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.

Venetoclax and Decitabine

Tagged: Venetoclax and Decitabine

This topic has 4 replies, 3 voices, and was last updated 2 years, 7 months ago by Kathleen Till.

Viewing 5 posts - 1 through 5 (of 5 total)

Author

Posts
August 19, 2021 at 9:43 pm #54851

Minnie
Participant

I was diagnosed with MDS. I WAS IN REMISSION with Marginal Zone Lymphoma
Taking Imbruvica. My platelets were low so I had a bone marrow biopsy and MDS was found. I have just had my second round of infusions of Decitabine. I’m taking 420mg of venetoclax. I have not needed any blood transfusions so far. My question is has this treatment been successful for any other MDS patients? I sure hope the answer is yes.

August 21, 2021 at 3:35 pm #54866

Kathleen Till
Participant

Minnie,

I cannot really help with this but want to say that I have high risk MDS and was going to have bone marrow transplant two weeks ago.

Unfortunately, my blasts were not low enough so I was given Venclexta along with my regular 7 day chemo treatments. I took 200 mg for 28 days. Finished a week ago.

Having biopsy on Monday to see if blasts have gone below 5, which I think they have. Reason is my platelets were at 34,000 and yesterday rose to 134,000.

That’s all the info I have and if biopsy is good then BMT will be Sept 4th. It has been an agonizing wait, total five months of chemo.

Kathy

August 21, 2021 at 4:04 pm #54867

Minnie
Participant

Kathy,
Thanks for responding. I haven’t gotten any other responses.

I wish you all the best with your BMT. My platelets were 19 last Thursday. They had gone from 69 to 10. I’m sure they will go back up.

My doctor never mentioned a BMT. I think it’s because of my age. I’m 77.

Good luck and thanks again.

Maria

August 29, 2021 at 8:20 am #54879

Jean Ira
Participant

Kathy,
What chemo medication treatment are you on?
My husband’s doctor said he will likely start in a month if he remains on the path he’s been on.
His platelets are 16. He has been taking Promacta for platelets. It helped some for a couple of months.
He has low RBC and WBC. Like you, Maria, he isn’t a candidate for BMT.
Jean

August 29, 2021 at 1:34 pm #54881

Kathleen Till
Participant

I was on Azacitidine 7 days a week for four months. I was due for Bone Narrow Transplant in August, but after my biopsy they cancelled it as my blasts were too high.

They then decided to give me more Azacitidine along with a fourteen day course of Vendaxta pills 200 msg.

Had biopsy last week and it appears it has helped not sure how much yet. Strange thing is my platelets went up to 409,000 from 34,000 having been as low as 13,000. My whites are really low but this is what the pills do.

I am due to go in this Saturday 4th September. By the way I am 73 now. I am getting anxious now though.

Hope this helps.

Kathy
Author

Posts