Constant Worry - It's Me Again

[Mtnlife]

So, I reread the bmb report after speaking with my hematologist last week. The diagnosis favors ET taking into account the differential diagnosis of PMF and early PMF. However, mild to moderate bone marrow fibrosis is noted.

I sent a message to my hematologist through the patient portal and received a reply. She says the biopsy showed fibrosis but not enough to warrant a diagnosis of overt PMF. She says pre-PMF could still be a possible diagnosis but ET is favored. Her treatment recommendations at this point are the same regardless of diagnosis.

Now I am worried. Wouldn't this finding mean that fibrosis will progress? And how quickly? I see that others on this site have the ET diagnosis along with bone marrow fibrosis so I would love to know how they are handling the disorder.

I am trrying to stay calm but this is just so much to wrap my head around. And the fact that the only cure is a SCT (would a patient in their 70's even be eligible?) makes it even harder to cope with.

Thank you all for being here. I do not know what I owuld be doing without this forum.

Beth

[saltmarsh]

Beth - I am 75 and was diagnosed 3 years ago with Jak-2 gene mutation and PV. Trust me when I say you will do fine. This is a journey with some bumps and a few detours but in all likelihood you and your doctor will settle on an approach that works for you. There is an abundance of great information on this forum. It may take some time to mentally wrap your head around this diagnosis but don't expend too much effort on it. Keep on posting. We're all learning here. Best wishes. Saltmarsh

[lakeview65]

I know exactly how you feel, I had the same worries . Diagnosed July of 2021 with ET, jak2 positive. After I had my BMB I was in a panic, I looked at my patient portal before my hematologist appt. It stated I have 1plus fibrosis. The Dr said ET and I really questioned him about the fibrosis. I was worried about pre-fibrotic MF. I then made an appointment with a MPN specialist and they reread my BMB and seemed to downgrade the fibrosis but said basically “treat as ET but watch for signs of other”. I live my life with ET, very active and try not to dwell on the unknown because I can’t really change what will be. Try not to stress too much, that isn’t good for us either.

[katiewalsh]

hi. I was basically diagnosed with the same thing in early 2014. Since then I’ve had no adverse changes to any of my blood counts other than getting my platelets controlled which was a positive. So no change in 9 years & my docs said at my age (then 60) I was more likely to die of something other than my MPN. Don’t even think about SCT. It sounds like that’s not in your future with test scores like yours. I know it’s hard not to worry & say, “but what if.” But reality is that it’s a waste of your time to worry. Be well! Katie

[Mostew]

I remember when i was first diagnosed it was hard to sleep as thoughts buzzing round . I found the Insight Timer App. On mobile .

There are thousands of talks , calming guided stuff to send you to sleep , etc. Etc.

Worth a look . Something to appeal to everyone I would think

Yoga Nidra sounds odd . But You don't do anything but lie down and listen .

Find one with voice that appeals . Should send you to sleep !!!!!!

[monarch5000]

Since you are in the USA and understandably worried about the future progression of ET to Primary MF, I suggest you consider trying to see a hematologist that is experienced prescribing interferon. Interferon is the only drug known to slow or stop progression. Relatively few hematologists are experienced prescribing it so many are reluctant to tell their ET & early primary MF patients about it. The cancer center below in New York City is highly experienced:

brochure

[AndyKay in reply to monarch5000]

Thank you for sharing this.

[DiveGoddess]

I too have ET with Grade I-II on BMB. Due to this forum, I sought a MPN Specialist, I go to Rami Komrokji at Moffitt in Tampa. He sees people virtually. At my second appointment he prescribed Besremi interferon. I am 57 and diagnosed 2022. Best of Luck, I worried exact same thing. Take Care

[KLCTJC]

I was diagnosed with PV over 2 years ago. I was 38 with a young child. I have had the worst anxiety until recently. It has changed my life and my whole family. I have learned to work less spend more time with family and plan for short term future. And take vacations!!! About a week ago I started Besremi. I have faith in this drug. Hoping it works and keeps me around. But my doctor at MD Anderson has never seen worried. He reassured me even at my age this will not change my lifespan. And the research in this area is booming! Just in the past 2 years I have seen 4 drugs approved for MPNs. I am still scared but I am so lucky because I feel good and I have my family and my faith. I hope this helps

[GarciaB]

I’ve gotten better at taking one day at a time 16 months ago my polysythemia Vera which was well controlled with hydroxyurea, transformed into acute myeloid leukemia . It was discovered when my body didn’t respond to antibiotic treatments for bilateral pneumonia and blood clots in my lungs. Since then I’ve been through 8rounds of chemo, a bone marrow transplant. 10 bone marrow biopsies. Many months of hospitalization.

I’ve found that prayers, positive thinking, music and Hope have kept me alive. I’m in remission. Following protocols for post transplant recovery. Still immuno compromised. But also still kicking the diseases butt. I’m exceeding all prognosis’. My doctor says it’s due to my positivity and self awareness.

This site has provided a wealth of information and helped me learn all I could about my disease. My willingness to do anything necessary and belief that I will get through this has kept me alive. Set short term goals, easily attainable. Recognize progress. Re commit when setbacks arise. You can do this!!!!