What are you doing to keep AML from relapse after transplant?

Good morning @g4c, Welcome to Connect. Before taking any supplements or radically changing your diet after a BMT, it is advisable to speak with your transplant team. Depending on where you are in the recovery process, some supplements and foods can significantly interfere with medications you’re taking.
Having had AML and a BMT myself, I know that there’s always the thought of the specter over the shoulder and we want to do everything in our power to not require a repeat or to have a relapse of the disease. Some of the mutations which were the drivers for the AML can impact the success but for the most part, these transplants are highly successful.

I’ll be celebrating my 6th re-birthday in June this year. While I’m very mindful of anything I put into or on my body, I really haven’t altered my diet very much and still load up daily on fresh fruits, veggies, healthy proteins, grains and oils, while avoiding sugar and processed foods, etc.. I absolutely understand your desire to do whatever you can to promote the best possible scenario for continued health after your transplant. I’ll be following along with this discussion to see what fellow Chimeras have with diet and potential supplements. This is a great question!

We have a growing number of members who have had BMT for AML, MDS and other conditions requiring the transplant. If you’d like to share your story I love for you to join us here:

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
How long ago was your transplant? Was your AML difficult to reach remission? Have your chimerism tests remained stable?

I was diagnosed with AML nine years ago and had my transplant half a year later. Both the diagnosis and the transplant were wrapped in so much uncertainty and so many things were completely out of my control.

Not relapsing after the transplant depends on the engraftment of the donor’s bone marrow. The chemo prep right before the transplant creates the best possible environment for engraftment and the medication keeps the transplant in check.

Sometimes transplants fail. That’s not because transplant recipient did anything wrong. As far as I understand how the SCT works, I think good nutritious diet and exercise helps with the recovery.

It’s important to follow the directions of your transplant team and ask them questions before you start taking any additional supplements or diets. They will make sure that there won’t be any interaction with your medication and that alternative treatment won’t do more harm than good.

I have been in complete remission since my transplant and wish you the same!

I can’t tell you how important it is to hear from survivors because looking at the statistics is just so scary. My induction was successful and the transplant has engrafted. Had a bout of skin GVHD but no more. Coming up on my 2 year post transplant check. Blood counts continue to improve. Workout hiking or with weights 6 days a week, no sugar, meat, dairy. Not on any meds for months now.

Thank you for your response. What an inspiration you are having 9 years post transplant and still going. I didn’t know that was even possible. Does the fear of relapse ever go away? I have been doing therapy with a hypnotist to stay positive and it has helped me make good mental and physical chemistry. Probably 6 months now off Tacrolimus. 2 years check in April.

It gets better with every year! I think it’s important to try to get your mind off AML.

During my first two years I immersed myself reading articles about AML, transplant and different clinical trials. I also searched for stories on line of transplant patients. Some of them were encouraging and others were not.

My faith in God played a huge part in how I viewed life and the uncertainties I was facing. I found that praying and telling God about my fears gave me peace. I had no control over what new health challenges were ahead of me, but God is in control and I trusted him.

I realized that I needed to focus on something more positive. I started exercising and looking for a job to get back into my line of work. After over 100 applications I was hired by a university on the West Coast. So, I moved there from Michigan. I have been able to rebuild my life, one step at a time.

Both my body and my life look very different from before my diagnosis, but I am content with it.

I recommend that you focus on something you are passionate about or develop new interests. You will find that a lot more fulfilling than letting your life be ruled by fear.

I don’t know what tomorrow will bring, but I am making the most of it today!

Great advice thank you. I’m currently just like you were reading everything I can about AML. I’m trying to have a parallel path where I focus on the now and enjoying/appreciating this time

Well, you came to the right place to get first hand accounting from fellow transplant friends. It can be incredibly beneficial to be able to speak with people who have a walked that walk! I didn’t have a mentor or anyone whom I could talk with who had AML, let alone a bone marrow transplant. Trying to find info out on the internet filled me with terror! So, that’s why I’m here, along with other members to help guide anyone else walking along this path with honest, straight answers.

Try not to get caught up in statistics…if I relied on those for my survival, I wouldn’t be alive today! LOL. The odds weren’t in my favor with AML. But the transplant changed all of that!
And if it’s any consolation for you coming up on 2 years…here’s one statistic you can relish! I was told by my transplant team at Mayo and also my hematologist locally, that statistically, if a BMT patient makes it past 22 months without a relapse the chance of that happening drop appreciably. So, you are now at the 24 month point and it should be smooth sailing forward!

Are you on a vegan diet? What are you doing for protein?

Thank you for your comments, seriously they mean a lot. Yes a vegan diet, been vegetarian or vegan for almost 34 years. Protein is nuts, seeds, tofu, tempeh, soy milk, beans, lentils. One of my worries that I don’t hear mentioned is what mutations these AML BMT patients have, their age, or if their transplant was an allotransplant (non relative donor) I had a really strong match allo donor but had a FLT3 mutation.

@g4c I hope after reading some of the comments by fellow members who have had BMT for AML or MDS, you’ll begin having more confidence in the success of your transplant.
As I mentioned before, after 22 months with no relapse, statistically, the likelihood of a relapse diminishes. If the sleeper cells that have gone dormant during treatment haven’t emerged in that 22 month period they most likely won’t resurface or they’ve been eradicated by the new immune system. If there’s no relapse by 5 years, it is considered cured. I was told that I now have a normal life expectancy again.

I’m almost 6 years post and quite frankly, if I wasn’t on Connect every day as a mentor discussing BMT/SCT or AML with members, I know there would be weeks going by without my even thinking about the transplant or having had AML. The only thing that concerns me now is the fact I’m considered immunocompromised even though I feel that I’m in excellent physical health. I’m 71, still rack up 8+ miles walking daily, exercise, lift weights and travel. Other than sporadic small flares of oral gvhd I’m 99% back to normal.
I was 65 at the time of my AML diagnosis. That 6 year anniversary is coming up in a couple of weeks. My transplant was 4 months later, in June, after 1 induction and 2 consolidations. I had 3 mutations. Here’s my diagnosis:
FLT3 ITD positive (low alleleic ratio), NPM1 wild type, IDH2 mutated, s/p an MUD allogeneic PBSCT
So, you and I shared at least one mutation…and I also had a MUD (matched-unrelated donor)

I have the honor of mentoring patients at our local clinic and also through Mayo Connect. Occaisonally, I have the absolute pleasure of meeting some of these people in person. A few years ago, I was so excited to meet a young woman and her family with whom I’d been communicating in advance of Sky’s transplant. We still chat from time to time. 3 years out and she’s doing fabulous…just starting grad school! You might enjoy reading about our shared journey.
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/
I really want you to enjoy this 2nd life that you’ve been given without worrying about what ifs. From what I’m reading, you’re doing everything right! You were healthy before AML and you’re healthy now. You no longer have AML so you can move forward with your life without focusing on its return.
We’re all about hope here in Connect. So I’m hoping that you’ll breathe a little easier tonight. ☺️

Thank you so so much!! You have given me a tangible beacon of hope, as good as any medicine. My wife and I both had tears of joy after reading your words. I’m going to print it out and put it up on my motivation board. I had 100 days of skin GVHD with multiple rounds of steroids and 19 rounds of photopheresis to calm my transplant (I nicknamed the “piranha”) so I’m hoping he was good at the graft versus leukemia work. Grateful every day. Blessings to all on this journey.