Autologous stem cell transplant

Silver02
Silver02 Member Posts: 14
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hello, I hope all is doing well

I was looking for posts regarding stem cell transplant but didn't find any so thought of making one. if you have had a stem cell transplant please do share your experience especially how you coped with the side effects post discharge, its concerning me the most.

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited April 2021 #2
    Several

    Silver02,

    Many of the folks here have had SCTs (I have not).   PoGuy, a regular, has relapsed 3 or 4 times, and has had I think two, but possibly 3, SCTs.  In total, he has received about 20 or 21 different chemo drugs.  Private Message him, or I'm sure he will check in soon.   Follicular NHL is notorious for relapse; a very commonn thing with that strain.

  • Silver02
    Silver02 Member Posts: 14
    edited April 2021 #3
    Max Former Hodgkins Stage 3 said:

    Several

    Silver02,

    Many of the folks here have had SCTs (I have not).   PoGuy, a regular, has relapsed 3 or 4 times, and has had I think two, but possibly 3, SCTs.  In total, he has received about 20 or 21 different chemo drugs.  Private Message him, or I'm sure he will check in soon.   Follicular NHL is notorious for relapse; a very commonn thing with that strain.

    Thank you

    Thank you so much for the input! Appreciate it

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    edited April 2021 #4
    Silver02 said:

    Thank you

    Thank you so much for the input! Appreciate it

    Also....

    In a more optimistic tone, I might add that follicular is usually well-maintained after relapse, or multiple relapses.  And for clarification, Po's lymphomas have been extremely rare T-cell varieties (and not any form of follicular).   Follicular is a very common strain, the most common indolent form of NHL.  Therefore, it receives a huge amount of research. 

    My disease, NLPHL, is 'sort of' the Hodgkin's equivalent to NHL follicular, in that it is very indolent also, and also subject to relapse.   But it is very rare, constituting only about 1 in every 200 lymphoma cases in the US or world.  I was reading a British journal several years ago, published by their institute of health.   It had an article about NLPHL, and saiid that England had had eight (8) known cases of NLPHL the previous year.  That gives you an idea.   Therefore, it receives virtually no research at all, and almost never any clinical studies.   A SCT for you should (statistically) yield very long term, if not permanent, remission.

  • Silver02
    Silver02 Member Posts: 14
    edited April 2021 #5
    Diagnosis

    Thank you for taking the time to explain about follicular lymphoma.

    I'm so sorry for not being clear at the beginning, I was diagnosed with mixed cellularity hodgkins lymphoma which then was categorized as recurrent refractory. The doctors said my best option was to get an autologous transplant which I did. I am currently 45 days post transplant. however, I'm still skeptical. the doctors say that my NED chances are very high but I heard that before and it wasn't. I don't know what to put my faith in. I'm just crossing my fingers for my 100 day pet scan.

  • po18guy
    po18guy Member Posts: 1,465 Member
    edited April 2021 #6
    Was scheduled for possibly 3 transplants

    Where to begin? Are you cponsidering a transplant? Scheduled for one? Recently underswent a transplant? All have answers with different needs, so to speak. As to autologous transplants, as a general rule they are difficult going into, but easier coming out of. Also generally, the intention is to completely ablate your marrow - destroy it in medical terms. To do this, there is an intense chemotherapy conditioning regimen, as well as the possibility of localized or even total body irradaition. Chemotherapy is administered on the order of 5-10 times normal strength. The thinking is that in such a chemo-saturated environment, no cancer cell could survive. Being in full response - complete remission - is the ideal condition for transplant.

    Since it is so intense, how does the patient survive? Well, it is done very short term, so that the typical cumulative effects of chemotherapy do not occur. Think of holding your hand over a burning candle. You would be severely burned. However, if you wave your hand over the candle, the same heat is applied, but for a much shorter time. Thus, damage is limited. If radiation is used, the dosage may be less than usual, as it is used in conjunction with the intense chemotherapy. 

    Autologous transplants, in which you receive your own blood stem cells, have virtually zero potential for graft-versus-host-disease, a condition similar to transplant rejection issues in organ transplants. There is a ton more, but this touches on the basics.  

  • janekren
    janekren Member Posts: 6
    edited April 2021 #7
    po18guy said:

    Was scheduled for possibly 3 transplants

    Where to begin? Are you cponsidering a transplant? Scheduled for one? Recently underswent a transplant? All have answers with different needs, so to speak. As to autologous transplants, as a general rule they are difficult going into, but easier coming out of. Also generally, the intention is to completely ablate your marrow - destroy it in medical terms. To do this, there is an intense chemotherapy conditioning regimen, as well as the possibility of localized or even total body irradaition. Chemotherapy is administered on the order of 5-10 times normal strength. The thinking is that in such a chemo-saturated environment, no cancer cell could survive. Being in full response - complete remission - is the ideal condition for transplant.

    Since it is so intense, how does the patient survive? Well, it is done very short term, so that the typical cumulative effects of chemotherapy do not occur. Think of holding your hand over a burning candle. You would be severely burned. However, if you wave your hand over the candle, the same heat is applied, but for a much shorter time. Thus, damage is limited. If radiation is used, the dosage may be less than usual, as it is used in conjunction with the intense chemotherapy. 

    Autologous transplants, in which you receive your own blood stem cells, have virtually zero potential for graft-versus-host-disease, a condition similar to transplant rejection issues in organ transplants. There is a ton more, but this touches on the basics.  

    Auto vs Allo

    Hi po18guy!

    I am trying to decide between an auto vs reduced intensity allo.  My understanding is that with auto, the high toxicity of the chemo is the treatment and with allo, the new marrow is the treatment and the chemo is only enough to weaken your immune system to accept the graft.  My concern is another relapse after the auto and having to undergo another BMT (allo).  I have already relapsed 3 times (twice after rituximab alone, once after obinituzimab + Bendamustine while in maintenance).  I just finished Rituximab + lenalidomide in Feb, but they expect that to only give me about a 12 month remission, so they want me to do a BMT now.  My MD is saying auto, but the MD I got a second opinion from is saying the reduced intensity allo is the way to go.  I don't know how to decide!  I really don't want to have a second BMT and from what the second MD said, the allo gives me a 70% chance of a cure!  Do you have any experience with allogenic transplants and the risks/complications with GVHD? 

    Jane

  • po18guy
    po18guy Member Posts: 1,465 Member
    #8
    janekren said:

    Auto vs Allo

    Hi po18guy!

    I am trying to decide between an auto vs reduced intensity allo.  My understanding is that with auto, the high toxicity of the chemo is the treatment and with allo, the new marrow is the treatment and the chemo is only enough to weaken your immune system to accept the graft.  My concern is another relapse after the auto and having to undergo another BMT (allo).  I have already relapsed 3 times (twice after rituximab alone, once after obinituzimab + Bendamustine while in maintenance).  I just finished Rituximab + lenalidomide in Feb, but they expect that to only give me about a 12 month remission, so they want me to do a BMT now.  My MD is saying auto, but the MD I got a second opinion from is saying the reduced intensity allo is the way to go.  I don't know how to decide!  I really don't want to have a second BMT and from what the second MD said, the allo gives me a 70% chance of a cure!  Do you have any experience with allogenic transplants and the risks/complications with GVHD? 

    Jane

    A different world...

    ....are T-Cell Lymphomas from the much more common B-Cell Lymphomas. It seems that B-Cells respond to autologous transplants even after relapse, whereas autologous transplants after relapse with T-Cell Lymphomas are far more likely to fail. Even if you undergo an autologous transplant and it eventually fails ("IF!"), you still have the option of an allogeneic transplant. As well, you have the meantime to seek a donor, just in case. GvHD, while much better controlled than in past yearsm can still be fatal - something to ponder seriously. I would carefully consider the advice of your hematologist. If you do not have a hematologist, but rather an oncologist, it is good to seek a second opinion on transplant from a transplant hematologist. 

  • Unbreakable1
    Unbreakable1 Member Posts: 14 Member
    edited August 2021 #9
    po18guy said:

    Was scheduled for possibly 3 transplants

    Where to begin? Are you cponsidering a transplant? Scheduled for one? Recently underswent a transplant? All have answers with different needs, so to speak. As to autologous transplants, as a general rule they are difficult going into, but easier coming out of. Also generally, the intention is to completely ablate your marrow - destroy it in medical terms. To do this, there is an intense chemotherapy conditioning regimen, as well as the possibility of localized or even total body irradaition. Chemotherapy is administered on the order of 5-10 times normal strength. The thinking is that in such a chemo-saturated environment, no cancer cell could survive. Being in full response - complete remission - is the ideal condition for transplant.

    Since it is so intense, how does the patient survive? Well, it is done very short term, so that the typical cumulative effects of chemotherapy do not occur. Think of holding your hand over a burning candle. You would be severely burned. However, if you wave your hand over the candle, the same heat is applied, but for a much shorter time. Thus, damage is limited. If radiation is used, the dosage may be less than usual, as it is used in conjunction with the intense chemotherapy. 

    Autologous transplants, in which you receive your own blood stem cells, have virtually zero potential for graft-versus-host-disease, a condition similar to transplant rejection issues in organ transplants. There is a ton more, but this touches on the basics.  

    How long is the process for a

    How long is the process for a stem cell transplant? How long is recovery?

  • innersol
    innersol Member Posts: 1
    #10
    Unbreakable1 said:

    How long is the process for a

    How long is the process for a stem cell transplant? How long is recovery?

    I had an autologous stem cell

    I had an autologous stem cell trasnplant about 18-months ago. It was the hardest thing I went through physically and emotionally in my life, but it did get better. It took a while though. In the first nine months there was overall weakness that would come and go. I can't exactly do what I used to do physically --running fast, swimming fast, etc. like I used to before the transplant, but I can jog slowly and I can do slow laps in the pool. Some of it may just be age. If you have specific questions please post and I can try to answer.

  • Sandy Ray
    Sandy Ray Member Posts: 143 Member
    #11
    Unbreakable1 said:

    How long is the process for a

    How long is the process for a stem cell transplant? How long is recovery?

    Length and process

    It will be impossible for anyone to answer your question about Stem cell transplant accurately. I have had one and there are so many variables. Not every stem cell transplant is the same. For some it is a relatively short compared to others. Your Oncologist for the transplant can give you a much better idea. Before I started I asked and they can give you some idea. Of course even they do not know how long it will take for your body to provide enough stem cells for the transplant to. For many transplants you must first have chemo to put you into remission. Then before the stem cell transplant you receive chemo and the type will determine how long and how tough it will be. Once you receive stem cells it is up to your body how long it takes them for engraftment. The next hurdle is to have your bone marrow working enough to allow you to go home.

    Now all that is not to discourage or to not answer your question. There is just no way to know. However , rest assured it is doable. Everyone copes differently. To look at is a whole can be overwhelming just get through each step and focus on one day at a time. Set small goals and make it one goal at a time with the ultimate goal to be somewhat healthy again. During my roughest days my goal was to make it to the end of the day and hope tomorrow would be better. Today things are better and I try not to invite trouble. If it is to come it will come just enjoy the good days.

    Sandy Ray

    My stem cell transplant was 2020.

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