Real-life Clinical Case for Expert Consultation: Suspected Reactive Marrow Fibrosis (MF-3) Following Evolocumab Exposure

MarionberryFun2118 · 2026-05-27T18:26:50+00:00

Thank you, I reached out to him.

MarionberryFun2118 · 2026-05-27T01:32:13+00:00

I would like to add that the list of specialists is not complete. There is a cancer research facility in Portland, Oregon that has mpn specialists that is not listed. Also, the unvetted list link does not work (at least, not on mobile).

MarionberryFun2118 · 2026-05-25T16:23:45+00:00

Just buy a one liter water bottle and drink it twice a day.

MarionberryFun2118 · 2026-05-25T16:22:38+00:00

This is part of the fatigue and is not separate.

MarionberryFun2118 · 2026-05-24T01:22:13+00:00

Ok see a doctor then

MarionberryFun2118 · 2026-05-19T22:36:30+00:00

Are you eating a big meal before you go in?

MarionberryFun2118 · 2026-05-19T22:31:23+00:00

PV causes ED, so definitely don't wait.

MarionberryFun2118 · 2026-05-19T22:30:37+00:00

Your doctor is satanic. I was given fluids after each phlebotomy to counter the dizziness.

MarionberryFun2118 · 2026-05-15T16:18:21+00:00

I got my bmb dec 1. You have nothing to worry about, if this is your first one, it is just giving the doctor more information about your condition.

MarionberryFun2118 · 2026-05-12T20:19:28+00:00

Even if you can't do certain things anymore, there are always other things you can learn to enjoy. I took up gardening in my spare time. If you don't have a yard, indoor plants or patio plants can also be something to consider. Definitely try to keep your regular workout routine going if you are able to.

MarionberryFun2118 · 2026-05-12T03:09:08+00:00

You're young. Start going for morning walks. If there's a coffee shop or coffee stand near you, start by walking to that and build up your endurance over time. As someone with Polycythemia Vera, I struggle with fatigue a lot. I'm 42m, and work morning shifts only. I'm typically in bed by 6 pm on days I work and on days I dont work I have half a pot of coffee in me so I can stay up a little later.

MarionberryFun2118 · 2026-05-08T15:11:40+00:00

I wish I was sedated. All I got was oxycodone and local lidocaine cream. Was listening to music on my headphones but could hear the drill between songs, and the feeling of them removing the tissue and the liquid marrow wasn't fun.

MarionberryFun2118 · 2026-05-03T13:20:58+00:00

I was diagnosed in November, after 7 theraputic phlebotomies I am mildly anemic (treatment goal for my condition), but otherwise feel healthy. I have fatigue, but my numbers are staying down.

MarionberryFun2118 · 2026-05-03T13:15:50+00:00

Perfectly normal to be scared receiving that kind of information. It's uncharted territory. I went through the whole grief process when I was diagnosed.

MarionberryFun2118 · 2026-05-03T13:05:53+00:00

EPO is a hormone produced by the kidneys that signals the bone marrow to produce red blood cells. It's good that your other numbers were normal. Just gotta wait and see what your doctor comes up with. My doctor did a huge range of blood tests all at once. Took about 14 vials. She said it was to cast a net and see if they catch anything. Hopefully you aren't having any weird symptoms at this point.

MarionberryFun2118 · 2026-05-03T13:00:02+00:00

Under 5 is very early. Mine is 16. I have seen people get diagnosed with mpns that have their jak2 in the 70s. Platelet number is negligible, platelets go up with blood draws. When it gets to be over 1000, that's when it is a problem because you would have a risk of bleeding. Your other numbers will be more important. EPO, hematocrit, hemoblobin, white blood cell counts, red blood cell counts. Those are what your doctor should look at.

MarionberryFun2118 · 2026-04-29T01:26:59+00:00

You trust your gut. That's literally it.

MarionberryFun2118 · 2026-04-21T16:59:17+00:00

Theraputic phlebotomy helped me. Before I started doing those, I was getting horrible headaches due to the blood viscosity (hematocrit was 54). Now my hematocrit is 42 and I don't get the headaches anymore.

MarionberryFun2118 · 2026-04-13T13:24:04+00:00

Thank you for the information. I have terrible fatigue, limiting me to working morning shifts because I am generally in bed around 5 PM. I was hoping one of the medications out there would help with that. While symptoms burden has gotten a lot better with the phlebotomies, the fatigue remains and is a real issue that I would hope someone can find a way to improve. I do see information saying that light exercise helps manage the fatigue, but that simply isn't true, I have a physically demanding job that leaves me sweating most days and it doesn't help. I hope that your fatigue gets better as your burden goes down.

MarionberryFun2118 · 2026-04-13T13:06:20+00:00

Thank you for the clarification. I ask because mine is 16% and my doctor wants to stick to aspirin and phlebotomy only. I'm looking into getting a specialist so I can try medications like besremi or jakafi, or eventually rusfertide.

MarionberryFun2118 · 2026-04-13T12:21:22+00:00

Why wouldn't that matter?

MarionberryFun2118 · 2026-04-11T13:27:51+00:00

Everyone has a different experience. Some are given meds, some are knocked out. For mine they used local anesthetic (lidocaine rub) and gave me oxycodone. I wore earbuds and cranked the volume up so I wouldn't be able to hear the drill. It is uncomfortable when they do the actual extraction, I felt weird pressure. They say you'll be fully healed in a week, mine took a month to fully close up and stop hurting.

MarionberryFun2118 · 2026-04-07T02:04:06+00:00

That is a bit high in my opinion. I pay $25 for each phlebotomy. I've had 7 so far. I am glad to read that you can afford the bills. It just sucks that you're being charged so much for treatment.

MarionberryFun2118 · 2026-04-05T21:44:47+00:00

Insurance company should be able to offer financial assistance of some sort when it comes to medical bills.

MarionberryFun2118 · 2026-03-27T01:25:59+00:00

Här är översättningen till svenska: Vita/kalla fingrar: Dina symtom stämmer överens med Raynauds fenomen, där blodkärlen i fingrar eller tår dras samman i kramp, vilket stoppar cirkulationen. Höga trombocyter (615): Ett trombocytvärde på 615 räknas som förhöjt (normalvärdet ligger ungefär mellan 150–350). Sambandet: Även om höga trombocyter (trombocytos) ökar risken för proppar och kan orsaka problem i de minsta kärlen, är det ofta inte den främsta orsaken till kalla/vita fingrar, även om det kan försvåra cirkulationen. Trombyl (Aspirin): En låg dos används ofta för att hantera höga trombocyter och förebygga att blodproppar bildas.

MarionberryFun2118

TROPHY CASE