I was diagnosed with AML in March 2023. I am having my treatment at home, cytarabine and venetoclax. Just finishing 3 rd cycle. Anyone else on this drug combination? Am feeling a bit isolated.
My father is on the same regime as you and is also severely neutropenic. His white blood cells and platelets just don't seem to be recovering despite also being in remission. Have your doctors said anything to you about how your bloods should recover?
Hi, it’s taken 6 weeks for my neutrophils to recover after the second round of venetoclax. My platelets dipped but I didn’t need a transfusion, but my neutrophils were at 0.01 for 3 weeks. They started rising in week 5 and in week 6 were 1.2. I’m having a bone marrow biopsy this week before starting round 3. The medical team seemed to think it wasnt out of the ordinary for the neutrophils to drop so low and take time to recover. They said they’ve known it take longer, particularly in older patients (I’m 54).
hope this helps and your dads numbers start rising soon
My wife was diagnosed with AML on March 24th and is now on her fourth and final cycle of chemo. Each cycle has involved 4-5 weeks of inpatient care followed by 1 weeks respite at home. The last two cycles have been brutal with high dose cytarabin and 2 weeks of myrostorin. On each occasion it has taken longer for her neurophils to return to a safe level for discharge which in Karen’s case was 0.5. She is aged 55. We were assured that the time to recover increases after each cycle due to the build up of Chemo in the body. There is an injection that can be given to boost the neutrophils but our consultant is reluctant to use this as it is much better for the body to do this without assistance. We have ride to learn (and failed!) that patience is needed for the treatment of AML. The exhausting effect of the treatment is seriously debilitating.
Thanks so much for your reply. I'm wondering if it is the build up of the drugs in my dad's system that is making it take so long. He's had 6 rounds of chemo now and it seems to be taking longer and longer to recover. Also he's 81, so if age is a factor that could explain it too.
I really hope you get some good news from your biopsy. It's a horrible rollercoaster you're all on.
Hi Tahkah thanks so much for your reply. I'm really sorry to hear about your wife. You are right, we all need so much patience for this! But it's reassuring to hear that you have been told the time it takes to recover each time increases due to the build up of the chemo in the body. Dad is about to have round 7, so that's a lot of drugs in him! We will discuss with the consultant on Wednesday and hopefully he will say the same, rather than it being anything more sinister, although still unpleasant.
I keep everything crossed for you and your wife. It's such a horrible thing to go through.
I am on my 5th cycle now of cytarabine and venetoclax. I have to take 400mgs of venetoclax because I reacted to the antifungal medication. Am finding it really hard. Bloods seem ok so far but having a lot of nausea, bone pain and weakness. Not sure I want to continue with this medication but will see the consultant when cycle is over. Anyone else going bigger dose of venetoclax hard
