Update: Besremi+Jakafi Combo: I've now been on the... - MPN Voice

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Update: Besremi+Jakafi Combo

Luthorville profile image
6 Replies

I've now been on the combination since Jan 10th. Solid update. It has been 78 days since my last phlebotomy. My HCT has been 38.8 3 weeks after, then 41.1, now 43.2. So trending higher.

However, my MCV has been driving this increase and has finally become normal for the first time in years. Here's a picture of my MCV:

My RBCs continue to drop, perhaps at an even more accelerated rate due to the Jakafi. I guess I can't post 2 graphs in the same post so I'll post it as a response. In short if the MCV can stabilize soon then perhaps my HCT can stabilize soon. I've had an increasing MCV for a couple years as my body adjusts to the Besremi.

My WBC also remarkably rebounded to 3.51 up from 2.83 and my ALT and ASTs also both improved and are either just barely above or within normal range. Lymph also improved from 0.66 back to 1.00, highest reading since September despite adding Jakafi (though within the normal volatility I've seen). Neuts have held steady falling from around 3 to 1.66 back now to 1.77. Platelets 164 --> 168.

Overall, I'm optimistic I can drive improvement in my HCT and hopefully avoid a phlebotomy for some extended time. I did get a scare from the derm when I misread a mole removed that came up positive for Melan A. I thought that was Melanoma. 24 hour roller coaster. This all still suggests to me for those unable to stabilize HCT with just Besremi, a combination of both therapies appear to accelerate improvement.

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Luthorville
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Luthorville profile image
Luthorville

Here are my red blood cell counts

red blood counts
EPguy profile image
EPguy in reply toLuthorville

Continuing a good trend, but now it's from the drugs rather than phlbs. That is great.

Sheena2020 profile image
Sheena2020

Your report of all the results is very interesting. I hope it continues to improve. What is the MCV? Mine is always a little high but the doctor doesn’t seem too concerned about it.

Luthorville profile image
Luthorville in reply toSheena2020

MCV means mean corpuscular volume, which measures the average size of red blood cells (RBCs). It’s typically reported as part of a complete blood count (CBC). For PV patients receiving phlebotomies like me, the MCV is typically driven lower as iron is removed from the body. The Besremi is aiding the rebound of my MCV to more normal levels.

Normal or Low MCV is common in PV.

Low MCV can occur especially if there’s iron deficiency, which is not uncommon in PV patients due to increased blood cell production and sometimes therapeutic phlebotomy.

Elevated MCV is less common but may occur if there’s a concurrent condition like vitamin B12 or folate deficiency.

hunter5582 profile image
hunter5582

Glad to hear the combo os working for you. Great also that you are tolerating the joint meds.

ainslie profile image
ainslie

if I understand what you have written correctly it’s all going to plan , the Hct is fine as is , reds are fine and coming down nicely and MCV is rising, happy days

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