← Return to AML, age 78, taking Decetabine/ Venetoclax, no transplant

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@lindagi

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

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Replies to "Hi, I can update you on how my AML treatment is going. This month I will..."

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.