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

Thank you.
My Onc/Hem feels that the SF3B1 mutation they found in my BMB in Dec has been there all along and is responsible for my numbers seldom (if ever) getting up into and staying in the normal range. He thinks that my FLT3 and NPM1 mutations were so pronounced for AML that they didn’t see or care about the MDS mutation (my words not his). Now that my AML is in deep remission the SF3B1 mutation is being addressed. The INQOVI literature states it may take up to 4 cycles before numbers improve. I have had 2 cycles so far.

@janetlen I'm in my first session. I had the chemo shot starting 2 weeks go, been off chemo (Vidaza ) about a week. From what I understand the pill Acyclovir is Anti fungle or anti virus, or some other anti infection. If I understand my doctor correctly, he wants me to keep taking these Anti pill to fight off any infection while my white blood cells are so low.

@sonieaml Be very careful with Levaquin. I have known runners who were on that for whatever reason, and it snapped their Achillies tendon.
I was on it for a lung infection over a decade ago and after three or so days all my joints were popping. Went back to doc and told him about this so we took a different route and the popping subsided a few days later.
Horrible stuff for our tendons. Be careful.

Thank you! I am going to tell my Hem/Onc the next time my neutrophils get below .500 I will sequester myself in my home for 7 days rather than be on Levaquin!
All of my joints hurt and where I had my TKA the shooting pains are sometimes unbearable.

@twitt1949 Yes, I understand why you are on Acyclovir. I have been on it quite a while for similar reasons. I was asking @katgob why she is still on it after 2 years Post Transplant. I had hoped to come off of it in a few months, but that may not happen now.

I was told i would be on it for 2 years. I am just asking in the portal how long i am taking it. You reminded me to ask.

It is the only pill after transplant. I have mentioned I was in a research study to prevent GVHD. It worked, as if today i have not had any.
But as i told someone today who said a friend is "cured from pancreatic cancer'. I do not use cure. I live each day and do not worry it could come back. So, i come here, where we support each other. BMB and BMT are being done more often. We are part of the group that know and understand.

@katgob good to know the Dr's might keep people on Acyclovir a bit longer.

I was doing so well. I had 2 bouts of GVHD. I got through that and was "sailing" through transplant recovery. I was disappointed when I hit the major bump. I was starting to feel more normal. I hope the next step turns out to be only a minor bump. To my knowledge only @dwolden provided updates on DLI on this site. I am encouraged by her response. I need to do research on some other sites.

@katgob and @janetlen. It’s been a while, but if I remember correctly, I had to take Valacyclovir for 2.5 + years until I completed both shingles vaccinations. After that I think I had to wait a few months to make sure the vaccine had time to become effective.

Just so everyone knows I'm a 77 yr old male.
Well I had another blood draw/test yesterday. The previous test was Friday 3 days ago. I've been off chemo shots for about 1 1/2 weeks ago. As of yesterday, platelet count is down a little but the red, white and hemoglobin were up a little. The nurses said that is good as the marrow is starting to produce the good cells , now that the chemo should be out of my body. I have my next blood draw Fri in 3 days. That should tell if counts are still going up. Fingers/toes crossed

@loribmt
Because of the posts here, i entered in my portal as i asked about my acyclovir refill how long i am taking it. I got the reply to my post the next morning that the dr wants me on it for 2 months past my last MMR vaccine. I also posted back because of the chimerism talk here, that my blood has remained A+ and no one was concerned, but i am. Is my chimerism still 100%? I said i do not know enough and i want them to tell me about my results. This gives them time to add a blood test or two before the 23rd of October.