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

@twitt1949 Well golly, that’s not the news you were expecting to hear, to be diagnosed with AML. Me either, not with your diagnosis of low risk MDS. But things can change unexpectedly and unpredictably with some forms of MDS.

I want you to take a deep breath because this was caught early. There are wonderful newer meds on the market that make AML for we older folks treatable. You didn’t remember the names your doctor mentioned. But if it’s a combination of two medications it’s most likely drugs such as decitabine and cedazuridine OR Vidaza and Venetoclax. There are other treatments as well but these are the more common. They are lower intensity chemotherapy drugs for older people where the tolerance for aggressive chemo wouldn’t be suitable.
Several members in the group have taken these combinations of meds for their AML and it’s quite successful for them.

I know you’re pretty rattled right now but these drugs can work to get you into remission. They may even help with all the symptoms you were having! We can talk more about all of this as you learn more from your doctor.

If we can, let’s keep all the conversations right here in this discussion you’ve started instead of posting a new one. That way all of the conversations will be cohesive so we can follow right along. Ok?

What would you like to know? When is she suggesting you start treatment?
Your latest blood work most likely showed evidence of blast cells. Do you know the percentage?

@loribmt Hi Lori. Yes my blasts 27 I think. I just got out of the hospital last week for 4 days with atrial fibulation which I think I had for a few years and didn't know it. Now they got my heart working ok, I feel great. I thought things were going great then this. My doc say she wants to get me on this new treatment immediately.

@twitt1949 Glad to hear you're out of the hospital and your ticker is back to a regular rhythm. Do you need to be on Eliquis or any blood thinners for your A-fib?

Well, the bigger news is the AML diagnosis. The presence of blasts changed the diagnosis. Blasts are immature blood cells that normally are not seen in the peripheral blood. Meaning they don’t show up on labs. They are generally located only in the bone marrow where they mature into productive blood cells. With AML, these blast cells are able to proliferate out of control and eventually there are so many inside the marrow that they spill out into the blood stream. If not controlled, they eventually crowd out all the healthy cells. And obviously that is not a good thing.

So your doctor will be starting treatment which will destroy the rapidly dividing cancer cells. That will help reduce the current blast cell %. Repeated doses will then help to keep that population down. In my own experience at the time of my diagnosis, my blasts were at 85%. That means 85% of my blood was cancer cells and only 15% blood cells. My hemoglobin was 4.7. I’m sharing that detail to let you know this can be treatable. ☺️

Do you know if there were genetic tests run to see what mutations are involved in your diagnosis?

@loribmt Thanks Lori, you have a way of giving hope. They took me off thinners because my platelets were so low. When I say I feel great, I mean better than I was but still have MDS issues and feel only about 90%.
Like I said she talked at least 30 mins. She went into detail what the cells are and aren't doing.
My son says he likes the idea we can now get treatment rather than just waiting and not doing nothing, waiting till it gets bad then do something. I don't know if thats a good thought or bad thought.
One question and it is probably too early and too broad of a question, after they start my chemo treatment, will I feel bad? Will I be able to live a normal life? How close do I have to stay by a hospital? Reason I'm asking is , one thing I'm afraid of is the middle of Aug both of my kids and their families have planned a camping trip that has been planned for over a year. Is this family camping trip thing out of the question or is it a wait and see thing? I just don't know what to expect after the chemo treatment.

@twitt1949 I’m sure there was a lot of information to absorb in your 30 minute conversation with your doctor. A new diagnosis like this can feel pretty overwhelming and a bit lonely. When I was diagnosed with AML, I didn’t know a soul with whom I could talk about it. My nurses and doctors were awesome. But even they admitted they would fall short when it came to speaking from experince. That’s why I’m here, along with so many other members to be able to help each other out and offer that much needed hope!

I’d like to tag a couple of other members who have been diagnosed with AML at a later stage in life. Their stories are inspirational and their chemo experiences will be similar to what you may expect.

Here are some links to conversations with @lindagi who posted this discussion and joined by @sonieaml @dancouclanel4 and others.
AML successful treatment https://connect.mayoclinic.org/discussion/aml-successful-treatment/

Since I was critically ill at the time of my diagnosis I was actually an in-patient for 5 weeks with intensive chemo. Many of the drugs used now were not available back then so there was no option other than the intensive chemo. You’re fortunate in that these newer meds have been developed which offer hope to patients 65+. As we age our bodies don’t tolerate the harsh drugs as well so these. New meds are a game changer!

Not knowing which drugs you’ll be getting I can’t really give you a schedule. But generally chemo is given for around 7 days consecutively and then on a cycle of every 28 days. With the two med combo there might be 7 days of infusion or injection and the rest of the cycle with pills. Again, I may be wrong depending on what you’ll be receiving.

Generally the 2nd week after chemo blood numbers do drop as cancer cells are destroyed. Remember our earlier discussion that chemo kills rapidly dividing cells. Chemo doesn’t discrimate and will also destroy other rapidly dividing cells such has blood cells, hair follicles, mucosal tissues in the mouth or gut. Week two and three there is usually a great deal of fatigue with frequent naps. Also since blood numbers drop, your immunity will be much lower, leaving you vulnerable to infection.

So I’m not sure what to say about your family vacation. I don’t think you’re going to feel spritely enough to travel far. And also, because of your being immuncompromised, care must be given to avoid infections…whether bacterial, viral or fungal. No wading in a lake or river, no gardening, raking, etc. and if you are around people it is important to wear a mask.

I’m just a ray of sunshine, right? This doesn’t mean your life stops. It’s a temporary bump in the road. With your blasts at 27% this is not a wait and see thing. Treatment should begin soon. After that, you can kind of play things by ear with how vacation unfolds. Your doctor and infusion nurses will be able to cover this with you on what precautions to take.

Your son is spot on…this is a good thing to get the treatment underway! The sooner this happens the sooner you can get back on track! Treating earlier wouldn’t have changed the outcome. But now it’s time.

You’ll be getting the treatment schedule soon. Then we can all give you more information as needed. ☺️

My husband was diagnosed with MDS over lapping Mylofibrosis symptom. His had a bone biopsy and the blast came back to 15%. According to his doctor 20% blast will progress to Leukemia. His been having chemo 7 days and 28 days off. I can tell the changes in him constantly napping. He gets blood transfusion at least once a week, but lately twice in a week. I don't know where his headed with all of these. His doctor said he only has days or months to live. I'm hoping that it does not happen and I'll leave everything to God.

@donirankin

So sorry to hear that. Our thoughts and prayers are with you.

@donirankin Sorry to hear about your husband. We will be praying for him.
I hope what I have is not the same. I don't know what over lapping Mylofibrosis symptom is or how it differences from acute leukemia.

Since my MDS as progressed into acute leukemia, does anyone have any statistics on the success rate of chemo with pills? Putting it in remission.
When I talked to my doctor, it sounded like the chemo I was getting was a low dose and for some reason I'm thinking she said its not like the high octane chemo some other chemo/cancer people take. Maybe I'm fantasizing but for some reason I'm thinking it isn't too bad. Has anyone else had this chemo and pills? I don't know the name of the pills I'd be taking, sorry.

I have aml and at 76 I have been in remission since Aug of 2025..i have been on venetoclax 100mg daily and vidaza injections for five days and then off for 28 days..it has done well for me..i take a nausea pill before injections but tolerate the oral pills....hope you have good results...just take one day at a time....