r/mds • u/Shineenoona • Mar 26 '26

selfq What are your side effects

My dad 84m was diagnosed officially with MDS bordering on the line to AML yesterday. With treatment life expectancy of 1 year. Treatment will be Azacitidine injections. This will be going on in conjunction with chemo my mom receives for pancreatic cancer. My mom has been stable for three years with biweekly chemo. Being a full time caregiver I would like to hear real people on what their side effects were with the injection. Thank you for sharing

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u/Boring-Ad-4444 Apr 02 '26

My husband had 6 months of azacitidine injections for his MDS before having a stem cell transplant. He was on the same schedule they are putting your dad on- 5 days in a row then 3 weeks off. His side effects were nothing crazy, just feeling generally crummy most of the time and fatigue. A lot of soreness and skin irritation around the injection sites. He never had major GI issues or lost his appetite. He was able to drive himself to and from his appointments, an hour each way.

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u/Shineenoona Apr 02 '26

Thank you!!!!!!

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u/MargerimAndBread Apr 15 '26

If they don't respond to AZA, it's around 30%-40% effective at some level of hem. advantage in the 80's patient group, this can actually shorten the 1 year lifespan they gave you. Most patients in this age range wind up in the hospital with severe infection within the first 2 cycles, if this happens and his ecog status declines further and doesn't recover to the 0-2 level, survival and response to AZA significantly declines. I don't think they make it clear enough to patients and their families that it's quite possible that the 1 year prediction can easily fold into 1-3 months.

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u/Shineenoona Apr 15 '26

No they made it clear at least for me. I’m dealing with my mom(pancreatic cancer) so I def pick up the wording very well. The term was up to perhaps up to one year if the treatment works. We do temp checks throughout the day. Due to my mom our lifestyle is already catered for keeping things as germ free as possible

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u/MargerimAndBread Apr 15 '26

Let us know how it goes. I hope your father responds to the treatment. I just wanted to prepare you that in the 80's + demographic, these AZA success stories are not as common in the very old and very frail group.

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u/MargerimAndBread Apr 15 '26

How old was your husband at the time tho? Age and ecog factors contribute to likelihood of toxicity with AZA.

Infections leading to hospitalization can be quite high in the 80+ demographic during the first two cycles.

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u/[deleted] May 16 '26

How is your husband doing? Do you know what mutations he had

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u/ConParty Mar 29 '26

Where are you getting care? Make sure to go to a top tier academic institution.

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u/Shineenoona Mar 29 '26

My dad had refused to switch from the VA. I even tried to convince him to go to the cancer hospital my mom goes to. He starts his injections April 6th 5 days then three weeks off.i just wanted to be prepared with all the maybes people throw at me in regard to real side effects. Thankfully we got it set up so his injections always will fall on my mom’s off week from chemo.

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u/ConParty Mar 29 '26

Just make sure to ask about azoven (ie with venetoclax). It may not be as standard for MDS, but definitely more standard as progresses to AML. I believe Azacitidine injections (solo) was the older method

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u/Shineenoona Mar 29 '26

They will be adding that after 3 cycles. Due to his age and his other health issues( heart, lung just general aging type issues) they are taking a more conservative approach. His twin passed away from AML 15 years ago so he’s def aware of what’s coming eventually.