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

@twitt1949
This is a journey none of us expected. I opened Mayo, saw your post and that Lori already replied. It goes without saying that we are real people and not bots. Real experience, though seldom the same. When I had my bone marrow transplant in April of 2024 I did not research and google dive. I listened to my City of Hope team and this site. Lori was there as soon as i posted.
I go back to my watch and wait moment. October 2023. I had in the two years prior went through significant treatment for breast cancer with genetic mutations to boot. Lynparza was a pill i took that has a side effect of possible MDS. I had Brca 2 and an undefined at the time mutation found. Once i had my BMB, the TP53 gene was found to be mutated.
The head Radiology oncologist doctor had told me in early 2022, that the radiation being prescribed would likely not work on me. I have a cancer 2% of the population has he said. All in all, it may help my chance of recurrence about 2%. Possible side effects from the radiation could be lifelong. He explained all about why it is done and the expectations of how it will work. Lastly, he said, if you were my family, I would not recommend you do it. There are other treatments out there that your City of Hope oncology team will look at.

My what if was my hematology oncology doctor saying my MDS was low-med. I could wait for 3 months and take another blood test. And I could choose to be in the "Be a Match" program which would match me up with a donor. By December, i had a number of matches and one that was a 10/10 match.
I had my 1-month follow-up yesterday to receive my 2nd MMR vaccine. The CMA administering it is a nursing student at the college that i work at.
My NP was back after 6 months off for her baby. The oncology doctor gave her 40 minutes with me. Within just a few she said she was surprised i had a 2nd blood clot, and my ankle today looked swollen and i was not wearing my compression stocking. What. She asked me how i knew. I said my ankle was still swollen just like the first time. She mentioned people like me who have multiple clots often stay on Eliquis for the long term.
I filled her in on my sister, family and all going on. I had beautiful blood numbers with nothing out of sync. Glucose is a bit high, but she said that can be from what you ate the last few days. We will check it in 2 months.
I will have my yearly CT scan on my lungs to make sure anything noted before is stable or gone. I will not worry. I truly feel good. Besides some neuropathy and brittle nails, all is good for today.

Well, I've had 2 of 7 chemo shots. The syringe needle was only about 1/2 inch long and contained about 2 thimbles of milky solution, smaller than I expected. They inject it in my belly area and I only felt a small prick when they inserted the needle, but as far as pain from the chemical I didn't feel anything. Even after the second day I don't feel any different than before the chemo shots. What is nice is I'm in and out of the clinic with 30-60 mins. The only think I noticed is a little/slight red area at the injection site. They told me today that they are going do blood tests twice a week for the next few weeks or until after a few chemo sessions.
What is a little nerving is all the pills I have to take. Before the chemo I was taking 3-4 in the morning, some at noon and again at night. Now after 2 days of chemo, I don't have to take as many pills. I'm one that never like taking pills. At 77 yrs old I'm taken more pills in the last month than I have in the last 77 yrs.

Good morning @twitt1949 You were on my mind and I had planned on checking in with you. So I’m happy to see your update! So far so good with the Vidaza injections.

I can sure empathize with the amount of pills you have to take when you’re not a pill taker. I was the same way all my life. Hated to take any meds. Imagine my shock when I realized I’d have my own dedicated pharmacist on my team. 😂. “Better living through chemistry”…remember the old film strips we’d have in science class during elementary school?
Well, our bodies are meant to heal but sometimes they need a little help. So hang in there.
I know you’re receiving Vidaza injections and Venetoclax. Are you having to take any other meds as well?

Prayers for total healing!!! It happens!!!!

Does anyone know the actual dosage of vidaza..how many mg..

@bettersleep68 The dosage for Vidaza may be adjusted depending on lab results. So your starting round of chemo may be than subsequent rounds.

You’re asking what the actual dosage of Vidaza is in mg.
This is directly from the Vidaza website on their packaging insert: “Recommended starting dose for the first treatment cycle, for all patients regardless of baseline hematology laboratory values, is 75 mg/m2 subcutaneously or intravenously, daily for 7 days. Premedicate patients for nausea and vomiting.

Obtain complete blood counts, liver chemistries and serum creatinine prior to the first dose.

~Subsequent Treatment Cycles for Adults

Repeat cycles every 4 weeks. The dose may be increased to 100 mg/m2 if no beneficial effect is seen after 2 treatment cycles and if no toxicity other than nausea and vomiting has occurred. It is recommended that patients be treated for a minimum of 4 to 6 cycles. However, complete or partial response may require additional treatment cycles. Treatment may be continued as long as the patient continues to benefit.

Monitor patients for hematologic response and renal toxicities, and delay or reduce dosage if necessary.
Dosage Adjustment Based on lab results (Hematology Laboratory Values) “

As of today (Friday) I've had 5 injections of Vidaza. I don't know what the mg of Vidaza is but the syringe is about 3/8" diameter and about 3/4" of liquid. Monday is labor day so my next injection is Tues. I don't know if its all the drugs I'm taking or if it a results of blood counts going down a little. But I feel like a bag of smashed Ass_oles today. I'm ok if I sit or lay down. If I get up and walk much I start feeling bad again.
Daily pills I'm taking is 2 tablets of 100mg venclexta (venetoclax) once a day
2 tablets 186mg of cresemba (isavuconazonium) once a day
2 tablets a day, 400mg acyclovir (zovirax)ea. morning and night

@twitt1949 Hi Terry. Looks like you are almost finished with your first round of Vidaza. Though you will be continuing with the Venetoclax daily.

It is normal for your blood counts to drop now.
There is a cycle to chemo. Remember, the chemo kills the cancer cells. But it can also destroy other quickly dividing cells like blood cells. It can’t discriminate between them.

So your blood numbers will drop very low by mid-cycle. Then they will gradually recover. You should start to feel a little perkier by Week 3. Just in time for another round of chemo.

This is an important time to listen to your body.
Rest, plenty of water and eating foods rich in protein and calories are key! You will get very fatigued! Again…normal!

Watch your temperature daily. If it ever gets to 100.4 call your oncology team! This can mean a possible infection or neutropenic fever and needs to be treated ASAP.

For now, relax and enjoy the lovely holiday weather. Sending a hug!

@loribmt thank you for your help

@twitt1949 .I take 4 shots of vidaza and off a couple of weeks..the injections sites are always red and painful..esp..if I touch them..ouch...i do take venetoclax 100mg daily ..also cipro .and antiviral and antifungal..doing this for 18 months...i do think this is a life time routine...i am going to ask my oncologist to switch me from vidaza to oral pill..hope you are doing well with your treatment