← Return to Acute Myeloid Leukemia (AML) - Treatment of 75 year old is working!

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@oldestmisstee

My mom(75yr old) was recently diagnosed with AML-M7 (acute megakaryoblastic leukemia) which progressed from JAK2 myelofibrosis (which she was diagnosed with almost 15 years ago). She's being treated with venetoclax and decitabine--finished her first treatment round today. Docs have said she is a "complicated case" from the beginning. She has other health conditions etc.

She and my family are very head-in-the-sand about prognosis etc. Her oncologist was realistic with me (eldest daughter), including telling me that I need to move back since time isn't certain. But I'm at a loss about how to talk with my dad and siblings. I'll be primary carer (eldest daughter) plus keeping up with my job.

I guess I'm just looking for basic support from people who are going through similar experiences (my mom's or other carers). It is one thing to talk to doctors and read journal articles, but hearing how others are dealing with the day-to-day impact would really help with this big transition.

Especially any tips about diet (she has very little appetite) and exercise (she's never been active). Also any "benchmarks" with treatment, remission, etc would be greatly appreciated.

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Replies to "My mom(75yr old) was recently diagnosed with AML-M7 (acute megakaryoblastic leukemia) which progressed from JAK2 myelofibrosis..."

Welcome to Connect, @oldestmisstee.
I know this is a challenging time for your mom, you and your family. AML can be difficult to treat, especially as we get older because some of the treatments such as aggressive chemo or a bone marrow transplant may not be practical. With the availability of some of the newer treatments such as the combination of venetoclax and decitabine or venetoclax and Vidaza (azacitidine) hope is given to patients who may not have had many options.

The meds are still hard on the body as they are working to rid the body of cancer cells. The meds kill quickly dividing cells, such as cancer cells. However since they’re not discriminatory, other quickly dividing cells are also impacted such as cells lining the gut, esophagus, oral tissues, hair follicles and finger nails. So your mom may experience some nausea or noticed some mouth sores, etc.
As for lack of appetite. That’s kind of par for the course. She may not feel like eating but it’s important to get healthy proteins and key nutrients down. She may want to consider some nutritional shakes or supplements like Ensure. My husband used to make up containers of small portions of food. I mean bite sized bits of sandwiches, grilled chicken breast, small portions of left overs…that type of thing. I couldn’t face an entire plate of food. So I’d grab little portions of what appealed to me at the time. If you can encourage your mom to drink plenty of water too, that’s a key to keeping her body flushed of toxins and staying hydrated. Room temp water is most beneficial!

Your mom’s oncologist was realistic talking with you about your mom and what to expect. You’re wondering how to speak to your dad and siblings. They’re going to need a ‘cometojesusmeeting’ to get beyond their ‘head in the sand’ attitude about the prognosis. It can take time for people to cope with this type of news. So that may be some of their complacency. But AML can be a ‘get your affairs in order’ diagnosis. Treatments can work very well. But if they don’t, AML can progress rapidly, not giving a lot of time for meaningful conversations and preparations. Having been there myself, that’s my two cents worth! Beating around the bush or having head in the sand won’t change facts of the diagnosis. Quite frankly, I’d take that same approach as the doctor. You need to have some frank and open discussions with them. This shouldn’t all on your shoulders.

Your mom, IF all goes well with treatments, will be on a monthly cycle of treatment. She should be able to have a fairly ‘new normal’ life style with ups and downs during the month. But many patients on this regimen of meds lead pretty active life styles. Attitude will make a huge difference in outcome. If she and her family can keep a more positive attitude it can impact the day to day existence!

There are several members in the forum who have similar stories as your mom with some very positive outcomes! I’d like to introduce you to a few of them such as @lindagi, @sonieaml @dancouclanel4 who have been treated with similar drugs as your mom. Here are a few links to these discussions.

~AML successful treatment
https://connect.mayoclinic.org/discussion/aml-successful-treatment/
~Acute Myeloid Leukemia (AML) - Treatment of 75 year old is working!
https://connect.mayoclinic.org/discussion/acute-myeloid-leukemia-aml-treatment-of-75-year-old-is-working/
Read through some of these discussions and feel free to tag any member by included their full @name or simply click the blue reply button in the reply you’re wanting to comment on. That should send a notification to that member.

I’m here for you along with so many of us who had/have AML. Feel free to ask anything and please let me know how your mom is doing. And YOU! Because being a caregiver is a challenging labor of love. Is moving back home going to be a big challenge for you?

Lori is hitting the nail on the head. No two cases are alike. Their journeys are different yet the foundation to progress is the same....u have to become a Para doctor for yourself, e.g. Like a Para legal. Lori provides foundation better than me, she has seen alot more than I have. Improvement can be measured in how many days your platelets require to reach their pre chemo treatments....or if they stabilize to one # etc. If they are doing that your body is trying....go to youtube.com and look up what to eat to help platelets increase...this is one example. Point is this....DON'T QUIT. 77 to 78 tells me my body is trying. 77 to 87 tells me and I've changed my diet that it's helping...the life of platelets rqr more time than wbc so recovery is longer....FIND THAT SWEET SPOT IN YOUR TREATMENT. THERE IS ONE. GOOD LUCK.....