MDS (myelodysplastic syndrome): When to start treatment?

Dear Gail,
I am so happy you had a positive report. I know how wonderful it feels to leave the doctor's office with a wait see prognosis. I thank God every day for the gift of another healthy day together. This is a journey that I never thought I would be on, and I thank you so much for your support.
My prayers and thoughts are with you and your family.
Sincerely,
Sherri

My husband was diagnosed with MDS 6 months ago. He has had 2 rounds of chemo treatment. His oncologist wants his platelet counts at 20 or above. R has blood drawn every M,W,F and every time he has needed platelet transfusions and sometimes red blood transfusions. R is tired most of the time but he has been advised not to take iron supplements. He had a stem cell transplant 5 years ago when he had myeloma. He is 78. Is there any natural way to increase his platelet levels and get his bone marrow working again?

Gosh, sorry that R has been through so much. I don't have any answers for you. It's more advanced than where we're at. Hopefully someone with similar situations can help. It's hard to know what to do, each time you're faced with new symptoms, and problems. One thing we can do is pray that R can get his platelets up and that he can start feeling better soon. Hang in there! 🙏❤️

Sherri,
Thanks! It means alot. Definitely some good days and then the harder days. We just have to keep on going and doing the best we can.
Hugs!
Gail

I'm 80 with 5 mutated chromosome s. Diagnosed initially with JAK2 rhen Runx1 etc. MDS/AML . It's been a journey. Similar transfusion issues.
To the point...increasing platelets naturally can be found on YouTube, yes you can help but the primary treatment is your oncologist plan. No one says this but if you are overweight loose some of it.
And keep asking questions. Good luck.

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?

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?

Hi! Welcome to our support team. I hope you find words and thoughts in these discussions that lift you and your husband up and support you on this journey.
I am going into my 12th year of long-term remission, following diagnosis of AML with peripheral stem cell transplant from my sister. The decision to accept transplant or not is a very personal one. Like every snowflake, each of us is an individual and brings our own concerns, worries, hopes, and dreams to these very important decisions. For me, the most important part was to gather as much good information as I could, discuss it with my family in an open, transparent fashion, and then to make a decision based in my faith. The journey was challenging, but doable.
Whatever you and your husband decide, will be the right decision.
Please know that I will lift you up in thought and prayer.

I look at life and believe we have choices. We can choose to live it fully, or exist as status quo. It's hard living with a blood disease. Your husband sound like he's regressed, since he's on a pretty serious treatment plan. I feel bad for you both. It's hard when you can't see the benefits like you did in his past. I can't speak on experiences with BMT, or SCT. We have not traveled that road yet. When that time comes, we'll look to everyone here, who's been there. There are a lot of great people on connect who can give you solid advice from personal experiences. I pray that you and your husband can look at the options, discuss them with your medical experts and make a decision that allows him to live his best life. He's lucky to have you. Best wishes as you navigate the days and God willing many years ahead. 🙏

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!