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I Have Grade 2 Myelofibrosis . Spleen Size Is 16.8 Cm. Doc Advised To Take Jakafi. Platelets Are 9 To 10 Lacks. WbC Are Stable.

A myMPNteam Member asked a question đź’­
Delhi, CA

I haven't started Jakafi and don't want to for some months.
Is it ok with this size of spleen.??
How fats spleen grow?
What size of alleen is significant enough to start the jakafi??

March 4
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A myMPNteam Member

Given the profile you describe, Jakafi would be indicated. While you may not be symptomatic at 16.8cm spleen size, you do not want to see continued growth, The fibrosis in the bone marrow forces the spleen to work too hard, which continues as the spleen tries to compensate for the bone marrow dysfunction.

You will need to do you own risk/benefit analysis for the use of Jakafi. What are your concerns about the risks? What are the benefits? Do the benefits outweigh the risks? While many people would say yes to starting Jakafi, you are the only one who can decide for yourself.

March 4
A myMPNteam Member

Please don't hesitate to take Jakafi. It may save your life.

March 4
A myMPNteam Member

I don’t have the exact spleen size. My doctor “measures” it at each visit by feeling my abdomen to determine how far below the rib cage it is in “finger breadths” (normally it would be completely within the rib cage). I had an ultrasound a few years back just before I was formally diagnosed, and it was 14.4cm. I know it is larger today based on the monitoring described above, but not significantly.

For blood counts: RBC is at the very low end of normal; PLT is in normal range; WBC is slightly elevated; HGB is slightly below range. There are many other blood counts that I have checked every six months, but I’m just noting these. They have all remained in these general ranges since 2021 when I was first diagnosed, so fairly stable thus far.

March 9
A myMPNteam Member

Hi WR
What is your spleen size and blood count ?

March 8
A myMPNteam Member

According to my doctor, spleen size alone is not the primary reason to start Jakafi. Size would be important if it is causing you uncomfortable pain or impacting your appetite due to early fullness. The presence of other constitutional symptoms such as night sweats and itching, would be other considerations for starting Jakafi. My spleen is enlarged but not disrupting my quality of life right now. Also, I have no other symptoms and my blood counts have been generally stable. For these reasons, my doctor is not recommending Jakafi at this time. Other doctors may have differing views.

March 8

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