Things just got worse. Diagnosis is now acute leukemia (AML)

@bettersleep68 If this helps you out, I have spoken with other people who had difficulties with the injections. Their oncologist then switched over to Vidaza infusions and it worked out much better for them. Might be something to talk over with your doctor. ☺️

I was diagnosed with AML in March of this year. I am taking chemotharapy pills, in cycles, one cycle a month,for basically 7-days of venetoclax and 5-days of Inqovi . Along with the daily: antibiotics, antifungals and antivirals. I do not get the injections, some of you have mentioned. I have had 4- bone marrow biopsies , but I think you are going in the correct direction. My largest change is established with Sanford Health-Fargo, but since I libe in Wyoming, the decision has to be closer to the cancer center, so be switching to Huntsman in SLC for a stem cell transplant Sounds-like you too are on the corect track, keep the hope and share your experiences and questions.

I finished my 7th chemo shot today. Here are are my latest blood stats. I did get a bag of red blood today after the blood draw. I was hoping I could go out and run a marathon after what the nurse said was a bag of high octane blood, but its not gonna happen.

Hi Terry, @twitt1949 You were definitely a ‘quart low’! And I wouldn’t suggest taking up knife juggling right now either😅
I’m sure that high octane blood helped boost your energy a little bit…but no marathons for a while, my friend.

But do, keep taking little walks throughout the day if you can muster the energy. It helps keep everything flowing and working. Lots of water too! Also, take your temp a couple times daily. A temp of 100.4 = call your oncology team for direction. ☺️

Is this the end of the first cycle of Vidaza while you continue with the venetoclax?

bmt I've been receiving the injections 5 x per week, every 4 weeks. I'm rather skinny and have limited area for 10 injections. It is like having a sever sun burn. where would I get more info on the infusions and is there a down side. Thanks

Hi @foxfarm. I can appreciate how uncomfortable those injections must be…especially when there isn’t a lot of extra meat on your bones! 🫤
I don’t have any personal experience with Vidaza and was only passing along information from some acquaintances who were able to make a switch from injections to infusions. Both were able to tolerate the infusions much better than the injections. Though infusions were more time consuming. We didn’t discuss anything else such as insurance, cost, requirements for making the switch, etc..

The best source to find out if infusions are availble for you, would be to ask your oncologist or NP. At least then you’d know if this was an option for you.

Yes, and probably Inqovi and venetoclax pills taken for about 7 days per month. I haven't had any major side effects from the pills and they are working. Received bone marrow biopsy results leukemia blasts are almost gone (good thing), but still you must continue therapy. Thanks for sharing and asking questions, it helps all of us.

@twitt1949
Your blood results are similar to mine, with my white blood cells 0.8 ( this is high for me). I'm not getting the shots, just pills. But, no marathon here either. My hemoglobin has increased from 6.1 to 11.1, shortness of breath has improved significantly, I can actually walk a block now. You are improving. Keep up the good work and continue to ask questions, post results and tell us how you are doing.

@rrtdave are you taking just pills and do you have any mutations.....would like to switch injections to oral medication ....just trying to find out what others are taking for aml treatment

Just pills: venetoclax and Inqovi.
AML with myelodysplastic related gene mutations and anti-S antibodies. I do have a peripheral picc line in my arm with 2-ports for blood draws or fluid infusions. Hate needles as much as others.
I started chemotherapy pills only in July, 1-week a month, and my August bone marrow biopsy shows an improvement with very few leukemia blast cells remaining. The plan for me, is a stem cell transplant, first of the year, so I need to obtain Medicare or supplement part D, in October.

Thanks for the reply and information.