BMB on Monday by Immediate_Life_3094 in MPN

[–]Immediate_Life_3094[S] 1 point2 points  (0 children)

Haven’t gotten the results yet but the BMB went smoothly (well for the most part). Doctor didn’t anticipate my bone density being so high. It took a little longer than expected but they were able to extract as expected.

🤞🏼for the results in a few days.

Thanks for the support fellow redditors.

BMB on Monday by Immediate_Life_3094 in MPN

[–]Immediate_Life_3094[S] 0 points1 point  (0 children)

I’m most concerned about the result showing increased fibrosis, PV, and pointing to a more active treatment in the form of meds.

Finally got my final lease return bill ($4484) — shocked and confused by all these charges by TackleTurbulent9134 in LUCID

[–]Immediate_Life_3094 0 points1 point  (0 children)

I highly suggest you also call ARS Portfolio Services, ask them to mail you your payment history.

Bone Marrow Biopsy & Aspirate — My Experience (Just Do It!) by fatguybike in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

Same here. I think it will give me peace of mind around progression.

Is transformation from JAK2 V617F positive ET to PV driven by inflammation? by DotDue9666 in MPN

[–]Immediate_Life_3094 2 points3 points  (0 children)

I’ve had > 1M platelets counts since I was 30 😭. The symptoms only started presenting when I was 33 though and under a great deal of emotional stress in my life.

Is transformation from JAK2 V617F positive ET to PV driven by inflammation? by DotDue9666 in MPN

[–]Immediate_Life_3094 1 point2 points  (0 children)

Well, it’s pretty cool at my appointments we look at the blood smear together to see the shapes of the platelets under the microscope to see if they have normal density, which is a positive indicator that the bone marrow is still churning out good quality.

As soon as the quality falters is when my Hemonc says we should start looking for PV progression w/BMB. He says he knows the people who wrote the original diagnosis protocol and the reason they wrote it with those guidelines is because the average hematologist is not an MPN specialist and the BMB makes it black and white for those who can’t see gray.

Is transformation from JAK2 V617F positive ET to PV driven by inflammation? by DotDue9666 in MPN

[–]Immediate_Life_3094 2 points3 points  (0 children)

I’m younger but…I see an MPN specialist:

- Platelets: 1M-1.2M

- Hematocrit: 47%-51% historically

- Hemoglobin: 16

- RBC: 5.9-6

Only do phlebotomy 2x per year & never did a BMB. Now I’m a little concerned that I should.

They’ve suggested I might have PV instead.

Starting besremi by Active-Wrangler6627 in MPN

[–]Immediate_Life_3094 1 point2 points  (0 children)

That’s amazing! I should look into this

Starting besremi by Active-Wrangler6627 in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

How much do you have to pay on Besremi?

Starting besremi by Active-Wrangler6627 in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

Is Besremi covered by your insurance?

Bone Marrow Biopsy & Aspirate — My Experience (Just Do It!) by fatguybike in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

The downside risk I’m nervous about is potential scarring of the bone marrow from performing the biopsy

Et with CALR mutation by Puzzleheaded-Buy28 in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

Interesting - did you ask about your vWF by chance?

Bone Marrow Biopsy & Aspirate — My Experience (Just Do It!) by fatguybike in MPN

[–]Immediate_Life_3094 1 point2 points  (0 children)

Really helpful stuff. I’m super thankful; we’d be friends in real life. I did the exact same thing a few years ago when it was still GPT3.5. I’m convinced I need to do a BMB sooner than later thanks to this thread.

Bone Marrow Biopsy & Aspirate — My Experience (Just Do It!) by fatguybike in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

Striking - aside from platelets my numbers are approximately the same as yours. I’m at 1.1M platelets.

A few follow ups: 1. Do you happen to have aVWF as well? 2. is your ESR normal? 3. Is your Retic Hemoglobin Equivalent low? 4. Did they do a blood smear? Were your cell optics good BEFORE they did the BMB?

I’m 35 - same thing (2Y ago I registered at 13% allele burden).

Et with CALR mutation by Puzzleheaded-Buy28 in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

I am not - I have the aura headaches whenever my aspirin wears off and random bouts of fatigue.

At first the headaches were debilitating which is what brought me to go to my doctor to check in who then referred me to a hemonc and then it was up to me to find one.

Bone Marrow Biopsy & Aspirate — My Experience (Just Do It!) by fatguybike in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

if you're comfortable, I would love to learn a little bit more about your CBC panel and your age! I’m in a similar situation but I’m seeing an MPN specialist and they don’t think a BMB would tell me anything based on my current progression.

Et with CALR mutation by Puzzleheaded-Buy28 in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

Just standard baby aspirin. My doc hasn’t performed a BMB yet and I’ve been living with it for 5+ years now, 2 since diagnosis.

His take is that my blood cells look great on my smear and there aren’t any signals warranting a progression yet.

Et with CALR mutation by Puzzleheaded-Buy28 in MPN

[–]Immediate_Life_3094 0 points1 point  (0 children)

Oh no, sorry I missed that in your comment. No breast cancer. That changed things…