@asarnesejr With what you’ve just told me about your visit with your potential stem cell transplant team, quite frankly I’d suggest getting another BMT team! The first red flag is they only do 150 SCTs annually. That’s not much experience on their part to handle some of the potential issues of transplant. You also need a facility where they have a deep bench of specialists if the need arises.

I did not get a gloom and doom speech from my team at Mayo. It was a solid plan, with the risks vs rewards delineated. I knew it wasn’t all sunshine and lollipops but my team sure didn’t paint the picture you got!
I had tests to make sure my body was capable of handling the conditioning and rigors of transplant with heart, lung, organ testing. I had mental assessments to make sure I was emotionally and psychologically fit to cope with changes. And tons of classes and meetings to know how to avoid infections, food choices during recovery and how to stay fit and healthy. I went in totally prepared and ready to take on my new life.

The survival rate for SCTs are much higher than 50% and yes, there is the potential for what’s called Graft Vs Host Disease (GVHD). But larger hospitals where they do upwards of 650 SCTs annual, have been using a newer protocol of drugs which can help prevent the worst of the gvhd manifestations. For most people there are minor issues and there are some people who develop chronic gvhd, sometimes serious. But generally there are treatments to ease the complications. Over time, typically conditions begin to settle down.

So yes, of course, there is always a risk of mortality or gvhd. But any of us could get hit by a bus tomorrow. Life holds no guarantees. That’s why having a bone marrow transplant isn’t something to be taken lightly. For most of us, the transplant comes at a time when we have no other option in front of us! If I hadn’t received the transplant 7 years ago, I would have been pushing up daisies from the underside a good 6 years already. So for me I jumped at the opportunity. It was a 2nd chance at life.

I really think that this discussion about having an SCT is very premature in your journey. You were diagnosed with low grade MDS with a mutation that deems it very unlikely to progress to a more aggressive form of cancer.
Plus, you haven’t even started any treatment yet that I’m aware of. There are many options available for MDS patients to help slow the progression or to help mitigate symptoms. Transplant can be arduous so those other options should be exhausted first before heading to an SCT. And often patients can receive those treatments for years!

If I remember correctly, you’re only 61 years of age. You’re not in treatment and low risk. For me, this is a no brainer. Just go out and live your life and stop focusing on a bone marrow transplant that may not even be necessary. You are not the disease. ☺️