kettering, Dana Farber, Moffit , MD Anderson, Seattle Cancer Care Alliance and probably at UCLA and others. You may find the nearest National Cancer Institute designated comprehensive cancer center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

    As to the best treatment option, there is no standard treatment for any systemic T-Cell Lymphoma, save for ALCL/ALK-. You must rely on the competence of the hematologist and the research which he or she accesses in making their determination.

     

  • po18guy
    po18guy Member Posts: 1,505 Member
    #155
    Maria45 said:

    Hepatosplenic T cell lymphoma

    Hello, My brother has been diagnosed with hepatosplenic T cell lymphoma. We are feeling quite helpless. Does anyone know of a specialst in US or Canada who has treated this particular cancer? I would like to know what the best treatment option is. Thank you

     

    Information is power

    Here is a short article on HSTCL written by my hematologist: http://www.tcllfoundation.org/blog/learning-corner/learning-corner/hepatosplenic-t-cell-lymphoma-hstcl

  • kb-believe
    kb-believe Member Posts: 3
    #156
    Wendy T said:

    Hepatosplenic T-cell lymphoma

    My husband was just diagnosed with Hepatosplenic T-cell lymphoma.  We are looking for a doctor who has had success with this disese.  I don't see recent posts in this forum.  If anyone has information on a doctor, pleasec contact me.

    wtheall1@cox.net

     

    Hepatosplenic T-Cell lymphoma

    My husband's son was just diagnosed with this.  Very few people have experience with this cancer because it is so rare.   He is going through 6 rounds of CHOEP (chemo regime) to hopefully put the cancer into remission - and then the plan is to undergo a stem cell (bone marrow) transplant.   So many patients I've read about either had Crohn's, or had transplants, and the drugs used to treat them reportedly caused the cancer.  But this is not the case with my stepson.  We don't know why or how this horrible cancer found its way to him.  Prayers to you and your husband.

     

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