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

Having 2 clean biopsies clear of blasts is a really encouraging for your dad! Hopefully being able to take a break for a month or so will allow your dad’s body recover and see his blood numbers increase. I had a different treatment for my AML. The first month I rebounded quickly. But each subsequent month my body was a little slower to recover after the week of chemo. Once I was finished with treatment regeneration happed fairly quickly. But it worked to kill the cancer cells, which was the goal.

Oh gosh, that’s really discouraging about the Flomax no longer working for your dad. My husband had a similar issue after being on it for a while. His doctor switched him from Flomax to Tamsulosin and Finasteride. That has really helped him sleep through the night! Especially the Tamsulosin. It might be worth mentioning to your dad so he can discuss it with his doctor. Not getting any sleep is awful. Especially with his ongoing chemo treatments…he will naturally be tired! Poor guy!

Wishing your dad all the best! I’d like to follow him along so let me know how he’s doing, ok?

Hi Lori, I am new here and thankful for all you do. My husband who was initially diagnosed with MDS late last year was on Vidaza which showed no improvement after 5 cycles with 10%+ blasts as shown in his recent bone marrow biopsy. He had been recently switched to the Decitabine/Venetoclax protocol going on his 2nd cycle next week. Although probably too early to say, apart from fatigue he shows no other side effects, maintains good appetite and reasonable sleep time. However he has needed transfusions last week (and had one last month as well) as his blood counts have been seriously low at 0.40 WBC/2.08 RBC/11 Platelets which his doctors warned us would get worse before they get better. It is encouraging to hear IamHisDaughter's Dad responding favorably to the same treatment and wish him recovery. My husband is also diagnosed with mid-stage prostate cancer which he received Leuprolide/Eligard. Although being treated out of the VA Hospital, both his oncologist and hematologist work out of Moffitt Cancer Center in Tampa, FL.

Welcome, @terdor! MDS treatments aren’t “one size fits all” because there are variables with each person. I’m sorry your husband didn’t respond well to the Vidaza alone. The Decitabine/Venetoclax can have positive results as you’ve seen with some of the posts here in this discussion. So we’ll be optimistic that this will be the charm for your husband. ☺️

His doctor is right, the blood numbers may get lower before they get better with this treatment. I know that can feel like a setback or huge disappointment. But it’s vitally important to clear out the blast cells. While there are only 10% in his circulating blood, (there shouldn’t really be any) that means there are much more in his bone marrow, interfering with healthy blood cell production. So once those blast cells (immature, defective white blood cells) are killed off with the chemo, your husband’s marrow will have more of an opportunity to help replenish his body with healthy cells. That’s the goal.

So hang in there! Blood and platelet infusions may help him to feel better and keep his numbers reasonable in the meantime.
How has your husband been doing with his treatment for prostate cancer?

Thank you for your much needed encouragement. He has not noticed any difference since his prostate treatment was administered over a month ago. He is scheduled to get another shot in 6 months. Will keep you posted. Again, thank you for your support.

I am starting ara-c with Venclexta Monday. Treatment requires shot of ara-c twice a day with 1 Venclexta tablet daily. The shot has to be at Mayo so I will be driving 100 mile round trip twice a day for 10 days. Whether I continue after that will depend on side effects. I have the NMP1 mutation.

Getting ready to take him to his third infusion this week. I just wanted to say I appreciate the conversation.
I just lost my Mom a couple of years ago. She was young and it was a long almost 10 years of being a caregiver. Now just a couple of years later we receive this news with my father and it was so unexpected. He has always been healthy and very fit. Not too long ago he competed in bodybuilding contests. Being a care giver is exhausting but I wouldn’t trade it for the world. It’s an honor to be able to care for your parents.
You are so very kind and supportive. I really appreciate you and will continue to pray for you.

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

Hi my name is Jacklyn and I have been diagnosed with AML progressing from CMMl. My first diagnosis 6 yrs ago was MdS low risk. My oncologist had put me on hydroxyurea a year ago and I did well. It brought my white count down to normal. But this year I did another bone marrow biopsy and it came back I have AML. My oncologist is meeting with the tumor board next week to discuss my treatment. She did mention something about 7 days on sounds like what you are doing. I am 77 so no transplant. Have you ever had itching from AML. They say the treatment will probably stop that. I take loratadine for. That and it helps a lot. I have a lot of fatigue as well. I would like to keep in touch with you. Lori has helped
Me a lot. She is a God sent.

Welcome, @terdor! MDS treatments aren’t “one size fits all” because there are variables with each person. I’m sorry your husband didn’t respond well to the Vidaza alone. The Decitabine/Venetoclax can have positive results as you’ve seen with some of the posts here in this discussion. So we’ll be optimistic that this will be the charm for your husband. ☺️

His doctor is right, the blood numbers may get lower before they get better with this treatment. I know that can feel like a setback or huge disappointment. But it’s vitally important to clear out the blast cells. While there are only 10% in his circulating blood, (there shouldn’t really be any) that means there are much more in his bone marrow, interfering with healthy blood cell production. So once those blast cells (immature, defective white blood cells) are killed off with the chemo, your husband’s marrow will have more of an opportunity to help replenish his body with healthy cells. That’s the goal.

So hang in there! Blood and platelet infusions may help him to feel better and keep his numbers reasonable in the meantime.
How has your husband been doing with his treatment for prostate cancer?