Starting my 62nd Cycle of Vidaza

[Heinz]

Hi Owen and Amy,
Just to avoid any misunderstandings, I really hope you don’t take my comments as know-it-all meddling. I read with great interest your experiences with the common disease and am interested in the somewhat different treatment methods. However, I am in no way interested in assessments.
In this sense I hope for further interesting exchange.
I wish you a happy and healthy Christmas.

[Michele Polland]

62 rounds, wow!

Just preparing for my 8th round of Dacogen (started off with Vidaza). Almost from the beginning I’ve had a serious, debilitating problem with itching (no rash just itching that makes my body feel on fire). Just wondering if any of you experienced such a reaction. My bloodwork is improving so I suppose it’s working. Benadryl and Pepcid did not help at all. Prednisone helped to some extent last month but I’m dreading my next round. Any suggestions? Thanks all!

[Owen Maguire]

I started this thread on Oct 26,2021, mainly to let readers know that there were people with MDS on Vidaza who fortunately were having their life extended long term and were taking advantage of this time to do things that they had been thinking about but never got around to doing. As an aside, I have just finished writing the future Obituaries for my wife and myself. While this might appear morbid, I found it very therapeutic as my mind searched over events that had occurred which formed who I am and despite misteps along the way,I could still look in the mirror and be pleased with what I saw. Most important of all it reinforced all of the love I have for my wife, who is in care with Dementia,and the sacrifices she made as we moved 12 times across Canada for my career. Any thoughts that I might have had of slacking off on my fight against MDS have been thrown aside as she needs my full support as long as I can give it to her. To Heinz and Amy I will continue to monitor any reports you put out on how you are progressing with your own fight and know that you will always be in my thoughts and prayers.

Owen

[Heinz]

Hi Owen and Amy,
wish you a happy new year 2022.
I wanted to report on my current treatments.
I have been taking 400mg of venetoclax daily since 12/10.
I received my second EC transfusion on 12/22.
In week 52 I received the 23rd Vidaza cycle.
At the start of the injections I had the following blood values:
WBC: 1.8, RBC: 2.9, Hgb: 10.1, PLT: 41, NEUT#: 0.7.
Despite the Hgb value of 10.1, which was high for me, after the 4th day of treatment I was very weak, suffered from mild nausea and was unsteady on my feet.
I don’t even like to imagine how weak I would have felt without the EC transfusion.
I am still taking the 400mg Venetoclax every day but I expect that the dose will be either reduced or suspended if the blood results are too bad at the control on January 10.
What do you think Amy?

[Amy S.]

Happy new 2022 to you all. Thanks you Owen and Heinz for sharing your treatment information. My initial numbers before treament were worse than yours( to be exact WBC:0.9, RBC:3, HGB:10.7, ANC – Neut: 0.28, platelet: 198). I shall try to describe my journey. Sorry, not know enough to have deeper insight. Also since everyone’s response is different, please just take it as a reference. A nurse told me then that counts were just numbers, what was important was how you felt and they were interested in watching the trend rather than raw number. In my case, after 3 cycles ( 1-Feb) , the numbers got little worse and so we started Venetoclax. At first I took it every day ( 100mg) with antibacterial, antifungal and antiviral drugs. After 3 weeks, the numbers were worse so my treatment was stopped for a month. Then they did a BMB (bone marrow biopsy to see if blasts had improved), then back on with ven for 2 weeks only. I was never on 400mg venetoclax but 100mg. The dosage might be based on interaction with other drugs that you are taking and might be based on your build. I am of small frame. Wish you and Owen best of luck in your treatment with Venetoclax. Starting next cyle, I shall be on an every 6 week cycles instead of 4-week cycle ( ie. 5 weeks in between cycles instead of 3 weeks in between cycles). Hope it works out. Thanks.

[Author]

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