Autologous stem cell transplants

Bart T
Bart T Member Posts: 62 Member

I'm set to have an autologous stem cell transplant next week. I finished six cycles of chemo and the chemo has beaten the cancer into remission. I have EATL lymphoma which is a T-cell lymphoma. I'd love to hear from anyone who has undergone the procedure. I don't really know what to expect other than the fact that the doctors have let me know it will be rough. For those who have gone through it, how were you feeling at the 3-month mark and the one-year mark? Were you able to function mentally during your hospitalization? Was it difficult dealing with the isolation? Any comments or insights will be greatly appreciated. Thanks.

Comments

  • po18guy
    po18guy Member Posts: 1,499 Member
    edited January 21 #2

    Very sorry to hear of your new challenge. I underwent a haploidentical transplant, with my son as donor. Mine was a moderate-intensity prep regimen and did not completely ablate my marrow. However, I was 100% chimeric at 26 days. No, it is not easy, and while every transplant is different, recovery should be fairly easy. Generally, the younger you are the easier recovery will be. You will not have the concern of Graft-versus-Host-Disease (GvHD), so a big plus.

    Basically, Autologous transplants are harder going into and easier coming out of., as there is no Graft-versus-Host-Disease, which can be ftal. Allogeneic transplants are often slightly easier going into and more difficult in recovery.

    The transplant itself is perhaps the most anti-climactic event of my entire journey. It amounted to a transfusion of pale appearing blood. However, at that point, your marrow is producing zero cells, thus your body quickly notices. I spent much time curled up into the fetal position, as I had energy for nothing else. My opinion is that your body is at the point of shutting down, but your mind knows that the procedure is survivable. Therefore, your will to live will drive your recovery. Nursing staff will have you up and walking as much as you can, as exercise seems to stimulate the cells to engraft and begin producing more stem cells.

    There were a few days when I barely had the energy to speak a complete sentence. In my case, my stem cells engrafted and began producing blood cells at about day 10. During that time my appetite was zero and I had no desire to eat, but had to, so I was prescribed Marinol (synthetic THC) which jump-started my appetite. After just a few days, my desire to eat was rekindled. I am probably older than you, so I suspect that your recovery and the lack of GvHD will have you up and around fairly quickly.

  • tamarabehrendt
    tamarabehrendt Member Posts: 3 Member

    I posted for the first time this morning and have had no response, so I am just going to try to make connections. It was very helpful to read about the bone marrow transplant, because that is what our local oncologist has told us will happen at Mayo. My husband, a 66 year old active guy, was diagnosed last week with Mantle Cell Lymphoma. We are waiting to hear from Mayo. We don't know how the transplant will be handled at this point, or anything about the plan. We are just hanging tough with dr visits and transfusions as needed until we get an appointment with Mayo. I don't really know how this site works but I am trying to find any way to get support to get us through this.

  • Bart T
    Bart T Member Posts: 62 Member

    Thank you for your response and your words of encouragement. It's always good to hear from people who have been there and done that. Seems to me that doctors, mostly downplay the severity of recovery from procedures as they have no have first-hand experience. Misery generally looks easier from a distance. Post-procedure doctors have little face time with their patients, leaving most of that to the nurses.

    Tomorrow I’ll be on my third, and hopefully last, day of the stem cell extraction process. The actual removal process is painless, but some of the drugs they gave me have magnified the chemo side effects I’ve been dealing with.

    FYI, I'm 71, but still too stubborn to let this beat me, and will just take one day at a time. Thanks again for your response. 


  • po18guy
    po18guy Member Posts: 1,499 Member

    Sorry, but this forum has only a few active members. Even fewer who have had transplants. He was diagnosed last week and already scheduled for a transplant? Usually one must be in remission or close to it, since a transplant wipes out the marrow leaving essentially no immune system (for a time) to fight the lymphoma. Maybe you can clarify a bit here.

  • po18guy
    po18guy Member Posts: 1,499 Member
    edited January 25 #6

    Bart, some do not survive transplant - it varies from 10-20+% but we have little option at that point. It is truly a bridge of sighs which we must cross. However, those who do poorly are the patients who have co-morbidities, are older than you or I, or both. You may be scheduled as an outpatient - the caveat here is tat most of us develop a neutropenic fever and must go in-patient for 1-2 weeks. If that occurs, you will have many neighbors who are also post-transplant. When you feel like talking, they will be there. You can either encourage or receive encouragement. With any and all questions, someone here will be able to help.

  • tamarabehrendt
    tamarabehrendt Member Posts: 3 Member

    He is not scheduled for a bone marrow transplant. Our local oncologist said that is what he thought Mayo would do. We got our final diagnosis Wednesday, Jan 17th. The PET scan showed involvement in a large number of lymph nodes so we were immediately referred to Mayo Clinic in Rochester, Mn. We got a call from them Monday, Jan 22nd. We are scheduled to be Monday, the 29th. We have no idea what to expect as far as treatment goes. We have been told they will most likely wipe out as many cancer cells as possible and all white cells for a bone marrow transplant. I assume that cannot be autologous, since his bone marrow is compromised? Kurt has a son and a sister that could be donors, but also do not know how that works.

  • po18guy
    po18guy Member Posts: 1,499 Member

    Mantle Cell is an aggressive lymphoma. As bad as this sounds, the more aggressive they are, the more vulnerable they are to treatment. It is a type of B-Cell Lymphoma, and those are the best known type, with various treatment options available. It sounds like they are concerned with relapse, and sadly, lymphomas are known for that. A stem cell transplant seems his best opportunity to place it in long-term, possibly permanent remission. As to donors, they "may" decide to harvest his own marrow cells once he is in remission. However, a donor transplant may also be appropriate.

    The Lymphoma Research Foundation has much info available on both Mantle Cell as well as the various types of transplant.

    https://lymphoma.org/wp-content/uploads/2023/04/LRF_Mantle_Cell_Lymphoma_Factsheet.pdf

    https://lymphoma.org/wp-content/uploads/2020/11/LRF-Transplant-Guide-2018.pdf

    The more you read, the more confidence you will have going into this.