← Return to MDS (myelodysplastic syndrome): When to start treatment?

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@girlmidget

My husband was diagnosed with MDS in October, 2023. It is high risk; close to AML. His has the IDH1 gene mutation. He has extremely low red & white blood cells as well as platelets. He has had many red blood and platelet infusions, as well as bone marrow biopsies. He takes Vidaza chemo shots (usually one week per month) as well as Tibsovo daily. Labs twice a week, so he is a pin cushion. He is 73 years old, was very athletic before the disease, and had retired for 8 months before diagnosis. His metabolic numbers are beautiful, but his differential is horrible. He is afraid of stem cell transplant because of the unsuccessful stories he has heard. I wonder if this is what he can expect of his life without it. Will it be a series of chemo and pills? He is confined to the house and is inactive due to no energy. He has many friends and support from church, but is this what we can expect since there really is no cure other than a miracle from God?

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Replies to "My husband was diagnosed with MDS in October, 2023. It is high risk; close to AML...."

Hi @girlmidget. Welcome to Connect! You’ve come to the right place to be able to speak first hand with those of us who have had AML or MDS and required a bone marrow/stem cell transplant. Your husband, from my experience, with his age and overall good health except for differential blood numbers, could be a candidate for transplant. Obviously the final decision is with your husband, you and his doctor.

I had my SCT almost 6 years ago for high risk AML at the age of 65. I’m now 71, cancer free and living an amazing 2nd life. I travel, exercise, have excellent energy levels and very minimal issues related to the SCT. My life, I’d say, 98% normal?? But then again, I’m also 71 so I can’t expect to always feel like I’m in my 20s.

I’d like to introduce you and your husband to @katgob, @dwolden @mary612 @alive @edb1123 @kt2013 @jenmkr63 @jrwilli1 @tkidd51 and a growing list of successful BMT/SCT for our blood cancers.

To answer your question, at this time, a bone marrow transplant remains the only potential cure for MDS/AML. I’m not sure where your husband is getting his information but there are more success stories than failures. I’d encourage him to stay off Dr Google.
If he elects not to go with the transplant and his disease keeps progressing, from my own experience with advanced AML, there will be more reliance on transfusions and medications. With that comes weakness and fatigue. I believe he’s experiencing some of that already so basically it is more of the same.
With a transplant he’ll have a few early months immediately following the transplant, of fatigue, possibly nausea. But slowly and steadily blood numbers start building and life takes on more normalcy. Many of us, like myself, no longer have transfusions or even take any meds when we’re past a certain recovery point. So I hope that your husband will have a long talk with his doctors, you and your family about possibly going ahead with the transplant. The process is not a walk on the beach by any means and as with any medical procedure there are risks, but it is also an opportunity for a 2nd chance at a healthy life.
Do you live near where the transplant center?

My transplant for AML was 8.5 years ago. My transplant was the miracle I was praying for. I was only a few days from dying when I was diagnosed. Getting a transplant is a personal decision and there is a risk of complications and dying. However, there is also a chance for a cure.

When I was preparing for my transplant, I read all about the statistics. For me, it was I was either going to live or die. I took the chance and proceeded to get a transplant. I have no regrets!

I recommend that your husband shares his hesitations with his doctor and the social worker on the transplant team. It will be also helpful to talk to the transplant recipients and hear about their experiences.

Wishing your husband and you all the best as you make that difficult decision!

Good afternoon! I was diagnosed with AML with 5 mutations at the age of 51 in April 2023 and went through a BMT (donor anonymous) in September 2023. I’m doing really good. I promise it’s not an easy journey, but it’s a 2nd chance at life that I definitely don’t take for granted. I’m so so blessed and thankful for my donor, family/friends plus Mayo Clinic for saving my life. Let’s not forget my Heavenly Father had his hands on me the whole way.
One suggestion, DON’T ASK DR. GOOGLE! I did that at first and it took me down a lot of rabbit holes.

Your husbands medical journey sounds exactly like my husbands. Weak, fatigued, and worried about the outcome. I pray for peace of mind. Always trusting God, we have to believe he is the healer of all. Prays for you and your husband.