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71 year old female diagnosed 6 month ago with PV

Posted by jeanette1954 @jeanette1954, Jan 30 9:43am

Currently taking hydroyurea 1000mg daily along with 81mg aspirin. Have had 4 phlebotomies. Side effects include redness on face and shins and stomach pain at times. Hair seems thinner but nothing crazy. Hematocrit has come down to 39. I feel this treatment is only addressing the symptoms, not the cause. MD doesn't feel I need a bone marrow test. All this being said is anybody taking Besremi.

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maine | @maine | Feb 12 5:29am
In reply to @eferret "I would recommend that anyone who has an mpn including PV, ET, and Myelofibrosis consult an..." + (show)
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I would recommend that anyone who has an mpn including PV, ET, and Myelofibrosis consult an mpn specialist to confirm that the treatment they are receiving is appropriate for them. Many hematologists these days have few mpn patients and are not following the latest developments in new drugs or research, so they are only comfortable with prescribing hydroxyurea.
In my case I was on hydroxyurea for several months after 10 weeks of phlebotomy. My hematologist discouraged me from looking at any other drugs. I read several articles about hydroxyurea and Besremi and the takeaway was that hydroxyurea does not do anything to reduce the cancer and can have some nasty side effects like sores and ulcers for a relatively small number of people who stay on it long term. Interferons like Pegasys and Besremi actually can significantly reduce the cancer and lower the risk factors for blood clots and progression to myelofibrosis. I went to see an mpn specialist who agreed that Besremi was a better fit for me. Since I started taking Besremi last February, my allele burden has gone from 91 to 73 and my hope is it will be under 50% in the next year.

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@eferret. You state an allele burden decrease, are you repeating the diagnostic JAK2 blood test? My oncologist was reluctant to repeat that in order to track the JAK2 percentage but I got a second one done recently. There seems to be no code for this test when done for tracking, only diagnosing.

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eferret | @eferret | Feb 12 7:55am
In reply to @maine "@eferret. You state an allele burden decrease, are you repeating the diagnostic JAK2 blood test? My..." + (show)
Profile picture for maine @maine

@eferret. You state an allele burden decrease, are you repeating the diagnostic JAK2 blood test? My oncologist was reluctant to repeat that in order to track the JAK2 percentage but I got a second one done recently. There seems to be no code for this test when done for tracking, only diagnosing.

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My hematologist has me do the JAK 2 twice a year. I will be doing it in May and November. I am hoping that there is a correlation between having a lower hematocrit and a faster reduction in the allele burden. Since changing from injecting in the thigh to injecting in the stomach and a small increase in dosage, my hematocrit went down 4 percent to 40.8.

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Colleen Young, Connect Director | @colleenyoung | Feb 22 2:15pm
In reply to @marykatherine62 "Keep asking questions. I was dx'd three months ago and I'm 64. Im getting a second..." + (show)
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Keep asking questions. I was dx'd three months ago and I'm 64. Im getting a second opinion. Keep asking questions

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@marykatherine62, welcome. How are you managing with polycythemia Vera (PV)? Did you get a second opinion?

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bracha | @bracha | Mar 1 8:31am

Bone marrow test is essential to understanding what other issues your marrow is experiencing.
It is simple and usually covered by insurance. Going forward in your journey it will provide a benchmark should you experience further complications.
I was diagnosed a year ago at age 73. The bone marrow showed TET2 and ASXL1 mutations which need to be monitored for MDS etc.
Stay positive and monitor blood monthly or so for subtle changes.

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