information help needed

[Dee Dee Morreo]

My husband was diagnosed with MDS in October of 2022. Started with the pill form of Chemo after Christmas. We did that for about 8 months. We are now doing the stomach shots chemo and are getting transfusions last one was the end of March, not sure he will be able to get it next week with his counts so low. Last week he got 3 units of platelets(2 on Monday 1 on Friday) and blood on Friday. After those transfusions his results:
WC: 0.4
RBC 2.66
Hemoglobin 8.3
Platelets 15
Unfortunatly my husband is hoping for a miracle, and doesn’t want the bad news from the Dr. So I’m getting no info.
I on the other hand do not want to keep my head in the sand, If you have any advice for me I’d really appreciate it. I don’t know how close the end may be. Last year on July25th we were told 6 months to a year.
I know he wouldn’t want hospice called, but i just don’t know what to expect. I’m scared!!
Thanks for any info or ideas,
DD

[Janet]

DD: prayers to you and your husband. Since he was told 6 -12 months, last July, he likely has a high risk MDS. Some patients don’t want to focus on negative information. There are booklets available on MDS-foundation.org that can give you more information. Would your husband allow you to speak to his oncologist? I think you are correct about not getting chemo. I am on a pause right now waiting for platelets and wbc to go back up. Your husband’s platelets are much lower than mine were. The Dr’s will probably continue with more platelets at least. I know all the medications eventually stop working. Then we are transfusion dependent. Perhaps some of the caregivers here who have been through this can help you better. Search the message forums for them. I am pretty sure they can help you!

[bexar2120]

Hello Ms. Dee Dee, I am rather surprised that the physician gave a number as far as life expectancy. When I asked my oncologist at Houston Med Ctr – Mays Cancer Ctr the response was ” hard to determine; disease is different in every patient’. I was there for two separate clinical trials and unfortunately there was no progress. We decided time to come home and let disease take its’ course.
I gather from your post that you are not in the room with your husband and oncologist when medical diagnosis/information is being conveyed. MS. Janet’s post is spot on about site’s to inform yourself about his disease.
Myself, I was/am MDS TP53 that progressed to AML TP53 (Oct2023). We have decided to continue supportive care ( blood/platelet transfusions as necessary ) and eventually to Hospice when the time arises. My only chemo therapy is Hydroxy Urea.
I also urge you and your husband to prepare your estate. One more task to attend to when dealing with this disease.

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