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

Hi @tampakaren. It sounds like your AML was caught early as you transitioned from CML. You mentioned you’ll be starting treatments with Decetabine/ Venetoclax simlar to @lindagi. Linda’s experience has been very encouraging for anyone with AML who isn’t able to have the bone marrow transplant. I’m sure she’ll be happy to answer any questions and share her journey with you.
Wish you well with your treatment!
Do you have any specific questions?

Hi,
I can update you on how my AML treatment is going. This month I will have my 22nd cycle of Venclexta and Decetabine at Mayo Clinic in Jacksonville. My latest bone marrow biopsy showed that I continue in remission with no blasts. So I am coming up on my 24 month anniversary of my start of treatment - a milestone to celebrate!!!
I continue to be very lucky with side effects. Since I get a little more tired, longer naps or earlier bedtimes are frequent. Although some heavy duty house chores leave me winded, I am able to take care of everything else without too much difficulty. Because I am neutropenic for about 3 weeks of my 5 week cycle, I have to limit in-door crowds then which does cut down on chances to socialize. Nonetheless in August we timed a great trip in my "safe period" to take my grandson on a trip to Washington DC! I am a faithful mask wearer when shopping, quick visiting, etc.
Please let me know if there are any questions that I can answer for you. It is very scary to get a diagnosis of AML but I believe we are very lucky to have this treatment available.
Linda

Linda, it’s so encouraging to hear your continued good news about your treatment for AML. It really offers hope to anyone not being able to go ahead with a stem cell transplant! I know there are some down times with the neutropenic cycle but you’ve really learned to work around that issue and embrace the fact that this has really given you the ability to live a pretty normal life…with a few adjustments, of course. It’s fantastic that you were able to take your grandson to DC! How exciting and memorable for both of you! ☺️

But I know first hand that AML is no picnic and can be a bear to control. So your story is just so positive! Thank you for sharing! And happy 24 months!! That is definitely a milestone worth celebrating! What special thing do you have planned?

Thank you Linda,
I’m so glad you have had a positive experience on this treatment overall. Your positive attitude helps me feel less apprehensive. I will have a Pet Scan Wednesday because I have myeloid sarcoma, lesions that appeared on my skin and they want to see if there are any internal tumors. I’ll let you know how things progress.

Thanks Lori,
I don’t have any specific questions yet but probably will when I begin the first cycle. Thanks for your continued support.

Hi,
I am sorry to hear that you have this additional worry to deal with. Please do let me know how you are doing.
Linda

My Dad, 78, was just diagnosed with AML in October. He started chemo in November, Decetabine and Venetoclax. He did very well with the chemo. Unfortunately, his platelets haven’t recovered and we usually take him for platelet infusions 3 times weekly and blood infusions 1-2 weekly to get his hemoglobin up. (They try to keep his platelets at 20 and hemoglobin at 8. )

We just saw his team on Wednesday and they are going to try and prescribe with insurance approval some medication to try and help increase his platelets.

Welcome to Connect, @immaninja. AML can be one of those tough birds to treat. Years ago there weren’t many options for patients especially as we age. So I’m really happy to hear your dad is responding to the treatment. As you can see from @lindagi sharing her experience, she’s the same age as your father and doing really well.

Is there any news about whether your dad is in remission? Did your dad have any mutations which caused the AML?

Yes Mam, Wednesdays appointment Doctor confirmed last two biopsies showed no leukemia and/no blasts. They are holding off starting second round. His doctor wants his platelets to increase, gain some weight and let his body recovery. Unfortunately, he doesn’t get much sleep due to enlarged prostate. It appears that the Flomax isn’t working for him. He never sleeps more than 3 hours at a time due to getting up and having to empty is bladder. It’s so frustrating. He is so tired and he really could use some solid sleep to allow his body to heal and recover. I believe he did have mutations. I will need to reread those notes in his portal.

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?