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@loribmt

Hi @alohasteve. Sorry to hear about your newest adventure in the world of blood cancers. I didn’t have your TP53 mutation but 3 others which made treating my AML difficult. I underwent an allogenic (donor cells) bone marrow transplant 4 years ago, also at the age of 65 and happy to report I’m in a durable remission and feeling as though nothing ever happened. So this is all doable…not a day at the beach but definitely worth the effort.

I’m happy to talk transplant with you. You’re wondering about the preconditioning. For my pre-conditioning I had 5 days of Fludarabine, concurrent with Melphalan the last 2 days. Because I went into the transplant ‘clean’ with a chemo induced remission my doctor opted for no radiation. I had a lumbar puncture to make sure my spinal fluid was free from cancer cells and bone marrow biopsies came back clean 2 months in a row. So he felt comfortable forgoing the radiation.

We all have cancerous cells in our body. Every day our immune system nabs them before anything happens. When we have a mutation, it can trick the immune system into no longer recognizing the cancerous cells so they’re allowed to proliferate. There are some mutated cells which can morph, elude chemo and lie dormant, hiding out for a while. Months after chemo or BMT, they can resurface. The goal of our newly implanted immune system is to recognize these invaders as diseased and do what our old systems could no longer do…exterminate them!
So that last push with Malphalan and/or radiation helps to eliminate any potential interlopers to reduce a comeback. It’s no guarantee but it’s a little more of belts and suspenders.
Side effects whether you have just the fludarabine or combination of both will be similar. Extreme fatigue, nausea, hair loss, gut/intestinal issues, mouth sores. But these pass. The first 2-3 weeks are generally the worst when blood numbers drop to record lows during the nadir period or neutropenic state. Most patients feel physically and mentally exhausted until engraftment of the new cells. Then, as the WBC starts increasing you’ll being to feel much better with daily progression of strength and stamina.

Honestly, any of our chemo meds or radiation can possibly cause secondary issues years down the road. But the gift is they buy us precious time and an opportunity for a second chance at life. If I hadn’t had my transplant it is a certainty that I would no longer be here.

So as long as you’re comfortable with your transplant team, you’ll learn to trust them and your doctor to help guide you through this process. Having a larger top hospital behind you will help insure that you’ll be in the best experienced hands. There are a number of us in the forum who have undergone the process of a Allogenic transplant and are happy to use our experiences to help you through yours.
Do you have any specific questions? Has a donor been found for you yet?

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Replies to "Hi @alohasteve. Sorry to hear about your newest adventure in the world of blood cancers. I..."

Lori, Thank you so much for taking the time to reply. I have been looking at Mayo Clinic Connect for a couple months, but had never posted anything, until this week. I've seen a number of your posts on BMT/SCT. Your words are encouraging and helpful to many, including me.

The great news is that I have a designated donor with a 12/12 match. Apparently, the donor had a scheduling conflict, so my SCT has been pushed out another month. My disease hasn't progressed to AML, so the doctor isn't concerned with the additional month.

Thanks for the offer to reach out, should I have additional questions. I just may take you up on that. Carpe Diem! Steve

Lori,
I have seen many posts from you, all seem to be so uplifting. My husband was recently diagnosed (2/2024), with low risk MDS. They have indicated that his was caused by previous cancer treatment he received in 2016 for base of tongue cancer. Do you know of any others on this site who have similar diagnosis- therapy related. He has 7q deletion. so hard to find others in the same boat. thank you.