Non Hodgkins T-cell Lymphoma

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  • miss maggie
    miss maggie Member Posts: 929
    #22
    jnova said:

    Hello Baddad. I recently battled T-Cell lymphoma (stage III), and I am glad to say that I am in remission and feeling better than ever. I was treated at Weil Cornell Medical Center in NYC and underwent CHOP chemo as well as a stem cell transplant. I would love to talk with you about my experience.

    Hello Jnova
    Hello,

    I am so glad you read you are in remission, and feeling better than ever.

    I don't have T - Cell Lymphoma. I was DX with NHL in Sept 09 after my small bowel
    perforated which was caused by NHL. I was treated with Rituxan only, and hopefully
    in remission as of Jan 2011. My exact sub-type is Extranodal marginal zone b cell, NHL. I was treated at Montifiore-Albert Einstein Hospital in NYC. Supported by the NCI.

    I have attended many conferences that Cornell, Columbia Pres sponsored. I am very familiar
    with the doctors at both hospitals. I know they are one in the same. If you don't mind, can
    you tell me which doctor you are seeing? Even though I am in remission, if things should
    change, I would not hesitate going to Cornell, Columbia Pres for another opinion, or treatment.. Not sure if I can say we are lucky??? But, we do have at our disposal in NYC,
    some great cancer hospitals. Without traveling long distances.

    Continued remission. Love Maggie
  • sawilliams79
    sawilliams79 Member Posts: 9
    #23
    LarrySurvivor6 said:

    I have survived t cell
    I have had 6 rare cancers in the last six years. I am in remission since a little over a year ago. I feel fine . I enjoy every day I am 63 with a suporting family. I caught this one early but was told this very difficult to treat. I have had parotiod, prostate, skin, two kinds of aggressive thyroid cancer and now lymphoma I forget how to pronounce. I feel good but worry over every little bump or peculiarity. Hang in there everyone. One thing I did notice when i started feeling sorry for myself I talk to God gave him my trust, I have a strong family and I have a good repore with a few Drs at cleveland Clinic.

    t cell lymphoma
    Hello,
    what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
    Thanks a bunch,
    Sheila sa_williams79@yahoo.com
  • sawilliams79
    sawilliams79 Member Posts: 9
    #24
    LarrySurvivor6 said:

    I have survived t cell
    I have had 6 rare cancers in the last six years. I am in remission since a little over a year ago. I feel fine . I enjoy every day I am 63 with a suporting family. I caught this one early but was told this very difficult to treat. I have had parotiod, prostate, skin, two kinds of aggressive thyroid cancer and now lymphoma I forget how to pronounce. I feel good but worry over every little bump or peculiarity. Hang in there everyone. One thing I did notice when i started feeling sorry for myself I talk to God gave him my trust, I have a strong family and I have a good repore with a few Drs at cleveland Clinic.

    t cell lymphoma
    Hello,
    what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
    Thanks a bunch,
    Sheila sa_williams79@yahoo.com
  • sawilliams79
    sawilliams79 Member Posts: 9
    #25
    LarrySurvivor6 said:

    I have survived t cell
    I have had 6 rare cancers in the last six years. I am in remission since a little over a year ago. I feel fine . I enjoy every day I am 63 with a suporting family. I caught this one early but was told this very difficult to treat. I have had parotiod, prostate, skin, two kinds of aggressive thyroid cancer and now lymphoma I forget how to pronounce. I feel good but worry over every little bump or peculiarity. Hang in there everyone. One thing I did notice when i started feeling sorry for myself I talk to God gave him my trust, I have a strong family and I have a good repore with a few Drs at cleveland Clinic.

    t cell lymphoma
    Hello,
    what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
    Thanks a bunch,
    Sheila sa_williams79@yahoo.com
  • amandacg12
    amandacg12 Member Posts: 1
    #26
    Survivor
    I was diagnosed with stage 4 Non Hodgkins T-cell Lymphoma when I was 19. I had chemo for 6 months and then a stem cell transplant. I got one day of CHOP, but complications immediately caused my kidneys to fail & I went into septic shock. When all was said and done, most of my colon was removed and I had a colostomy bag for a while. They started CHOP again soon after and all went well. And here I am 21 years old, alive to tell the story!
  • po18guy
    po18guy Member Posts: 1,465 Member
    #27
    sawilliams79 said:

    t cell lymphoma
    Hello,
    what kind of chemo were you doing during your treatments? My dad was diagnosed today with t cell aggressive nhl. He did the chop today and maybe the ice next time. It is so scary thinking only 20 percent are cured after the first six treatments. they also discussed having a stem cell transplant when he is done since it may come back. Three weeks ago they told us it is stage two but the lumps on his neck are popping up everyday. I am so scared and don't know what to think about all of this. I'm trying to stay positive but with this being so rare there is not a lot of info out there. if there is any advice that would be great!!
    Thanks a bunch,
    Sheila sa_williams79@yahoo.com

    Get a second!
    Please have your dad get a second opinion if it is at all possible. I suggest a lymphoma specialist at a large treatment center. This can be crucial to a good outcome. A second opinion saved my life. I hope that he is receiving R-CHOP, as CHOP alone has a so-so record against T-cell malignancies. Stay in touch.
  • po18guy
    po18guy Member Posts: 1,465 Member
    #28
    amandacg12 said:

    Survivor
    I was diagnosed with stage 4 Non Hodgkins T-cell Lymphoma when I was 19. I had chemo for 6 months and then a stem cell transplant. I got one day of CHOP, but complications immediately caused my kidneys to fail & I went into septic shock. When all was said and done, most of my colon was removed and I had a colostomy bag for a while. They started CHOP again soon after and all went well. And here I am 21 years old, alive to tell the story!

    Thank the Lord!
    It is good news indeed that you are alive and, hopefully, well. These T-cell cancers are really something to contend with, but they can be survivable. Attitude is very important in the fight. Sounds like you have a good one.
  • KerryWenman
    KerryWenman Member Posts: 5
    #29
    sublime86 said:

    Hi my name is shane im 18 soon 19 and i was diagnosed with t-cell lymphoblastic Non-Hodgkin in late januruary of 05. Ive gone through 6 rounds of chemo so far out of 8 and im currently in remeission and im going to be having a bone marrow transplant soon. I was in stage 3 im pretty sure. Im doing the MD Anderson protocalor Hyper C-vad and it seems to be working extremely well. I cant say im a survivor yet but i will be and you will to with the right mind set you can do anything. email me at PIMPdaddycsc20@hotmail.com sounds immatuer but im only 18 and normal. Good luck to u.

    Hi Shane, I haven't seen you
    Hi Shane, I haven't seen you post on here again, I have the same diagnosis Jan 2010 with T-cell Acute Lymphoblastic Lymphoma stage IV, 8 rounds of hyper CVAD gained remission, POMP maintenance relapsed 10 months later, 2 rounds of ICE now hoping for an Allo bone marrow transplant Feb 2012, really would like to know how you are going?
    All the best to everyone on here :-)
    Kerry 44 yrs
    Perth, Western Australia
  • Rhondas daughter
    Rhondas daughter Member Posts: 3
    #30
    po18guy said:

    Thank the Lord!
    It is good news indeed that you are alive and, hopefully, well. These T-cell cancers are really something to contend with, but they can be survivable. Attitude is very important in the fight. Sounds like you have a good one.

    Hoping and Praying
    Hey everyone! This is my first time posting to a board, so hopefully I'm doing this right :) My mother was diagnosed with NH Peripheral T-Cell Lymphoma in Sept 11' and has had 6 rounds of CHOP chemo. She had a Petscan in Decemeber that had shown a 50% reduction and we find out the results from another Petscan today. If it's gone down enough she will go in for a stem cell transplant on Feb 1st and radiation after the transplant is complete. We have never really been told what stage she is in but that it is centralized and that is a good thing (in her shoulder). Like others have said, it's difficult to find information on this type of cancer and would really love to hear your stories and opinions. I'm very scared and getting nervous (though I never show her that!) the transplant is getting so close.

    Thanks!
  • po18guy
    po18guy Member Posts: 1,465 Member
    #31
    Rhondas daughter said:

    Hoping and Praying
    Hey everyone! This is my first time posting to a board, so hopefully I'm doing this right :) My mother was diagnosed with NH Peripheral T-Cell Lymphoma in Sept 11' and has had 6 rounds of CHOP chemo. She had a Petscan in Decemeber that had shown a 50% reduction and we find out the results from another Petscan today. If it's gone down enough she will go in for a stem cell transplant on Feb 1st and radiation after the transplant is complete. We have never really been told what stage she is in but that it is centralized and that is a good thing (in her shoulder). Like others have said, it's difficult to find information on this type of cancer and would really love to hear your stories and opinions. I'm very scared and getting nervous (though I never show her that!) the transplant is getting so close.

    Thanks!

    A second opinion?
    My PTCL was an unspeificied variety, which is a rather large unknown group of T-Cell lymphomas. My oncologist did not use CHOP, as it has a poor record against T-cell lymphomas. If your mom is responding to it, great! I received dose intensive CHOEP (CHOP + Etoposide) followed immediately by GVD over four months. I immediately relapsed and was offered a clinical trial. It has put me in complete response and kept me there for almost three years. If your mom has a donor available for a transplant, good! There is none for me, but neither do I need one just now.

    Since there is no recommended treatment for many of the T-Cell lymphomas, a second opinion (no matter how much you love your doctor) can save your life. I most highly recommend one.
  • Rhondas daughter
    Rhondas daughter Member Posts: 3
    #32
    po18guy said:

    A second opinion?
    My PTCL was an unspeificied variety, which is a rather large unknown group of T-Cell lymphomas. My oncologist did not use CHOP, as it has a poor record against T-cell lymphomas. If your mom is responding to it, great! I received dose intensive CHOEP (CHOP + Etoposide) followed immediately by GVD over four months. I immediately relapsed and was offered a clinical trial. It has put me in complete response and kept me there for almost three years. If your mom has a donor available for a transplant, good! There is none for me, but neither do I need one just now.

    Since there is no recommended treatment for many of the T-Cell lymphomas, a second opinion (no matter how much you love your doctor) can save your life. I most highly recommend one.

    My mothers PTCL is
    My mothers PTCL is unspecified as well. We found out at the Doc yesterday that this recent scan showed no change so we are now holding off on the stem cell transplant and she having 2 rounds of ICE chemo with the transplant to follow. I guess this isn't terrible news because we want her as close to remission as possible before the tranplant, but it's not the news we were hoping for either.

    You're right, we really feel confident in her oncologist and transplant doctor but a second opinion may be a good thing...anyone have any tips for making sure you're finding a really great doctor for a second opinion? I'm just not sure where to start again as the oncology/hemotology center she goes to is supposed to be the best in the city.
  • sawilliams79
    sawilliams79 Member Posts: 9
    #33
    po18guy said:

    Get a second!
    Please have your dad get a second opinion if it is at all possible. I suggest a lymphoma specialist at a large treatment center. This can be crucial to a good outcome. A second opinion saved my life. I hope that he is receiving R-CHOP, as CHOP alone has a so-so record against T-cell malignancies. Stay in touch.

    t cell lymphoma
    Hey there,
    Well, my dad has gone through 3 chemo treatments of chop and had a ct scan done. His oncologist is very pleased with the results and so we are going to do another 3 rounds of chemo (chop) and then do a pet scan. When he was diagnosed it was stage two (in his neck and armpit). Doctor said that most of the lymph node are gone or really small. He is scared of what will be next after the next three treatments. I'm guessing a stem cell transplant since t cell is more then likely to come back. My fiance got a job across the us so i'm waiting here until everything is in the clear. Hope everyone is doing well.
    sheila
  • po18guy
    po18guy Member Posts: 1,465 Member
    #34
    Rhondas daughter said:

    My mothers PTCL is
    My mothers PTCL is unspecified as well. We found out at the Doc yesterday that this recent scan showed no change so we are now holding off on the stem cell transplant and she having 2 rounds of ICE chemo with the transplant to follow. I guess this isn't terrible news because we want her as close to remission as possible before the tranplant, but it's not the news we were hoping for either.

    You're right, we really feel confident in her oncologist and transplant doctor but a second opinion may be a good thing...anyone have any tips for making sure you're finding a really great doctor for a second opinion? I'm just not sure where to start again as the oncology/hemotology center she goes to is supposed to be the best in the city.

    Think "best in the country"
    Please consider searching nationwide for a second opinion. I receive treatment in Seattle at SCCA (Fred Hutchinson), and I credit the knowledge and skill of my oncologist there with saving my life. No authority on earth can advise an oncologist what to use against PTCL, so it was a complete trust issue. He defeated my PTCL with a combo that I have not seen used anywhere else: 4 cycles of dose-intensive CHOEP (aka EPOCH) followed immediately by 4 cycles of GVD. I have been on non-chemo Istodax (aka Romidepsin) for almost three years now since relapse, and being NED, currently have no need of a transplant. In any event, there are no donors for me and receiving my own cells will leave me susceptible to relapse. So, here I remain.
  • Lorriexoxo
    Lorriexoxo Member Posts: 5
    #35
    Any updates on T-Cell Lymphoma survivors?

    Hey everyone! Please share your survivor stories of TCell Lymphoma. I need some inspiration coz my dad has just been diagnosed.  Hope to hear from you!

  • po18guy
    po18guy Member Posts: 1,465 Member
    #36
    Lorriexoxo said:

    Any updates on T-Cell Lymphoma survivors?

    Hey everyone! Please share your survivor stories of TCell Lymphoma. I need some inspiration coz my dad has just been diagnosed.  Hope to hear from you!

    This thread is 12 years old

    However, I have survived two similar T-Cell Lymphomas for over seven years. It is crucial that a correct diagnosis be confirmed and that a T-Cell specialist is consulted with. Many oncologists/hematologists will use the CHOP regimen, but it is not very effective, and thjere is little time to waste. There are several better drugs/regimens out there. You may find more information here: TCLLfoundation.org/

    I am a moderator at www.cancerforums.net and we have a good group of T-Cell Lymphoma patients there.

  • kayyla93
    kayyla93 Member Posts: 1
    edited February 2018 #37
    Any body still checks this?

    Hi! My name is Kayla and a friend of mine was diagnosed last year. He relapsed and needs a boost of hope.  Is there anyone still in remission/ doing okay?

  • po18guy
    po18guy Member Posts: 1,465 Member
    #38
    kayyla93 said:

    Any body still checks this?

    Hi! My name is Kayla and a friend of mine was diagnosed last year. He relapsed and needs a boost of hope.  Is there anyone still in remission/ doing okay?

    Where is your friend located?

    Hello! Sorry that you have to come here under these circumstances. Sadly, relapse drops the prognosis from poor to extremely poor. I hope that he is being seen by a research hematologist - and particularly one that specializes in T-Cell Lymphomas. If he is in the states, he can locate the closest National Cancer Institute designated comprehensive cancer center here: https://www.cancer.gov/research/nci-role/cancer-centers/find

    As well, he may want to consider a clinical trial, as the newest drugs are less toxic and hold the potential to be much more effecive than what has been used in recent years. Clinical trials may be found here, by diagnosis: www.clinicalrtrials.gov/

  • Fiat127
    Fiat127 Member Posts: 10
    edited March 2018 #39
    didi1031 said:

    Hi, I am new to the site. I was diagnosed with T-cell NHL in 12/2001. I underwent CHOP and RT and was in remission for a whole two months. Now, I am going to undergo a bone marrow transplant. My brother and sister are both a match. Is it a lot like what you went through? I am really concerned and very scared. I am alone most of the time and have too much time to sit and think. My husband doesn't like dealing with it so he works all the time and is not home until I am in bed. We never talk, and I am just so lonely through all of this. Please send me a message and help me better understand what I am about to face - ALONE.

    Hi didi 1031

    I was diagnosed in Jan 2017 and after CHOP i was in CR short lived because the decease spread to my liver and lung as well as a mass under my clavicular bone.

    Gone through ESHAP salvage terapy and am now awaiting to go in for SCT.

    How are you doing?

    Please could you give me feed back on your experience/

    Grateful and thank you.

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