Would like to know the risks of BMT verses chemo.

Good morning, @lcarrswan. You’ve already been on quite a ride with your AML. Having been there myself, it felt like being on a roller coaster speeding through a bizarre labyrinth of physical and mental challenges, emotional trials and the ultimate test of endurance. Did I just about sum that up??😅

Let’s tackle the issues you mentioned. You started with induction chemo and that wasn’t well tolerated, causing fluid on the lungs. Switching to V&V has worked really well, putting you into remission. That’s fantastic. But I also understand if there’s the opportunity to not have monthly chemo and opt for long term recovery you’d want to go for that!
And from experience, your being in remission would be a good vantage point to start the BMT process. The cleaner we go into the transplant, the more likely for a better outcome.

These are first thoughts based on my experience. And maybe by expressing these thoughts you’ll have ideas for questions for your BMT doctor.
Which, by the way, I highly recommend meeting with a transplant doctor to see if you’re a good candidate for the transplant.

Here are my thoughts based on what I’ve learned with the BMT process:
~The preconditioning chemo for the BMT is quite strong, more so than the induction chemo. It would be important to get feedback as to tolerance of that regimen.

~ Ask if GVHD could be a concern, especially for your lungs. The new immune system can become aggressive with the white blood cells potentially targeting the lungs. But the gvhd might also be mitigated with preemptive meds. There have been some great breakthroughs in gvhd prevention since my transplant 6 years ago!

~Since sarcoidosis is an autoimmune disease, the BMT may also reverse that! So, besides being the potential cure for your AML it may also cure your sarcoidosis.

I can’t stress enough the importance of seeking out a transplant team from a larger teaching hospital. They will have a deeper bench of experienced specialists to help you work through the this process. Having a BMT isn’t a walk on the beach but it can be an amazing 2nd chance at life. Like I said, I’m coming up on 6 years the end of June. I’m now 71 and feel amazingly healthy and fit.
It’s definitely worth speaking with a transplant doctor to get some of your questions answered. I’m here for you anytime as a sounding board, along with many other members in the forum who have gone through the BMT journey.
Are you near a large transplant center?

Hi Lori,
Thanks for your quick response. I have read several of your posts and that is what encouraged me to get my doctor talking about the BMT again.

I agree that starting the process now while I’m feeling stronger is better than waiting for the V & V to stop working. I am a patient at Oschner New Orleans Cancer Center which is now an MD Anderson facility. My hematologist actually did his residency at MD Anderson Houston. He had a meeting with the transplant team and I am waiting to hear from them to discuss moving forward.

I appreciate the advice on the questions for the transplant team. If there is anything else you feel is pertinent to ask them please let me know. Any publications that you know of that I can access for questions would be appreciated.

You are an inspiration and I wanted to thank you for taking the time to help so many others. Congratulations on your great success and god bless you.
Lori

Hi Lori, When I was going through all the medical drama with AML and the transplant 6 years ago, I can guarantee you the last thing on my mind was being able to offer hope to anyone else going through the same issues. I didn’t have a mentor or know of a single soul who had endured the same adventures. It wasn’t until about 1.5 mo after the transplant that I felt the value of mentorship when I met two people briefly, who offered me encouragement, inspiration and above all, hope. So that’s why I’m here! We all need that dangling carrot. 😁

You’re in excellent hands at your cancer center with their connection to MDAnderson! Equally as reassuring to have your current hematologist a former resident from there! I hope you get the all clear to go ahead. Being stronger and healthy going into the BMT mission can really work in your favor, along with your obviously positive attitude!

Publications on BMT are numerous. But for now I’d really suggest not searching too much online. As with most anything, people tend to write about negative experiences. When in reality, while the first few months post BMT wouldn’t make the top ten list of enjoyment, the outcome is an opportunity for a 2nd chance at life. That alone can be worth the effort and potential risks.

Other questions, besides the previous suggestions:
~You might ask if you’ll be an in-patient or an outpatient for the transplant, where you’d remain near the clinic but convalesce offsite for a period of time.
~What is the length of time you’ll need to be near the clinic?

During a transplant consultation, the doctor would generally talk about finding a donor, (they do that for you) the protocol for transplant, the medication regimen, and expectations…yours and theirs.
For now, I’d wait to hear back from your doctor about the possibility of the transplant. The we can go over some of the information that you may have questions about.

Would you have to relocate for the transplant or do you live nearby?

For me,
'Lori's words-------------When in reality, while the first few months post BMT wouldn’t make the top ten list of enjoyment, the outcome is an opportunity for a 2nd chance at life. That alone can be worth the effort and potential risks.
I honestly took it a day at a time. After i had each chemo in conditioning. In the hospital and the whole experience. and asked myself how i felt. My 100 days after 24 days in the hospital was at my friend's home. Day 100 i went home. Up till now, 1 year, I have had no GVHD.

I had BMT 8.5 years ago for AML. My doctors told me that for my cancer mutations chemotherapy was a short term fix, which meant that cancer would return. I really didn’t have any hesitation about getting a transplant since I was near death at the time of my diagnosis.

The transplant and recovery was rough for me. I developed an acute GVHD of upper and lower GI. My doctors were able to stop that with steroids. I was GVHD free for several years and then developed skin GVHD. I’m on Jakafi for that, and it’s under control.

I’m very glad that Be The Match found me a donor and my transplant was successful. Everyone has to make that decision when facing an AML diagnosis, but I strongly recommend that you listen to your doctors and ask questions. They are the experts and will be able to guide you through the process. Talk to other transplant recipients and ask questions. Wishing you a successful recovery and a long life!

Thank you for sharing your experience. If I get the green light to do the BMT, I know it won’t be easy. I am working to get my full strength back right now and gaining weight back, (I lost 30 pounds after the my tow stays in the hospital). I’m still waiting for the transplant coordinator to reach out and discuss my situation. It will involve a 30 day stay in the hospital and then staying close to the hospital. Thankfully, I have family in the area that we can stay with.
I am very positive and feeling really good.
It is so helpful to have people like you who reach out with their positive experiences. Thank you!

@alive. I am so happy to hear that you are doing well with a few hiccups. 8.5 years is awesome! My brain keeps saying get this done, get this done but every once in a while I think what if it doesn’t work. I guess that I’m only human.
I’m sure after I have a discussion with the transplant team I will feel a lot better about what comes next.
Thank you for sharing and God bless you!

I just returned to work in person, and besides my short hair, you would never know i walked through a transplant. I got to work from home for the year, so I feel blessed for that opportunity. Lori and all of us are here for you on this journey. Real people who have walked this road ourselves.