Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Platelets Unstable

This topic has 3 replies, 1 voice, and was last updated 19 years ago by JulieMarie.

Viewing 4 posts - 1 through 4 (of 4 total)

Author

Posts
April 19, 2005 at 2:35 pm #5601

JulieMarie
Member

My mom just finished her last (hopefully) round of Vidaza over the weekend. For the past week she’s been running a low grade fever and well platelets before she started this round were low, and now they are high. Does anyone have any insite on this? She seems to be on a rollercoaster with her emotions. Friday night good, but then with all the hassel at the hospital on Saturday she’s back down. Anyone have suggestions on how to get her into a good mood and have a positive outlook on things?

April 19, 2005 at 6:32 pm #5602

Cherbear
Member

JulieMarie,
I’m not very knowledgeable about Vidaza, but as far as the platelets rising and falling, that happened to me in November. I’d been steady at around 30,000, and then I developed pneumonia and they jumped to 106,000, only to fall back down to the 30’s again within a week. My hematologist thought the platelets were acting like white blood cells do when one has an infection. I had the high hopes when the platelets jumped up that it would keep getting better, but they are still in the 30’s. It is an emotional roller coaster for sure and I understand how she must feel. My prayers are with you and your mom.
Much Hope,
Cheryl

April 20, 2005 at 12:52 pm #5603

Terri
Member

Julie, How come this is your Mom’s last round, how many did you do? Bob has not experienced the high and lows with the plts they are consistant always between the 50- 70’s. He will be starting the 6th round of Vidaza end of May. This is his second go around with it, if you have seen any of my other post Doctor is trying to keep him in a mtc stage. It will not cure him I Doubt, but if it keeps the MDS at bay where he does not progress to Leukemia and he doesn’t need Tx we are happy. His counts are pretty stable, not all normal
We do have Bob on a lot of Vitamins and Supplements which to this day I think has been helping He started them in Nov of 2003, he was Diag Aug 2003 and I do believe they are helping that he is not getting any flu, colds, no fevers etc etc.

April 20, 2005 at 2:29 pm #5604

JulieMarie
Member

CHeryl & Terri,

Thanks for the replies. Well the doc put her on 4 rounds of Vidaza back in January, we have another 2.5 weeks for next appointment and then a bmb the following week. From there the doc is going to re-evaluate her MDS and say she’s either into remission (I Hope) or if we are going to be going to start the search for a BMT (this should be good turn out since she has 5 bothers / sisters)
Author

Posts