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!
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....
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!
I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
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....
My 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
Hello brooks7987, I have had PV w/JAK2 for over 5 years. I started on Hydroxurea almost immediately . I am also very active outdoors and had to change some habits, sunscreen, hats, UV shirts (even in water activities) all help. I had no problems and had twice yearly checkups with dermatolgist. I have recently replaced Hydroxurea with Jakafi. Hydroxurea did sap my energy level and the switch helps.
My 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
My 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
I use an APAP machine for sleep apnea. It is WONDERFUL when utilized with a minimalistic-style mask, like a P-10 with 'pillows.' If an APAP or CPAP machine is prescribed, please do not hesitate to try it.
NB: The full-face mask was a miserable experience. You get to choose the mask when they order your device. Get the one you want!
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He is also Jak2 positive (which I should have stated). His blood pressure did come down some with phlebotomy.
Thanks!
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!
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2 ReactionsThank you!
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1 ReactionThank you!
We have not talked to doctor yet. Appointment with new OSU James Cancer Center doc not till March
I’m no Dr. but I believe the HU is prescribed first.. I was almost 67 when I was diagnosed in spring of 2021… I had 4 phlebotomies(1 per week for a month), was put on aspirin, and HU… My oncologist’s main focus was lowering the HCT which was very high… I should say that I never even heard of PV before I was diagnosed… In my case, I have tolerated the HU very well.. I currently am taking 7500 mg per week.. I am also very active.. I bike every day as long as the weather allows for it and also do a lot of walking… Long sleeves and sunscreen are a must on sunny days… Honestly, despite taking HU, I feel really good.. no symptoms, high energy, no issues.. I also understand that some people cannot tolerate HU at all… It effects people differently… Hope this helps and best of luck to you and your husband..
-
Like -
Helpful -
Hug
2 ReactionsHello 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....
Hello brooks7987, I have had PV w/JAK2 for over 5 years. I started on Hydroxurea almost immediately . I am also very active outdoors and had to change some habits, sunscreen, hats, UV shirts (even in water activities) all help. I had no problems and had twice yearly checkups with dermatolgist. I have recently replaced Hydroxurea with Jakafi. Hydroxurea did sap my energy level and the switch helps.
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Hug
3 ReactionsHi @brooks7987, welcome. I moved your question about HU (hydroxyurea) and interferon to this existing discussion:
- Polycythemia Vera: Just been diagnosed https://connect.mayoclinic.org/discussion/polycythemia-vera-1/
I did this so you can read past posts and connect easily with fellow PV members like @lindaw123 @kibbykyle @learnandlive @randles14.
You may also be interested in these related discussions:
- How do You Manage Side Effects Of Hydrea or Hydroxyurea for ET? https://connect.mayoclinic.org/discussion/side-effects-of-hydroxyurea-et/
- When is hydroxurea usually added to treat polycythemia vera (PV)? https://connect.mayoclinic.org/discussion/hydroxurea/
Have you discussed your concerns about skin cancer risk and your husband's active outdoor lifestyle with his doctor?
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3 ReactionsMy 67 yo husband recently diagnosed with pv (had biopsy). No history of thrombosis events. Phlebotomy plus aspirin lowered rbc and hematocrit 46 but platelets still 500. Because of age risk, Doc wants to start HU. Wondering if an interferon drug is ever used first instead of HU?? I’m worried about side effects. He’s very active outside and worried of skin cancer risks
I use an APAP machine for sleep apnea. It is WONDERFUL when utilized with a minimalistic-style mask, like a P-10 with 'pillows.' If an APAP or CPAP machine is prescribed, please do not hesitate to try it.
NB: The full-face mask was a miserable experience. You get to choose the mask when they order your device. Get the one you want!
-
Like -
Helpful -
Hug
2 Reactions