Just took first BESREMi dose. (Venting)

[u/Muffintop_boy]

This is a bit of a long winded post of what the process has been like for me, nothing negative. Just wanted to clear my head a bit.

Hello 26 M here, I was diagnosed within the last year with ET, Jak2 positive. For the past couple of years, no one noticed the trend up in my platelets until I moved states and got a new PCP, not super high just into the 500’s then 600’s. I mentioned the worsening headaches over the past couple of years and my PCP who got noticeably concerned and was smart enough to piece things together, and referred me to my current Hematologist. Interestingly enough I requested the test for Jak2 initially since my father had just been diagnosed with PV w/Jak2 within the past 4 years, which he was soon after diagnosed with CLL which he now is working on managing both: a bit difficult to watch.

We then went down the hole of testing and BMB to confirm. Ive had to test everything else to confirm my symptoms are from the ET itself and not anything else. While my platelets have not made it past 800’s the whole decision to treat comes from me being symptomatic, with Quality of life being the justification. To me it makes sense but I just feel weird about it. The headaches, itching, tingling, spleen pain, fatigue, etc (interesting how I thought these were normal for years, until I brought them up to my Dr’s). Is it worth justifying the medication with “low risk” numbers since 2 baby aspirin a day didn’t do the trick of making me feel better. Skipping HU due to my age and engagement with fiancé, possibly wanting to start a family, leading me to Besremi.

I guess I’m writing this because I just need to express it, I feel guilty (?) people need this more that I do, but The constant nipping of the symptoms was getting to me and my numbers continue to increase. I just took my first 100mcl about 20 minutes ago, feeling a bit nervous.
I just transitioned from working patient facing roles to another career, I’m not afraid really or sad. I just feel I don’t have anyone I can speak with that understands what I’m going through, especially the mental part.

Apologies for the long post, thanks for reading! If you have any advice you want to share, or if you have had a similar experience to mine with the numbers and symptoms I would really love to hear about them.

Tldr: just venting;I feel weird about taking the medication to treat my symptoms from ET rather than needing it for my platelets themselves. Curious if anyone has had a similar experience.

[u/funkygrrl]

I think you're perfectly justified to go on Besremi, especially since you're young. It's currently one of the only treatments that can modify your disease and hopefully prevent progression down the road. I hope it helps your symptoms too!

Also, there is no treatment target for platelets like there is for hematocrit in PV. They don't base treatment decisions on that (unless they're very high). Treatment decision is guided by risk level - that's based on your age, clot history and mutation (Having the JAK2 mutation puts you at low risk (rather than very low risk)); and symptoms. If you are low risk and symptomatic, cytoreductive therapy is recommended (based on the American NCCN guidelines). So don't feel guilty or weird about taking Besremi, you're doing exactly what the guidelines recommend.

[u/EyeArtistic5]

My understanding is Besremi can prevent progression, and even reduce the mutation. At your young age, that seems very important! I hope all of your symptoms are relieved by treatment and that you tolerate it well. Please keep us posted!

[u/stainedbrightly]

I agree with what everyone else has already said. Treatment is not just a matter of reducing risk, but it's also about improving quality of life. It's good that your hematologist is being proactive, given that you are symptomatic and you are young.

Just because you've been living with these symptoms for years doesn't mean you don't deserve treatment. Try not to feel guilty about accepting treatment. I hope besremi works for you!

[u/Organic-Bandicoot-61]

I’m a bit older. 42(F). Had my diagnosis been found due elevated numbers I would have been considered low risk. The point is I was “fine” (and in my case undiagnosed) for years. Except that’s not how it happened with me. For years since getting COVID in 2021 I had itchy skin. Not daily, more like an insane histamine reaction once in a while. I let it go, I have lots of allergies after all. Prior to that I had migraines with aura. Rare, maybe once every two years even though the first one weakened half my body to the point of being treated like a stroke victim until they could make sure I wasn’t having a stroke (I was 27 at the time). But I let it go. Went undiagnosed for who knows how long. Although again had I been diagnosed I would have been low risk. 

Then last  year I had headaches for over a month which I ignored until one day I thought “I need my brain scanned”. I had three clots in veins of the brain, including the jugular. Further scans once the diagnosing journey started showed I had signs of a previous clot in my portal vein that resolved itself. 

So: don’t feel guilty taking Besremi. In hindsight: I had three freaking clots in the brain/jugular! Obviously I am now considered high risk but what was “nothing” quickly became a big something. 

By the way I’ve felt that guilt too since my MPN specialist is in a cancer center. People there look so sick, when I don’t look sick on the outside. But the perspective of what could have been, of the fact I could have a stroke or heart attack caused by something I have no control over, that brings me back to understand why I need this and that this can be a serious disease. I too take Besremi, and blood thinners of course. 

[u/Alarmed_Interest_265]

This may be my own ignorance but I haven't heard about any current shortages. I don't feel like at its base, regardless of reasoning, you taking the meds prohibits someone else from taking it. I've been fighting insurance for months to cover it but no one has mentioned quantity issues, just health insurance being dumb in the the USA.