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

@loribmt Thank you for your comments.
Since the shot chemo I'm on, why don't they put people on it when they have MDS? Seems like they wait until it progresses to acute leukemia and gets into the blood. Seems like if someone has MDS that would be the time to start with the chemo before it advances or gets worse. Just curious
Couple more questions , Question #1......From what I understand I only have blasts of about 1 1/2 in my marrow, zero in the blood. why do they want to do another session of chemo? Are they trying to make the 1 1/2 lower?
Question #2...If someone gets into remission, and after a few years it comes back, can they restart the same chemo again?

@twitt1949 Hi Terry, When to begin treatment for MDS is a call the doctor makes based on each person’s individual situation. With many of the blood cancers, especially if in low risk or with a slowly progressing diseases they may hold off until symptoms dictate treatment.

From discussions with my doctors and from information sifting through articles, treating early hasn’t been shown to significantly improve outcome and every treatment comes with risks and side effects. So by delaying treatment you have a lot more time feeling ‘normal’ until chemo begins.

Check this article from Cancer.org
General Approach to Treatment of Myelodysplastic
Syndromes (MDS)
https://www.cancer.org/cancer/types/myelodysplastic-
syndrome/treating/general-approach.html

Your other questions:
“ Question #1......From what I understand I only have blasts of about 1 1/2 in my marrow, zero in the blood. why do they want to do another session of chemo? Are they trying to make the 1 1/2 lower?”

Chemotherapy drugs work by interfering with different stages of cell division. Because cancer cells divide much faster than most normal cells, they are more vulnerable to these drugs.

When someone is treated for leukemia the chemo is given in stages. In very basic terms, Induction is the first treatment where the blood is ‘swept’ of cancer cells. That’s the step you just completed.
Subsequent rounds of chemo referred to as Consolidation, where the chemo continues to ‘sweep’ up any cells that were missed.

With AML, depending on the mutations driving the disease, some of those cells may be missed by the chemo. They may go dormant and the chemo passes right by. Some of the cells may also hide from the chemo or, the cells can morph and become immune to treatment so it no longer works on them. When those rogue cells sense the time is right they may reemerge into the blood stream.
So that is why there are several rounds of chemo necessary to help ensure that all of the cells have been destroyed. Some patients are also on maintenance chemo for continual interception of cancer cells.

Question 2. “If someone gets into remission, and after a few years it comes back, can they restart the same chemo again?”
That also depends on how successful the Induction and Consolidation rounds of chemo have been. Sometimes a particular chemotherapy may be deemed no longer effective and the doctor will switch to another medication. There are continual breakthroughs with AML and MDS so the bench for meds is getting deeper.

Terry, I can’t remember if I asked this before or not, what are the mutations associated with your AML? Do you remember seeing any information such as FLT3, NPM1, IDH2 or any other mutations listed from your cytogenetic report?

@loribmt lori....Thanks for sharing your knowledge. I will ask my doctor tomorrow what mutation I have. This is probably a very loaded question but is there much difference between them? I assume some are worse or better to have than others? I tried the link you send in the last message but it don't work. They are upgrading it or something.

Hi Terry. It’s really strange the link I gave you doesn’t work. I tried the link too, with similar failure. And yet, when I go to Cancer.org it’s still on their site. Hmm.

Maybe try a search on https://www.cancer.org/
This is the title of the article on the site that would be of interest to you regarding when to treat MDS.
~General Approach to Treatment of Myelodysplastic Syndromes (MDS)

In your case it’s a moot issue now but basically, your doctor was following a standard guidelines for treating MDS. Waiting until symptoms warrant treatment because starting earlier hasn’t shown to have a significant impact on outcome. Delaying treatment saves patients from medication side effects…weighing how patients are feeling with symptoms vs how they’d feel during treatment.

Your question about mutations. Yes, there can be significant differences between mutations. Some mutations can make blood cancers more aggressive, challenging to treat and more likely to relapse after treatment. Knowing the mutations can help our doctors to find the best drug to target directly. There have been so many amazing advances in blood cancers over the past few years.

Hi Again...I went and had my first chemo shot today and I asked my doctor about what mutations I have.
He said I have SF3B, RUNXI, PTPNII. I am having a hard time reading his writing, The only thing I'm not sure about is the I, II in each mutation. The doctor said he was more concerned about one of them but I don't remember which one.

white blood was 1.9 now 2.8
RED blood was 2.91 now 3.14
hemoglobin was 9.0 now 10.4
platelet was 178 now 183

@twitt1949 I misspoke above. This is my first chemo shot second session which I will get for 7 days.

Lori....Or anyone else......Can you tell me anything about my mutations?
The doc said I have SF3B, RUNXI, PTPNII. I am having a hard time reading his writing, The only thing I'm not sure about is the I, II in each mutation.

@twitt1949 I can share with you my experience with 2 of the mutations from my MDS journey but I am not a Dr. With MDS, SF3B1 is considered low risk; RUNX1 is thought to increase the rate of disease relapse after a transplant. I do not know anything about PTPNII. I also don't know how the mutations affect AML. You need to ask your Dr. that question. I would ask him which mutation he is worried about. Did you have the mutations when you had MDS? It looks like your blood values are improving which is great!

@janetlen Yes I am defiantly goin to ask him. From the google search on the internet it doesn't sound very encouraging. But I don't know how old the info was I was reading. Thank you for your help. Maybe someone will have some new /first hand info.

I've been on chemo shots and chemo pills since Monday, and I had another blood draw today (Fri). It has always been my understanding that blood counts will go down while on chemo. Mine didn't go down in fact they continued to go up. Whats that mean? Good, bad? Why would they not go down? Can someone please explain this?
Platelets is the only one that went down a little but still in the safe/normal zone.

white blood was 2.8 Monday, now 3.7 - 5 days later while on chemo.
red blood was 3.14 Monday, now 3.32 - 5 days later while on chemo.
hemoglobin was 10.4 Monday, now 11.1 -5 days later while on chemo.
platelet was 183 Monday, now 173 -5 days later while on chemo.