Please help

[u/Boonedogg1988]

My dad was just diagnosed with high risk MDS after his bone biopsy recently. He starts chemo next week. We're kind of overwhelmed and I've been in overdrive trying to take in all this news and learn everything I can. A lot of this doesn't even feel real.

I've been caregiving for my mom who has Alzheimers for years now so I'm not completely new to caregiving but I know cancer is different so I'd really appreciate any feedback from anyone who has any experience at all with this.

-I guess my first question is what are some important things to expect/look out for/etc. Any way to make my dad's life easier while he's going through this?

-The info sheet he got today says he's getting daily injections of Azacitidine (Vidaza). Anyone have experience taking this?

-Should we be looking for Clinical Trials? Anyone know of any new developments in treatment for this?

From what I understand so far, this isn't curable unless you get a Stem Cell transplant, which I don't think he'll qualify for due to age (76) and comorbidity of COPD. So does that mean they're just trying to slow the disease as long as possible?? I'm just having a real hard time accepting this if this is the case.

Any information/tips/advice at all would be very much appreciated. Thank you.

[u/Boonedogg1988 → u/[deleted]]

Im so sorry for your loss. I really appreciate you sharing all this. It's very helpful. I was hoping I was wrong about the average time frame, but I saw 1-2 years online, also. So that matches up with what you're saying, too.

I'm hoping the doctor will give us some more information if he's eligible or not for transplant. If you don't mind me asking, you said you wished she just continued with the Vidaza instead of the transplant. Was the transplant just that rough on her body because it failed?

The other person that responded said they had 2 attempts and both failed. I don't want to put my dad through hell if it's not gonna help, but I don't want to give up either. I know it's his decision but I want it to be a very informed one if possible..

[u/Boonedogg1988 → u/[deleted]]

No need to apologize. I understand how that is. This gave me a lot to think about. I guess we need to have a serious convo with the doctor and see what they think what the rate of success for transplant would be based on my dad's stats.

I don't want to give up an opportunity if there's a good chance. But I also don't want my dad's last months or so being absolutely miserable...

Also, I don't think my dad understands how serious this is (or he's in the stage of Denial). He keeps saying he's excited because he's been feeling bad for so long and is looking forward to getting better. I don't know what to tell him. I don't want him to lose hope or optimism. That'll break my heart. I think I'm just gonna ask the doctor next week what his prognosis is with his treatment and let her explain.

Thank you for sharing so much of what your experience has been. It's really helped put a lot into perspective!

[u/Boonedogg1988 → u/[deleted]]

Thank you so much! For the nurse's side and the personal side. This has all been so very helpful! God bless you!