New MDS diagnosis, I welcome advice

[Judith Barnes]

Hello! I’m 75 years old. In 2018 I underwent treatment for inflammatory breast cancer, BRCA1 positive. In 2003 I’d been treated for a different (yet similar) breast cancer with chemo, lumpectomy, radiation. Now I find out that my treatment caused a few mutations in some bone marrow cells and I have high risk (secondary) MDS. A bone biopsy (to explain my decrease in platelets) revealed mutations in DNMT3A, SF3B1, and TP53. My FISH report specified deletion 5q and trisomy 8. Good news, NO EXCESS BLASTS!

I am in the UCLA system and they are one of several centers of excellence nearby. The week after next I will begin treatment with Azacitidine. My husband will take me for the first treatment at least, as I don’t know how it will affect me. I found a useful article that recommended taking Ondansetron prophylactically, which I will do, so I no longer have that question. But I welcome any additional advice you experienced participants can provide.

[Kathy Stermer]

The ondansetron or zofran should be part of your treatment plan. I find it is so constipating for me I can take it a few hours after I get my Vidaza to last me into evening as it’s only every 8 hours and I load up on Senna 4 tabs daily a few days before and after treatment. As everyone responds differently you’ll have to see what works best for you. Hopefully you’ll have a good response.

[Judith Barnes]

Thanks for the Senna tip. I still have Miralax from my 2018 opioid constipation adventure, so I’ll start with that. How long have you been getting Vidaza?

[Kathy Stermer]

Just finishing up my 5th cycle. So far nothing happening but going another round and see where we’re at. Might need another biopsy but last 3 done for lack of progress shoes disease stable. My body just doesn’t want to cooperate.

[Judith Barnes]

Hang in there! At least you’re stable. But I see how you could be a bit discouraged after five cycles.

[ppn2018]

Judith Barnes:
[Perhaps there is some confusion with the title on your post and the contents.
See my reply about Lisinopril and Amlodipine.
As for MDS-MLD, I am now on “Wait and Monitor” regimen.
My advice: BE YOUR OWN BEST ADVOCATE!Ti WILL BE
AT THE MDS-fOUNDATION MEETING IN NASHVILLE ON THURSDAY.
ppn

[Judith Barnes]

Kathy, I’d love to hear more about your CBD products but haven’t figured out how to private message you. I’ve used a CBD cream for my itchy/burny belly but suspect it might be the peppermint oil that has a cooling effect. I’ve used aloe Vera gel more frequently. I’m also interested in sleep products.

Judy
judybarnes44@gmail.com

[Author]

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