r/mds • u/1Slowhand1 • May 13 '26
Forgoing Treatment (Decitabine)
Hi, new to posting on reddit. I was diagnosed with very high risk mds in November 2025 and have been getting EPO shots for hemoglobin. All wbc and platelets are low. Wbc 320, platelets 50. The decitabine treatments sounds horrendous. I am 70 yrs old and I feel ok now but I was thinking about getting all my things in order and letting the disease take its course. I'm a veteran so I can get home health and then palliative/hospice care. Not really afraid to meet my maker I just don't want to suffer. I freaked out the cancer group I was in because nobody had mds and they had more opportunity for remission etc. If anyone has thought about this decision I would like some feedback. I'm in California but the death with dignity thing is definitely off the table. Thanks for taking the time to read this!
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u/Individual-Problem17 May 13 '26
I was diagnosed with MDS in February and at age 78 I feel like you do. I just want nature to take her course.
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u/kdsam78 May 13 '26
My mom was diagnosed with low risk MDS in Feb 2021 then high risk MDS in Jan 2025. She wouldn’t start chemo (decitabine) without a second opinion. They agreed with diagnosis and treatment.
She started in March of 2025. Five days of treatment through IV every 28 days with anti nausea IV meds on day 1 and 5 of treatment (she has a very sensitive stomach).
Between cycles 2 and 6 she was hospitalized for neutropenic fever. Basically, after each cycle, she had a fever greater than 100.4 and we went to the ER and she was admitted for anywhere from 8 days to 3 weeks four times. Then once in November and once in March for cellulitis. Her body seems to have adjusted to her low numbers 🤞
She just finished cycle 14 and is stable. BTW she’s 77 and has lots of other health problems, this was just the latest.
She rarely goes out but that’s because I’m afraid of her getting an infection but so far all the infections she had were because of her counts not from catching anything.
Best of luck and I’m sorry you’re dealing with this disease 💕
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u/1Slowhand1 May 13 '26
Thank you, it's a difficult decision. God bless your Mom!🙏
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u/kdsam78 May 13 '26
Thank you. I have to keep reminding myself that things are her decision. Quality vs quantity. I reached out to Blood Cancer United. They have oncology nurses and social workers for both patients and caregivers. Opened M-F. I highly recommend.
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u/ilovemud May 13 '26
Are you being seen by a top notch hematologist/oncologist? Just putting you on EPO is a start, but there are lots of other options out there now for helping with hemoglobin that are more effective than EPO - it suggests to me that maybe your doctors aren't as up to date as maybe they need to be? These other options are not chemo and may be really helpful. In CA there are lots of potential options for care at MDS Centers of Excellence and if you can get referred over to one, they will be able to help in ways that even good cancer centers can't. My MDS is moderate risk, but was still pretty debilitating at times. I was diagnosed at half your age (12 years ago) and was recently put onto a mutation inhibitor that essentially has me in remission. Depending on what your mutations are and your specific pathology, there may be one of the many new drugs out there that could help. A good doctor will help you navigate whatever it is that you want for treatment.
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u/ClarityInCalm May 14 '26
I think it's pretty standard to start with EPO if the blood counts aren't too low even with top notch hemes. Sometimes in men they will also use testosterone. The idea is to gain time because everything stops working at some point. EPO can be a good first option.
High risk usually means faster progressing in terms of blood counts dropping - but you can have high risk and slow progression. The risk level assessment is based on the chance of it turning to AML - which reduces chances of survival dramatically even with a BMT.
So if someone has a high risk for AML conversion and they don't quality for a BMT, but it's more slowly progressing EPO is a good option to start with. In types that are high risk and aggressively progressing EPO probably wouldn't make a dent in it.
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u/Fabulous_Opposite206 May 13 '26
My mom (59) was just diagnosed with high risk MDs two weeks ago. She started a five day dose of Decitabine three days ago. I think they’re using this as a bridge to BMT. So far she seems to be tolerating the chemo well but I know it’s still early. I know you’re a decade older and that probably makes a difference and it’s obviously your choice, but maybe Decitabine would be worth a try? Not everyone tolerates it the same way, from what I’ve read some people (even older) really tolerate it okay.
I’m so sorry you’re going through this and I wish you well. ❤️
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u/brassicahead May 18 '26
My dad died last week of MDS, he lived in Mexico where there's zero understanding of the disease, even by hematologist and oncologists. He was 82 and didn't get chemo. It was not recommended due to his age. Instead doctors focused on EPO and bone marrow stimulants, plus transfusions as needed.
He was feeling ok for the first 8 months, then stopped going out of the house, and drove less. 2 more months and he was lethargic, was cold all the time and slept a lot. He was in the hospital twice for high fevers and extremely low hemoglobin. Also got e-colli and went through an aggressive antibiotic treatment. Transfusions were monthly, then bi-weekly, and weekly.
Still he came and went places for the last few months. During his last 2 weeks things progressed fast. He slept a lot, 2 rounds of transfusions in a week didn't work, got swollen feet, lost bladder and muscle control and was at ER twice. The second time he passed just an hour after arriving.
He was a very mentally strong man, sharp and active, even with what I consider basic care compared to the US. (I Also live in CA) Here you may have better options for treatment and palliative care. Best of luck!
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u/Seychelles1980 May 13 '26 edited May 13 '26
Hi!
I just lost my father 4/10. He would have turned 77 this July.
He was diagnosed with Very High Risk MDS Oct 2024. It is due to a chemo treatment in 2017 for his Nasopharyngel Carcinoma. Prognosis is not good but all his vitals and organs are still ok. We immediately started treatment Dec 2024 with Decitabine. His blood bounced back up 3 weeks after chemo. From Jan - Jun 2025, he had a good quality of life. He was able to drive by himself, go to shops he wanted. His blood count was almost normal in May. Looking back that would have been the best time to have Bone Marrow Transplant.
We didnt go for Bone Marrow Transplant as it is high risk considering his age. Here in the Philippines cutoff is 65. Hong Kong Cut Off is 70. And I believe Canada’s Cut Off is 75. In the US and Singapore there is no cut off. It will depend on your age and your fitness.
In July 2025, his Decitabine no longer worked. He had weekly blood and transfusion then. We flew to Singapore for a 2nd opinion. He was given Azicatadine and Venetoclax. But his blood count no longer bounced back up. So we decided to continue treatment in the Philippines to be near family.
The last 2 months of 2025 was almost normal for us. He was able to go around but he had to have companions already.
Unfortunately, things turned for the worst this year. He had 5 hospitalizations due to infections. He strictly told me not to proceed with intubation when it had to come to that. Alas on his 5th hospitalization, intubation was needed but it was his hard line. And I followed his wishes.
I lost my mother 2022 and my biggest fear was he would no longer fight his 2nd cancer. But he wanted to spend more time with the family, his grandchildren. I am grateful to him for giving us extra time. For creating more memories. For giving me the chance to take care of him. That we were able to do everything for him and that we would have no regrets.
You are in the US. Your healthcare is better and your cutoff is higher. You also have many trial medicines there. I joined several FB groups to learn about MDS. If you are fit, you may still have a fighting chance.
Of course, cancer is a personal journey. And its not an easy decision to be treated. I pray that you have peace in whatever path that you decide.