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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Aug 26 12:21pm | Replies (395)Comment receiving replies
Hello everyone! I was diagnosed 3 months ago with pv and secondary eryth(not sure how to spell it). I have been doing phlebotomy once a month for 3 months. Started with 300 CC and now at 500 CC since my numbers are still climbing. I tested negative for Jak2. I am so confused as to what to ask my doctor or how to move forward. I have not had bone marrow biopsy, but I have all the symptoms of PV. My big toe kills me on both feet. My skin is flushed on my face and arms. I am so fatigued and keep a headache. I have shortness of breath. I am seeing lung doctor and heart doctor this month. My journey started with a tumor on my spinal cord in Feb that could not be completely removed. My back pain has not improved and my doctor checked my CBC for 3 months before referring to oncologist. No one tells you anything really - and I feel a little lost. Any advice on the Jak2 neg and my numbers not responding with phlebotomies? Also what is normal on the phlebotomy? Sorry this is so long...what questions should I ask my doctor? Help....
Replies to "Hello everyone! I was diagnosed 3 months ago with pv and secondary eryth(not sure how to..."
Hi Tiger, I cannot stress enough that you must see an MPN specialist. I am a patient of Dr. Camoriano at Mayo Phoenix, and I love him. But, there are many others around the country who are equally as informed. I have been on interferon for 11 years. If you do some internet research, you will find many resources. Best of luck!
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It is common for the blood numbers to take awhile to improve. I am Jak2 positive as about 90% of people with one of the 3 MPNs; you are in the 10%. Glad you are in the oncology department as that is where you will have the best advisors to discuss your options.
Once your numbers are in line hematocrit less than 45 they consider you more stable. Ask what numbers your doctor is using as indicators, what numbers are outside of the normal ranges and do research on what those are showing. Platelets, MCV, RDW, hemoglobin etc. Have they checked your blood pressure and/or spleen and liver sizes? Common for high blood pressure as well as low hemo and high platelets if you have low MCV numbers your red blood cells are small and immature common, if you have an enlarged spleen it can remove additional red blood from your system removing hemo further reducing that number. I took my second dose of Pegasys this week with little side effect. It is expensive especially without drug coverage, but something to discuss besides HU. Stay as positive as you can, be your own advocate and you can live a long time fighting the good fight!