Two things going on.: I just went to see my... - MPN Voice

MPN Voice

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Two things going on.

jeanr profile image
6 Replies

I just went to see my hematologist to get the results from my March BMB- it came back suboptimal for adequate evaluation - but what can be confirmed is I either have ET or primary myelofibrosis. My current platelet count is 793.

However, my lymphocytes are just out of normal range which my hematologist believes points to beginning of lymph node cancer.

So basically two things going are on with my body.

Has anyone else had to deal with MPN and cancer?

My hematologist said to me as he was leaving - I think you are going to be alright -so that was a glimmer of hope- He's just about to retired. So I have an appt June 10 with a new Hematologist at a Cancer Care clinic.

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jeanr profile image
jeanr
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6 Replies
blulou profile image
blulou

Have you been screened for the JAK2 mutation?

jeanr profile image
jeanr in reply toblulou

Yes, and I am negative on the JAKT2 mutation. Thanks for your reply. Jean

Paul42 profile image
Paul42

Hi

Interested in what you say about lymph node cancer. Are your counts low? Mine are always just below the normal range but my haematoligist is never too concerned, he believes its because i have such an enlarged spleen that its affecting the count.

Is your spleen enlarged?

Also a 793 platelet count to me seems high for MF diagnosis, does sound like ET.

Paul

jeanr profile image
jeanr in reply toPaul42

Just had spleen checked not enlarged, my lymphocyte count is just above the top of the normal range, and although my dna is not showing cancer I was told that the high lymphocyte count might point to beginning of lymph node cancer.

Yes after I got home and did some reading I thought the platelet count was a bit high for MF- its has been fluctuating - which I queried and was told was normal.

Thank you for your reply. Jean

jeanr profile image
jeanr in reply toPaul42

What are you taking Paul and how is it for side effects?

Paul42 profile image
Paul42 in reply tojeanr

I have PV and started Ruxolitinib in January, within a few weeks i got Shingles so stopped it until i was recovered, been back on it for about 6 weeks now and no side effects so far.

Still early to tell if working, but i feel loads better, have got loads of stuff done around the house and garden that havent felt like doing for ages.

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