Autogulous Stem cell transplant for DLBCL

Hello @crickettrapp and welcome to Connect. Having gone through all the treatments for diffuse large B-cell lymphoma (DLBCL), I can’t imagine your disappointment and frustration when you learned of a relapse. It sounds like your doctor has recommended an autologous stem cell transplant for you. This would be using your own cells which have been harvested, preserved, then returned to your blood stream after you’ve gone through another course of treatment.

There are a number of members in the forum who were diagnosed/treated for DLBCL and have gone through secondary treatments such as ASCT (auto-transplants) and more-so, CAR-T cell therapy.
I’m going to tag @ckeys who had an auto transplant several years ago. I’m not sure they’re active in the forum right now but tagging them may send a notification if they’re still signed on.

In the meantime, while you’re waiting for members who have had an ASCT to respond, there are also numerous discussions with DLBCL members such as @j0318 @emmiet @fwpoole and others. Having had a blood cancer myself, I find it to be uplifting to talk with others who share the same diagnosis…helps to not feel so alone in the journey.
I did a quick search and if you click this link it will open to several pages of DLBCL conversations. Feel free to pop into any of them.
https://connect.mayoclinic.org/search/?search=DLBCL
As I mentioned earlier there are a couple members who had CAR-T therapy for their DLBCL. While not all members in this CAR-T group had DLBCL like @kirkwilliams2049 @annberkowitz it might be interesting to explore this as a potential option as well.
CAR-T cell therapy: Introduce yourself and connect with others.
https://connect.mayoclinic.org/discussion/car-t-cell-therapy-introduce-yourself-and-connect-with-others/
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Did anyone undergo Car-T therapy for B cell lymphoma?
https://connect.mayoclinic.org/discussion/car-t-therapy-for-b-cell-lymphoma/
When is your target date for transplant? Do you have any specific questions about the procedure?

CAR T was magical for me. Three rounds of RGDP left the DLBCL lingering and was severely impacting my kidneys. I had CAR T and 30 days later was clear. This was in February 2024.

Good luck and best wishes! And remember: Positivity is the best therapy!

Hello @crickettrapp

I am so sorry to hear of your relapse. I was diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) in December of 2023. By the time of diagnosis, I had multiple tumors in my body as well (stomach, lungs, brain). Because of the brain tumors, mine was also classified as CNS lymphoma.

I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. I had good results with this treatment and am now 14 months post treatment remission. The final phase of my treatment was to include an autologous bone marrow transplant but I was unable to complete the transplant after chemotherapy due to insufficient stem cells.

Since I have not received the transplant I cannot offer any experience with this but @loribmt and other members here are able to help you navigate this process. Wishing you good success with this next phase of your treatment and as @kirkwilliams2049 stated, a positive outlook can be so helpful for success.

Please reach out if you need more support as you proceed with your treatment. We are here for you.

Prayers for you!
I had a 26 month remission prior to my recent ASCT! Truthfully, my stats were so good we felt I’d beaten it the first go round but alas, it reared its ugly little head in February as a late relapse. I then did RICE chemotherapy ( 3 cycles) followed by stem cell collection, BEAM eradication chemotherapy then my Stem cell transplant. I just cannot find many DLBCL ASCT patients to gauge the success rate. Truthfully, the stats I do find on the internet are wishy washy so I’m looking for real patient stories !
Hang in there! Thanks for the information.

Hi @crickettrapp,

Thank you for sharing your experience with a longer remission before relapse and your treatments received after this. I too have had my eye on the 24 month remission window as a significant milestone and your experience certainly brings a new perspective for this expectation.

I appreciate as well you sharing the next treatments you have received after relapse and prior to transplant. I know my hematologist has mentioned the possibility of autologous transplant (provided my stem cells are adequate for collection) or CAR-T if I do relapse.

I forgot to mention that the autologous transplant was supposed to be part of my initial treatment only because of the CNS system involvement with the brain tumors. Apparently there is a higher chance of relapse. Just adding here for future reference for other members since DLBCL treatment (with no CNS involvement) doesn’t include transplant initially in most cases.

Sending you my best wishes for great success with your transplant. Please take care and keep us posted. I will be looking forward to hearing of your recovery and lasting remission!

Yes! My first staging was a 2. I had RCHOP. Remission of 26 months.
Relapse in February, still a stage 2 but an Autogolous Stem Cell Transplant.
My cancer has stayed above the diaphragm each time.

Hi Again @crickettrapp,

Again I really appreciate you sharing your experience to date. I am wishing you good success with a more lasting remission now that you have received the transplant. And my apologies in my earlier comments as I misread thinking you had not yet received the transplant.

And hopefully other DLBCL members here who have received transplants can offer experience with remission success after transplant. I can only offer that my research prior to starting the transplant process seemed to indicate a much higher success rate with DLBCL after transplant.

Be well, take care and enjoy each day - you have accomplished a lot in your treatment! Wishing you all the best.

It means more than you know that you care enough to share. I’m loving every second of life. Optimism is key. Thanks for all.

I appreciate your sharing here as well @crickettrapp and well said about optimism being key for success. One final thought for you to locate other DLBCL members who have gone thru transplant…..maybe make a new post titled something like “DLBCL with Auto Transplant - Looking for Member Experiences with Remission” …. maybe that will generate the feedback you are looking for.

With my experience being unable to receive the transplant I was disappointed and of course worried. But I was fortunate enough to correspond with another CNS lymphoma patient treated at Mayo who was also unable to receive the transplant after chemotherapy. She is now 5+ years into remission so she is my beacon of hope!

Hopefully you will also find success stories as well. Thanks again for sharing here and looking forward to seeing your progress. Take care.

I’ll do it! Thank you so much!