AML, age 78, taking Decetabine/ Venetoclax, no transplant

Hi @terdor. Well, that’s some pretty encouraging news about your husband’s PSA results! I’m sure that goes a long way in boosting his morale!
I think he was going to be changing up his treatment for AML from Vidaza alone to Decitabine/Venetoclax. How has that been working for him? Has he been able to get by with fewer transfusions?

74 with aml ..had five.cycles of vidia and po meds every day..how long did it take you to get into remission

Would like to know it took you to be remission..I am doing the same meds as you ...anyone information would be helpful

H,Sorry for the delay in responding. I am now getting treatment every 5 weeks instead of 4. Now on 3 days of dacigen infusion instead of 5. That week I take Venetoclax 100 mg for 7 days. I am in complete remission according to my bone marrow biopsies which they do every 6 months and weekly blood work.
Let me know if you would like more info. I wish you well on your AML journey.
Linda

Hi, I forgot to say that I went into remission after my first round of treatment.
Linda

Thank you for the reply. My blasts went from 40 to 30..I was disappointed..I take venetoclax 100mg daily and vadia infusion every month.f5 doses into abdomen ow did you feel when you went into remission ..I hope I can achieve remission soon
Thanks again for your reply and havr a great weekend

@loribmt Hi Lori. I was diagnosed with AML recently. It progressed from MDS which I had for 9 years watch and wait then to CMML and nowAML. I did have some blasts so my oncologist put me on the 7+3 chemo
Infusions vidaza and ventoclax. After the first cycle I went into remission. I continued to cycle 2 but had to stop
In cycle 3 because all my counts plummeted. Especially my platelets. I must have had at least 6 bags of platelets to no avail. They are 19. The I had to take 2 shots 3 days apart of graftosil. I don’t know if it is coincidental but I started getting terrible pain in my lower back to my legs. My legs having more pain. I have Been off treatment for 4 weeks. My oncologist did a bone marrow biopsy and could get any liquid out for the aspiration. She did get a piece of the Marrow and will
Send it to two of the top hospitals here in Montreal. Tylenol helps the pain but it doesn’t always last to 4 hour and then it takes an 1hr for it to kick in again. My oncologist is sending me for a ct scan. I have previous fractures of the L 10,11 12. Then
After a bad fall on
My back later on
I fractured my L1 and L5. The pain was do bad for 4 months. I was put on morphine and Lyrica. The Lyrica interacted with my antidepressant and the then that familiar anxiety started as well. I had been fine for 16 years in my antidepressant. It got so bad I attempted suicide. I also had pericarditis water around my heart which I would have died in 3 days had I not been put in the hospital
I have an amazing team
In oncology but because of my pain they sent this pain management doctor who put me on morphine and said I could take it every 2 hours. She also said you can increase your clonazapan which I take twice a day at .5mg. She then
Said she had something she could subscribe that I would definitely sleep. I sleep fine.
Anyway I called the oncology pharmacy and the girl who I know told me know commit take morphine every two hrs. This is what happened before when I was in the ER they added the Lyrica while I was already on morphine and I take an antidepressant a high dosage venlaflxine 225mg (Effexor Xr). I took the morphine yesterday and it did nothing. I don’t know if it is because I was on it for 4 months last year and had to wean myself off of it when I didn’t need it anymore. I am very scared now because something that started out good the first cycle is now not looking good at all.

Oh golly, @jacklyn! You are in a world of hurt right now, my friend. I’m so sorry you’re having to deal with so much pain and uncertainty right now!
One thing I might be able to help with…besides moral support. ☺️ You mentioned that you’re receiving Graftosil injections. It’s a form of filgrastim which is used to force neutrophil production. (Help you avoid infections while your blood numbers are low) As your body cranks out massive amounts of blood cells, that can cause incredibly painful pressure to build up in the bones until the cells leave the bone and “scatter to the wind” in your blood stream. I went through that myself. It was the worst pain in my life and morphine barely touched it. I was hospitalized at the time being treated for AML and in-patient for 5 weeks. So the first time I had the filgrastim, I was in the hospital yet recovering from the first round of intensive chemo.
The pain started a day or so later in my back, legs and just kept escalating. I finally told my chemo nurse and she knew right away what I was dealing with. She checked with my oncologist then gave me morphine and a Claritin gel cap. The morphine did nothing but about an hour later the Claritin kicked in and was a miracle worker.

I’d had several more rounds of chemo so after that first time, I was instructed to take Claritin (Loratadine) daily for 10 days starting the day of the injection. (Not Claritin D). That helped control the pain for me from the filgrastim reaction. My oncology team routinely recommends this during treatment. It may be worth a try for you but ask your doctor first.

You’re going through a scary time right now, Jacklyn. I’m here for you as a sounding board, a shoulder or commiserating friend. ☺️ Your medical team sounds very supportive and working to find the sweet spot in treatments for you. But the bone pain, that is the worst and makes this all feel so dreadful…so hang in there! See if you can try the Claritin. Will you let me know how you’re doing, please?

@tampakaren how are you doing..I have aml and taking chemo drugs.i also have the mutations

I know this was an older post but I would like to know how you are doing...I too have aml and take vidaza and vencllecta..I am in remission but not molecular remission..looking forward to hearing from you....best wishes