Hi, Lori and @lindagi!: When I was on Venclexta and Vidaza, I did not have many side effects. It was the easiest chemo I had, and it was very effective! My doctor was giddy with how well it worked! 😊 My hematologist/oncologist said he may consider using these drugs first instead of the 7+3 regimen. I have not been on those drugs since late 2020. Originally, my doctor wanted me to stay on them after transplant as maintenance, but then I got pneumonia so he stopped them. @lindagi!, I wish you the best of luck! Never stop fighting!

Hi Lori,
Thanks so much for welcoming me to Mayo Connect and for searching for some folks whose treatment is similar to mine. @edb1123 did reply to me. Although her situation was different, it was good to hear that Venclexta has worked for others and with few side effects. I will send her a message.

You asked about my current meds. Yes, I am continuing to take both chemo drugs. We live about 20 minutes (if I don't hit any of the lights) from Mayo Jacksonville - very lucky! As I leave the house to head for my 5 days of infusions or weekly blood work I laughingly tell my husband I am off to work. And it does feel as though this is my job now, trying to stay healthy as long as I can. My husband is my rock in that effort.

I have also been very fortunate to feel quite well during these past months. Biggest side effects have been fatigue and being immunocompromised. I call my regime "old people's chemo" - low dosages save me from many of the terrible effects of stronger chemo.

We have learned to do careful calendar planning. I do as much as I can with family and friends during the 2 weeks that my blood counts are good and then lay low quite a bit for the next three weeks and wear my mask when there is any risk. Of course I also take my daily Rxs (anti viral, bacterial and fungal). I haven't had as much as a cold since this started!

The Mayo team has been great. We especially appreciate their willingness to juggle my infusion weeks so that we can do other things important to our family. For example, we moved my cycles to allow me to host my husband's 80th birthday party and for an upcoming baseball junket with our grandson.

We have been told that research shows that my drugs are keeping people in remission for a median of 17 months. I am just about there, grateful to have made it this far, but realistic about the lack of a cure. (I do believe that all the advice I received about not pursuing a BMT was good advice for me.) That leaves us uncertainty about how long my current remission can last. It brings an altered world view for both my husband and me.

I am reaching out now because I have not been able to find anyone with my treatment routine. Mayo is trying to find someone locally who would like the talk. I would also welcome someone from Mayo Connect so that we can compare notes on our experiences, share ways we are coping, etc.

You are doing such important work. I can tell from scrolling through just a few of your texts that so many people are being helped by your knowledge and your kindness.
Gratefully,
Linda