Essential Thrombocythemia: Looking for information and support

I had an appointment with an oncologist, MD, to evaluate the results of my bone marrow biopsy. The diagnosis is final - acute myeloid leukemia. My family and I will discuss what I want to do next. A cure is not an option, however, there about three treatment plans to consider; she explained these in detail including the many possible side effects. So, any comments will be most welcome. I will make my decision at my next appointment on June 8. Thanks!

I am on Hydroxy urea since early 2019. Platelets count fluctuates. So does the dosage of Hydroxy urea. 500 mg daily and additional 500 mg on alternate days. Aspirin 75 mg and antacid to keep gastro intestinal track in check is regular medicines. Physical activities throughout the day is must. A minimum of 10000 steps a day keep the blood flow normal. Plenty of water, about 4 liters helps in haemo-digestion of extra platelets I guess. Staying away from toxicity is most important as we can't afford to get sick with other chronic illness.

Good morning, @crhilston. In another reply you wrote that you’ve recently found out you have acute myeloid leukemia (AML). I also had this diagnosis 4 years ago. I’ll be honest with you, this one is a bugger.
I think this informational article from our Mayo website will help explain what’s happening with your blood better than I’m able to do… Here’s an excerpt:
“Your bone marrow produces blood cells. Acute myelogenous leukemia occurs when a bone marrow cell develops changes (mutations) in its genetic material or DNA. A cell's DNA contains the instructions that tell a cell what to do. Normally, the DNA tells the cell to grow at a set rate and to die at a set time. In acute myelogenous leukemia, the mutations tell the bone marrow cell to continue growing and dividing.

When this happens, blood cell production becomes out of control. The bone marrow produces immature cells that develop into leukemic white blood cells called myeloblasts. These abnormal cells are unable to function properly, and they can build up and crowd out healthy cells.”
https://www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/symptoms-causes/syc-20369109
While no one can predict your life expectancy with this diagnosis, what I can tell you is that once the abundance of defective, immature cells start outnumbering the healthy cells, if not treated, this condition can develop rapidly.
Taking into account your age, your hematologist may feel that some of the more aggressive treatments aren’t appropriate. But you may want to ask about potential chemo treatments or abrogating drugs that can slow the progression of the proliferating cells.

Illnesses like this can come with a lot of questions so please, don’t hesitate to fire away if anything comes to mind that you’d like to know. I’m here for you anytime.
What has your hematologist discussed with you?

I was misdiagnosed at the VA Hospital on Long Island with ET in early 2018. I asked the Hematologist when she would perform a bone marrow procedure. She said, “no need for a bone marrow procedure because I know exactly what’s wrong with you and I know exactly how to treat ET.” Her problem was I’m a MIT Researcher and I know you cannot diagnose any type of blood cancer without a bone marrow procedure and a molecular panel or genetics test. So I contacted Sloan and had the bone marrow procedure, molecular panel and a genetics test done. My final diagnosis in 1998 was MDS/MPN-RS-T. Sloan has seven cases of MDS/MPN/RS-T. Most hospitals have no cases because this sucker is extremely rare. It appears my blood disorder is mutating because my immature white blood count is running at 9.5% of my white cell count. So not looking forward to a stem cell transplant. Hopefully, that will not happen. I have the JAK2 mutation which is common in MDS and MPN disorders. I also have the SFB31 and SRSF2 splicing gene mutations. I understand it’s rare to have both the SFB31 and SRSF2 mutations.

My platelet count has been normal for the last 4 years with my current dosage of Hydrea. My Oncologist at Sloan thinks I’ll need another bone marrow procedure in the near future because my immature white cell count is elevated but he doesn’t appear to be overly concerned YET. And I’m not worrying about it until he says I have something to worry about.

Hope your blood disorder stabilizes.

I also have MDS/MPN with RS and T.

My platelets shot up to 1,100 in March. Started taking HU 1000 mg a day 7 days a week.

By May my platelets were down to 300. I'm now taking 500mg every other day.

I haven't felt any side effects and am glad the HU worked so well as it is the treatment with the least number of side effects.

Good morning, @crhilston. In another reply you wrote that you’ve recently found out you have acute myeloid leukemia (AML). I also had this diagnosis 4 years ago. I’ll be honest with you, this one is a bugger.
I think this informational article from our Mayo website will help explain what’s happening with your blood better than I’m able to do… Here’s an excerpt:
“Your bone marrow produces blood cells. Acute myelogenous leukemia occurs when a bone marrow cell develops changes (mutations) in its genetic material or DNA. A cell's DNA contains the instructions that tell a cell what to do. Normally, the DNA tells the cell to grow at a set rate and to die at a set time. In acute myelogenous leukemia, the mutations tell the bone marrow cell to continue growing and dividing.

When this happens, blood cell production becomes out of control. The bone marrow produces immature cells that develop into leukemic white blood cells called myeloblasts. These abnormal cells are unable to function properly, and they can build up and crowd out healthy cells.”
https://www.mayoclinic.org/diseases-conditions/acute-myelogenous-leukemia/symptoms-causes/syc-20369109
While no one can predict your life expectancy with this diagnosis, what I can tell you is that once the abundance of defective, immature cells start outnumbering the healthy cells, if not treated, this condition can develop rapidly.
Taking into account your age, your hematologist may feel that some of the more aggressive treatments aren’t appropriate. But you may want to ask about potential chemo treatments or abrogating drugs that can slow the progression of the proliferating cells.

Illnesses like this can come with a lot of questions so please, don’t hesitate to fire away if anything comes to mind that you’d like to know. I’m here for you anytime.
What has your hematologist discussed with you?

I am 92 and just three weeks ago found problems as a result of a routineCBC. My platelet count is 10, hemoglobin 8.9, white cell 3.0, red cell 2.6, hemacrit 28. At my age, what is my new life expectancy?

I am 59 with MDS. My platelets were bouncing around under 100 after BM transplant.
Doctor ordered 50mg daily PROMACTA tablets and platelet counts went up significantly in a few months.
God bless you. Take comfort that God is in control and all things are possible with Him.