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....
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....
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!
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 was just diagnosed in Sept. 2022 (Hospitalized Sept 22-30 due to cellulitis) My numbers were the same, everything was high Nov.10-30 Hospitalized for cellulitis 2020 and doctor's missed my diagnosis until I landed in hospital again. This time doctor called hematologist; bone marrow biopsy and diagnosed with Myelofribrosis which is chronic myeloid leukemia. It's rare so the hospital missed it. Now we are trying to deal with my symptoms and treatment.
Although dx are not hurrying to get a bone marrow aspiration and biopsy for PV diagnosed summer 2021 and treated with hydroxyurea and periodic phlebotomies, is there a benefit (if it doesn't necessarily change current treatment).
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..
In my case at 74 I can confirm HU was prescribed first - it made me very nauseous but as you say everyone reacts differently. Good to know you’re doing so well. Long may it continue.
I was just diagnosed in Sept. 2022 (Hospitalized Sept 22-30 due to cellulitis) My numbers were the same, everything was high Nov.10-30 Hospitalized for cellulitis 2020 and doctor's missed my diagnosis until I landed in hospital again. This time doctor called hematologist; bone marrow biopsy and diagnosed with Myelofribrosis which is chronic myeloid leukemia. It's rare so the hospital missed it. Now we are trying to deal with my symptoms and treatment.
Hi @raremiracle2 Welcome to Mayo Connect! This is a wonderfully supportive forum. It helps when you find others who are going along the same medical journey so you’re not feeling quite so alone.
There are a number of discussions with members who have Chronic Myeloid Leukemia who are very encouraging with their experiences with CML.
I did find a free educational course that’s offered through Mayo Clinic for CML patients. It’s very informational and I encourage you to follow along.
Here are a several of the conversations you might like to join. Don’t hesitate to pop into any discussion and tag a member by tying in their @name. That way they’ll get a notification.
Chronic Myeloid Leukemia https://connect.mayoclinic.org/discussion/chronic-myeloid-leukemia-1/
~~~ @ginlori0509 who was recently diagnosed with CML started this discussion. There are some good links in some of the replies.
Connect
Connect
Like
Helpful
Hug
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....
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..
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Hug
2 ReactionsThank you!
We have not talked to doctor yet. Appointment with new OSU James Cancer Center doc not till March
Thank you!
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Helpful -
Hug
1 ReactionIt 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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Like -
Helpful -
Hug
1 ReactionHe is also Jak2 positive (which I should have stated). His blood pressure did come down some with phlebotomy.
Thanks!
I was just diagnosed in Sept. 2022 (Hospitalized Sept 22-30 due to cellulitis) My numbers were the same, everything was high Nov.10-30 Hospitalized for cellulitis 2020 and doctor's missed my diagnosis until I landed in hospital again. This time doctor called hematologist; bone marrow biopsy and diagnosed with Myelofribrosis which is chronic myeloid leukemia. It's rare so the hospital missed it. Now we are trying to deal with my symptoms and treatment.
Although dx are not hurrying to get a bone marrow aspiration and biopsy for PV diagnosed summer 2021 and treated with hydroxyurea and periodic phlebotomies, is there a benefit (if it doesn't necessarily change current treatment).
In my case at 74 I can confirm HU was prescribed first - it made me very nauseous but as you say everyone reacts differently. Good to know you’re doing so well. Long may it continue.
Hi @raremiracle2 Welcome to Mayo Connect! This is a wonderfully supportive forum. It helps when you find others who are going along the same medical journey so you’re not feeling quite so alone.
There are a number of discussions with members who have Chronic Myeloid Leukemia who are very encouraging with their experiences with CML.
I did find a free educational course that’s offered through Mayo Clinic for CML patients. It’s very informational and I encourage you to follow along.
– Chronic Myeloid Leukemia Patient Education Series https://mccmscontent.mayo.edu/LSC/ChronicMyeloidLeukemiaPatientEducation/content/index.html#/
Here are a several of the conversations you might like to join. Don’t hesitate to pop into any discussion and tag a member by tying in their @name. That way they’ll get a notification.
Chronic Myeloid Leukemia
https://connect.mayoclinic.org/discussion/chronic-myeloid-leukemia-1/
~~~
@ginlori0509 who was recently diagnosed with CML started this discussion. There are some good links in some of the replies.
Philadelphia chromosome: Anxiety awaiting diagnosis
https://connect.mayoclinic.org/discussion/anxiety-awaiting-diagnosis/
~~
I think this will be a really encouraging discussion with
@suzie71, who had been a CML survivor for over 20 years! You’ll also meet @babyjakejake @anglis @ericloomis and others who are on the same CML journey with you.
~I've had CML for 20 years and want to encourage others
https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/
What are your symptoms and treatments for CML?