AML successful treatment

Hi @jacklyn Oh golly, you have been through the wringer the past couple of months! It does sound like you’re turning the corner for the better now after the IVIG infusions to help boost your immune system. The reaction you had is pretty common and the solution is just as you said, they lowered the drip rate. Usually after the first time reactions settle down.
Being able to get back on a treatment for you AML will be important. You asked about Inqovi. It’s often paired with another medication, Venetoclax, to treat older AML patients who can’t tolerate standard chemo. The results of studies show it’s been very effective. Whether it’s a good fit for you would be something to discuss with your hematologist oncologist. Their main goal at the moment, is to get your bleeding under control and your immune system stronger…which is looking promising! Yay!
But you can definitely talk to your doctor about the Inqovi to see if it’s appropriate for you. Sending a hug through the computer! ☺️

@loribmt yes now I am in ICU because how fast the blood was coming out. They gave me i lost count of platelet and blood transfusions. So now they put me on IVig about 8 bottles. I had a reaction the first time and it was awful but they had started the drip too fast. The doctor said this is a new med for her so slow slow slow. It worked. So tonight’s is my last bottle and the bleeding is practically gone. Next week depending on how I feel they will start vidaza. I was reading about invoqui. Is that for aml with low platelets 10 and re blood cells 60.

Hi @jacklyn Just wanted to check in with you today to see how you’re feeling. Are you doing any better? Are you still in the hospital? How’s the food? LOL that’s always the first question I got asked…

@lindagi
Thank you for sharing your AML journey. You mentioned that INQOVI only comes in 60mg.
I just started INQOVI on Tuesday 6/23 however my prescription is 35/100mg.
35mg of dectabine and 100mg of cedazuridine (allows INQOVI to be taken by mouth). My blood draws are back to weekly at least for this first cycle. My cycles are 1 INQOVI for 2 nights every 42 days. The info packet said it can take up to 4 cycles for numbers to improve. At that rate it maybe mid-December before we know how well this new treatment is working. You hit the nail in the head with posting about the researchers and the terrific progress being made!
Healing prayers for all!

@jacklyn Your son did the right thing in getting you to the hospital! I’m relieved you’re there now. With your compromised immune system the concern for infection is great. So you’re good hands. Those antibiotics will help get the infection under control. I hope then you can have the endoscopy to see where the bleed is coming from.

Goodness, my dear, you have a lot going on right now with the AML and now the fibrosis in your marrow. Thankfully our doctors have a full arsenal of weapons to use against our cancers! ☺️ Wishing you speedy recovery from this little setback so you can get on with treatment. Whatever they settle upon for you! Sounds like a lot of options. But getting past the infection and having your gut heal now is priority…along with nudging your blood counts up!
Are you able to eat ok? Can you have some unsweetened Greek yogurt to help sooth your gut and replenish the normal flora of your intestines?

Hi all,
Since I first posted to this discussion in January 2025 so much has changed in my AML treatment - and all for the better! This is an update on the treatment approaches that have kept me in remission for more than 4 years.

I transitioned off my routine of one week a month of 3 Dagogen infusions in August of 2025. Instead I began a self-administered weekly Inquovi pill which contains 60 mcgs of Dacogen. After about 6 months on that pill, my Mayo team suggested switching to an injection to deliver the Dacogen because my key blood numbers were not bouncing back well. The Inquovi pill only comes in 60 mcgs and cannot be divided. In contrast the injection strength is linked to my BMI so I only need about 1/3 of the Dacogen in the pill. I have been going to Mayo for the weekly injections for 4 months now with very good blood results.
I am so lucky to have the Mayo team to guide this journey. It has allowed me to live a happy and active life, despite my 81 years. For those of you also on this journey, I hope you take courage in the fact that AML researchers are always testing and uncovering new options for us.
Linda

Linda, thanks for your post! Recently, diagnosed with AML, 68 yo male, currently chemotherapy with pills, 2-weeks IV,. Potentially hospital discharge on Thursday or 3 days to outpatient therapy. Keeping PICC line for awhile, potentially stem cell transfusion or bone marrow transplant. You have made my day! I'm a health-care professional, still working as needed. Thanks for posting!

@loribmt
Yes I am. They wanted to start the vidaza again and add hydroxy and my oncologist had sent me to The Jewish General a big hospital here in Montreal to see what was going on because the last BMB she did she had a dry tap no liquid. I had done 3 cycles of vidaza and ventoclax but had to stop because my counts went down but wouldn’t
Come back up. The Jewish General has a big Lab and more highly experienced
So they asked for more blood and met with the board and my oncologist and diagnosed me with mylofibrosis in the marrow. They also talked about some kind of clone that happened after the treatments with vidaza and ventoclax. So the marrow is basically full of scar tissue crowding out baby platelets to be able to grow and red cells to survive. So the board recommended Jakafi. I have had transfusions every week for a couple of months. Red cells and platelets. My platelets run about 10 - 14 and my red cells when I came into the hospital were 50. Now they are 70! But after the bleeding I had today who knows. So the plan was to start Vidaza infusions 7days +3 they call the treatment and add hydroxy to the mix. So I will be taking all 3.
But I came down with this bug or bleed and I had a ct scan. They saw some colitis and I already have diverticulitis. I took at home for the first time Imodium 2pills to start with and then you take one as needed. Well then I felt weak dizzy couldn’t stand up so my son took me to the hospital and I am on different antibiotics for infection and I might have a bleed higher up the ct scan that isn’t showing. They tell me to hang in there and we’ll
See what they decide. As long as I have no pain I am ok.

Oh goodness, @jacklyn. You’re really in a tough spot right now with such low blood counts. I’m sure you’re feeling pretty miserable. The diarrhea with bleeding sounds quite frightening! Are you in the hosptial for this?

I am so happy for you. Right now I am fighting some kind of bleed in my upper stomach. I can’t have a colonoscopy which I had about 4?yrs ago. And to put a camera down my throat. Could cut something and causes bleed. My red cells are 7 white cells went down a bit platelets 10. I have had 5 bags of hemoglobin and 3bags of platelets that are a match. Now I have diarrhea and my poo is black with blood running through it when I see it in the toilet with the water. They want to clear this up (how) and start chemo infusions and hydroxy