Anyone with AML? If so please let me know anything helpful.

He knew full well it was risky. I pushed him! He “won”! He wanted to live - not just a few months but a long time!
Locally, the oncologists told him he was going to die. There was no hope!
MDA was bluntly honest and explained the risks thoroughly to him and his wife.
Centers are different. A center like MDA may give you different options.

@loribmt Well my daughter spent the afternoon on the phone working with U of M to get me scheduled for a appointment with the hematology/oncology department Rogel cancer center. I’ll hear more next week I hope. I’m not sure what to expect but this is necessary to try.

Hi @babshere1 I’m relieved to hear your daughter has been in contact with the cancer center on your behalf. While AML can be aggressive and pose some challenges, there is never a reason for your doctor to just throw up his hands and dismiss you! The callousness of your previous doctor is really disturbing.

To do nothing is, well, to do nothing. So it’s important to get this 2nd opinion with a new medical team and possible treatment options. Wishing you well going forward. Please keep me updated, ok?

@loribmt I will Lori. I’m afraid of being disappointed since I don’t know if I will be unable too receive any life saving help due to age as I have heard from others my age. However I’ll give it a go!

Good morning, @babshere1 Well, what you do know is that your current oncologist doesn’t have your best interest at heart. So it’s vitally important to be able to see another specialist soon and it sounds like that may happen this next week.
I will agree that at age 79, most clinics will not consider a bone marrow transplant because the risks of the chemo involved and the lengthy recovery process isn’t always in the patients best interest. However, there are newer medications that have been developed since my own experience with AML 7 years ago, that now allow older individuals with this form of leukemia a fighting chance!

That’s why I just don’t understand your current doctor and his lack of follow through. If one medication doesn’t work there may be alternatives. Which is why I’m stymied with your doctor’s quick dismissal and that lack of compassion.

We can just never give up hope. I remember the day I was diagnosed with AML and rushed to the hospital near death. A doctor whom I’d never met before, a hematologist oncologist, sat at my bedside holding my hand while talking to my husband and me. He was very forthcoming that the odds were not in my favor but he and his team would do everything possible to get me through this. He encouraged me to never give up hope because it makes all the different in the world. That’s the power of positivity all doctors should have.
I didn’t give up and I can see you’re the same mind set! While there are no guarantees, it’s important, at least, to find out what your options are! My attitude was that I’d either make it or I wouldn’t, but that I wasn’t going down without a fight!
How have you been feeling since you were released from the hospital? Are you experiencing more fatigue or any other symptoms?

@loribmt I don’t have any outstanding new symptoms. As a matter of fact my symptoms were bruising and fatigue. I don’t have any known new bruising but the fatigue is much better than months ago. Fatigue comes and go now. I never have had bleeding or many of usual symptoms of aml. My labs were the signal something was wrong . CBC pretty much off of normal especially wbc and playlets.

@babshere1 Considering that your fatigue is much better than months ago is encouraging. The 3 infusions you had may have reduced the cancer cells (blast cells) in your blood for now. With AML, the blast cells can proliferate to the point where they occupy so much room that the red, oxygen carrying cells, are crowded out. That brings on a debilitating fatigue. If the infusions hadn’t worked, from my own experience with AML, you’d not be feeling so perky. ☺️

Sending positive vibes that you get that call back from the U of M cancer center soon. If not, either you or your daughter keep calling to get an appointment. There is no reason to give up hope!

You did not say which drug you got. But the standard treatments for AML use drug combinations. There are several to choose from. And Drs also give some extra drugs to protect you form infections and altered biochemistry. You need a specialist to fine tune all of these prescriptions for you!
I am 78 y.o.; diagnosed last fall. Began Azacitidine + Venetoclax as my chemo combo in December. For me, the rx worked very quickly to reduce my blast counts; I went into "morphological remission" in only 3 weeks! And I only became mildly nauseous most days (that treated easily with rx). The catch is that you must repeat rounds of these drugs every 4-6 weeks. But it is only 5 days of IV infusions at the start of each cycle. These are simple, non-traumatic IVs running into my port (usually about 15 minutes total). This is doubled up with pills of Venetoclax, those taken for 2 or maybe 3 weeks straight. After that a 2 week break until the next cycle begins. Some people get sick in early months of treatment: more do not. Ven/Aza tends to be the treatment used for older people. It must be continued indefinitely to keep the AML at bay. Look for a center which knows how to handle these drugs. You may kick your AML to the ground for a few years, at least.
Good luck!

Three years ago, my husband at age 71 was diagnosed with AML/MDS. He has had 25 rounds of chemo shots …1 per day for 5 days as a round… It was determined he has an IDH1 gene mutation for which he takes a targeted therapy, Tibsovo, which is $32,000.00 monthly. Thank God, Medicare pays all but $2,000.00. His oncologist is right on top of his treatment, encouraging him and advising him that he has other treatments in the event it is needed. He is with MD Anderson/Ochsner Hospital.

My husband was an athlete his entire life, and 8 months after he retired, he got ill. His metabolics are beautiful, and this may be why he responds well to treatment. When first diagnosed, he lost 50 pounds, but he has gained 25 back in the last year. We praise God for always being by our side.

I do hope you find a doctor who will do what is necessary for your treatment. Be aware he is waiting for you to find him.

@hsminc do you know what his current quality of life is like? Does he have gvhd and if so, how serious? I’m 74, and trying to decide whether to have a stem cell transplant. Thanks