Anyone have information about late stages of primary myelofibrosis?

Posted by cindyem @cindyem, Apr 1 8:38am

Does anyone have a link to information regarding late stages of PMDS?
My diagnosis is primary myelofibrosis. I’m probably two years into this disease without realizing it was starting up. I feel fine. My symptoms are few, hair loss, itching, abdominal discomfort. Since I mentioned this to my family practice doctor, she ordered some basic tests and found over a year and a half my hemoglobin dropped from 15.2 mcg to 7. It was such a slow drop that I didn’t feel it happening. But, boy, I sure craved ice and didn’t mind the slow loss of weight without trying. She sent me to an oncologist affiliated with Mayo Clinic. After multiple tests including a bone marrow, we found I have PMDS with elevated platelets and white blood cells.
Since I still feel as if nothing is wrong, I can’t help wondering how the late stages of this disease will be.

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Lori, Volunteer Mentor | @loribmt | Apr 1 9:35am

Hi @cindyem, I’m just double checking your reference to PMDS. Do you possibly mean myelofibrosis (MF) or Myelodyplastic Syndrom (MDS). PMDS isn’t a blood cancer. I’ve been reading some of your previous posts to refresh my memory and see that you have a JAK2 mutation which can cause myelofibrosis, a buildup of scar tissue, known as fibrosis, in the bone marrow. This prevents your bone marrow from producing a healthy amount of blood cells.

Tossing in a little information for you below:
https://www.healthline.com/health/myelofibrosis/what-is-primary-myelofibrosis
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https://www.healthline.com/health/myelofibrosis/prognosis-and-life-expectancy
It seems premature to me to be thinking ‘end stage’ with this blood condition. There are many treatments available to slow the progression of the disease and a bone marrow transplant can be a potential cure. I have a good friend whom I met when I had my transplant 5 years ago. She had MDS and received a bone marrow transplant a few days before I did. I was 65 at the time and she was 69. We met over the months of recovery and are still in touch with each other. She’s in complete remission because of it.
Are you currently in a treatment program or have you discussed the possiblity of a transplant?

cindyem | @cindyem | Apr 1 12:59pm

Thanks for catching that. Yes, I have primary myelofibrosis. I have an oncologist that is holding off on treatment until I have problematic symptoms. I was on a medication to bring down my platelets but it also brought back my anemia so we discontinued it.

mahmoudbakry | @mahmoudbakry | Apr 2 10:28pm

In reply to @cindyem "Thanks for catching that. Yes, I have primary myelofibrosis. I have an oncologist that is holding..." + (show)

Hello ,I wish you a speedy recovery ,my doctor told me that I have PMF but not sure 100% but he is so hesitant and he is doing his best to find something to officially diagnose me as PMF .
I think we have a connection , because my doctor is also holding off on treatment "Jakavi ruxolitinib" because he told me its (low risk asymptomatic).
Since I have been following up with the doctor for the past two years, my hemoglobin has never dropped below 16, and my platelets have never dropped or risen above normal 250, and my white blood cells at their normal rate of 9 have not changed, with mild to moderate enlargement.
And my bone marrow biopsy reticulin stain grade 1_2/4 normal to mild increase.
With negative mpl,calr,jak2 mutations .
So is it your case some way close to my case ?!

cindyem | @cindyem | Apr 3 10:22am

In reply to @mahmoudbakry "Hello ,I wish you a speedy recovery ,my doctor told me that I have PMF but..." + (show)

I was originally miss diagnosed with polycythemia Vera. Because I was borderline anemic and I worked in hematology, I challenged my doctor. Yes, I had a JAK2 deletion. So a bone marrow smear studied by a Pathologist revealed Primary Myelofibrosis. Many genetic tests done on that BM sample helped classify me as low risk.
Because I have very mild symptoms (itching, abdominal pains) my doctor is not treating yet. I had been on hydroxyurea for two months to bring down my platelets, but it dropped my red cells also into the anemic range. So, at this point, I will do six month follow ups and blood testing.
Don’t be afraid to be your own advocate. Arm yourself with questions for your doctor. Some of the cancer sites have a list that you can choose from.
I wish you well.

bmarkable | @bmarkable | Apr 12 8:17am

Greetings, I don't like the idea of looking towards an 'end stage'. That sounds like disaster. I also got a diagnosis of myelofibrosis but am believing for successful interventions, without stem cell transplant. Think and act in terms of not having decline rather than toward it getting worse and worse. Even though sometimes you wonder, is this going to just creep upon me, as you watch your blood readings decrease. It's a challenge.

cindyem | @cindyem | Apr 13 8:22am

We each have different personalities. I am a retired clinical lab specialist and am very detail oriented. My disorder was caught early because I went in with weight and hair loss. Other than that I felt fine. My hemoglobin was at 7 with increased platelets. I was referred to a hematologist/ oncologist. Thus many tests lead to my diagnosis.
Reading about the disease in its entirety actually helped me to stop thinking about it. To me information is valuable.
I will not dwell on the end but plan to live my time to the fullest.

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