AML, age 78, taking Decetabine/ Venetoclax, no transplant

Welcome to Mayo Connect @lindagi! I’m sure that diagnosis of AML (acute myeloid leukemia) really knocked you for a loop. I can empathize after having the same diagnosis 4 years ago at the age of 65. From my understanding, further treatment with meds for me weren’t an option because of 3 mutations complicating things. So, damn the torpedos, full speed ahead, I guess. 😅

The Decetabine/Venclexta regimen you’re on is one of the newer combination of treatments that show great promise in keeping the cancer cells under control for patients who aren’t able to tolerate the harshness of the usual chemo. I’m excited for you to hear that you’ve been remission for 16 months! That’s fabulous! ☺️

While we’re waiting for other members to share their experiences with Decetabine and Venclexta, I found one member who had AML and was treated with Venclexta and another medication before proceeding onto transplant. Not the same combo that you were on but @edb1123 may be able to tell you more of her experience while taking the Venetoclax.

This is her story of AML and treatment:
https://connect.mayoclinic.org/comment/335080/
Are you still taking the medications? Did you experience any side effects?

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

Good morning, Linda. Knowing what an arduous battle AML can pose, I’m really thrilled to hear that your treatment with “old people chemo” (love your term!) is really maintaining remission. That type of news looks so promising to future patients who are perhaps beyond the comfortable age of a bone marrow transplant or for some other reason, not able to have the standard chemo.
From experience, that was pretty rough and thankfully worked to get me into remission. But my doctors told me the 3 mutations I’d acquired put me in a high category for relapse within a short time and a BMT was my only option. Fortunately I was younger at 65 and in excellent health otherwise with no comorbidities. But your news is so encouraging!

Since having AML and the transplant, I’ve met so many incredibly compassionate and caring people! The staff at my local hospital and Mayo-Rochester have become second families. These people saved my life and have allowed me the opportunity to give back. So it’s my pleasure to be able to help calm fears, provide information based on first hand experience and to just let others know they’re not alone in these journeys. There are very few things others haven’t gone through too! We just have to find each other. ☺️.

Speaking of finding each other, I just have a share a story of a young woman I mentored who had AML and required a transplant at Mayo Rochester. We were actually able to meet in person with her family and have kept in touch since then. She’s a remarkable young woman, now healthy and living her life to the fullest. Mayo decided to do a little article on our story… https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/mayo-clinic-connect-brings-together-2-women-with-leukemia-46-years-apart/

You have no idea how many people will read about your experience, Linda, and it will give them hope. ☺️

Please keep in touch, ok?

Great article, Lori! Thanks for all you do!

Hi Linda,
I am not familiar with Decetabine. I was on Vidaza and Venclexta. Congratulations on being in remission for 16 months. My hematologist/oncologist told me that the Vidaza/Vencelxta combo was a "game changer" and I went into remission pretty quickly. They are always coming out with something new. I am 71 years old and will be going into the hospital on Friday for a BMT. Keep the faith. I wish you all the best.
Jan

We’ll all be pulling for you, Jan as you head for transplant.
I initially thought about my new stem cells as those little yellow Minions rushing through my body ready to take on the toughest jobs! Then my husband said they were more like Imperial Storm Troopers. 😂. That one I really liked! So quite frequently I had the theme for Star Wars and for the storm troopers as an ear-worm propelling me forward.
Stay strong, stay positive, you’ve got this! ☺️ May the force with with you! Keep us posted!

Hi Jan,
Thanks very much for your encouraging message. Yes, there always seem to be new drugs coming down the pipeline. We are lucky to be benefitting from them.

It is wonderful that you are have arrived at the point where your BMT is just ahead. Sending good wishes your way,
Linda

I’ve just progressed from CML to AML and will be starting same treatment next week. I’d love to hear your experience. I have JAK2 mutation.

@jan8. Hi Jan, I don’t know how this slipped past me but you were heading for a BMT in July! Here it is 6 months later and the major excitement should be slowing down by now! I’d love to know how your transplant experience was and how you’re feeling!

If you’d like to share your story, I have a couple of discussions I started a few years ago where I’ve encouraged other BMT members and transplant patients to ‘show and tell! I’d love to see you in one or both! ☺️

My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
~~~
Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
How are you feeling? Is your energy returning?