I was 2 years on hydroxyurea and then told to go on jakifi. Felt reL good for about 2 months then started to get tired and dizzy at times but I think it is Pv.Any body over 78 on Jakifi.They say the average death is 78 from pv.hope they are wrong
That is foolish talk! Every case is different. I was 78 when diagnosed! I guess I am dead. Have no symptoms and taking HU for a year and a half. It seems the mutation occurs from aging…
That is foolish talk! Every case is different. I was 78 when diagnosed! I guess I am dead. Have no symptoms and taking HU for a year and a half. It seems the mutation occurs from aging…
My oncologist said usually between 55-65 people are diagnosed with PV. I’m so special That I was 55 😉 Some are younger yes, but that’s the average age. It’s so rare that we are low on the research ladder sadly. Just have to take your meds and keep up with your lab work to keep truckin! Grateful to not feel alone and get an occasional chat on here ❤️
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I have Polycythemia Vera not sure how long however I noticed my cells were increasing with each semi annual blood draw..The doctor attributed to dehydration. Finally my blood numbers kept going higher and I knew I wasn't dehydrated so I went to a Hematologist, he knew immediately I had PV although he did have the Jk2 done and it was positive. I'm 74 at the time and he told me I caught it early. The hydroxurea was delayed because of a carotid stunting. I started on the hydrox (Know I was treated for hypertension my entire adult life..after on hydroxurea approx 4 months my adrenal gland hormones dropped causing my blood pressure to drop. dastrically... ive gone from 80 of valsartan twice a day to none. has anyone on hydra had adrenal fatigue or insufficiency....? I'm desperate...any positive or negative would be productive.
New subject.
I have Polycythemia Vera not sure how long however I noticed my cells were increasing with each semi annual blood draw..The doctor attributed to dehydration. Finally my blood numbers kept going higher and I knew I wasn't dehydrated so I went to a Hematologist, he knew immediately I had PV although he did have the Jk2 done and it was positive. I'm 74 at the time and he told me I caught it early. The hydroxurea was delayed because of a carotid stunting. I started on the hydrox (Know I was treated for hypertension my entire adult life..after on hydroxurea approx 4 months my adrenal gland hormones dropped causing my blood pressure to drop. dastrically... ive gone from 80 of valsartan twice a day to none. has anyone on hydra had adrenal fatigue or insufficiency....? I'm desperate...any positive or negative would be productive.
I can relate to the low adrenal function. I am 48, diagnosed with PV last year, Jak 2 positive. I started on hydroxyurea last fall, then switched to Jakafi earlier this year. Jakafi took away the need for monthly phlebotomy and the constant hot flashes. Also, I do not have a thyroid so I'm constantly shifting thyroid doses depending on my thyroid lab results. I am tired all the time. I have 5 kids ranging from 21 yrs down to 11 year old twins. I do not like the idea of taking medication, but it does help keep the cancer under control. I will ask my oncologist at my next appointment about how to address adrenal fatigue in the midst of all of this. The best thing is that I know I am not alone as I walk through this. So thankful for this very informative message board!
I can relate to the low adrenal function. I am 48, diagnosed with PV last year, Jak 2 positive. I started on hydroxyurea last fall, then switched to Jakafi earlier this year. Jakafi took away the need for monthly phlebotomy and the constant hot flashes. Also, I do not have a thyroid so I'm constantly shifting thyroid doses depending on my thyroid lab results. I am tired all the time. I have 5 kids ranging from 21 yrs down to 11 year old twins. I do not like the idea of taking medication, but it does help keep the cancer under control. I will ask my oncologist at my next appointment about how to address adrenal fatigue in the midst of all of this. The best thing is that I know I am not alone as I walk through this. So thankful for this very informative message board!
Hi Kelly, I too am Jak2 positive with PV diagnosed at 55 on Hydroxyurea now for two years almost. I am having terrible hot flashes but am in menopause also but was thinking it’s from that. I know PV can cause night sweats but mine are all day! I need to ask my oncologist about options. I was put in a low dose BP med that really lessened them but after a few months, I’m back to having them all the time. I get phlebotomies about every 8 weeks. Jakafi is the only other medication but is extremely expensive and I’m not sure it’ll be an option for me. I’m just waiting it out for now hoping it’s my hormones…
I was diagnosed with PV in Jan 2020 but refused to take any prescription drugs till my PLT count went above 2050 in the summer of 2022. Therefore I started Hydroxyurea, 500 mg twice a day. My PLT count in Aug 2024 was 671, the lowest yet since getting a blood test in 2019. As of 9/9/24 I started taking Jafafi, 5 mg twice a day and my PLT count had climbed back after 3 days so my hematologist told me to take both the Jafafi and Hydroxyurea. Now my PLT count is up to 975 after just 10 days. Help! What's going on?
I was diagnosed with PV in Jan 2020 but refused to take any prescription drugs till my PLT count went above 2050 in the summer of 2022. Therefore I started Hydroxyurea, 500 mg twice a day. My PLT count in Aug 2024 was 671, the lowest yet since getting a blood test in 2019. As of 9/9/24 I started taking Jafafi, 5 mg twice a day and my PLT count had climbed back after 3 days so my hematologist told me to take both the Jafafi and Hydroxyurea. Now my PLT count is up to 975 after just 10 days. Help! What's going on?
Hi @robinll. With PV (Polycytmenia Vera) it is generally the red blood count that is elevated, though it can also involve over production of white cells and platelets. Quite often the cause behind this is an acquired mutation in one or more genes that control the production of cells such as the JAK2 gene. Polycythemia vera (PV) is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs) in which cells in the bone marrow that produce the blood cells don’t develop and function normally.
Because they are proliferative, that means these conditions can change over time. It is possible that there have been changes in your condition that requires more evaluation such as a bone marrow biopsy or genetic testing to see if you have mutations involved and the over all health of your bone marrow in its ability to make healthy cells.
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That is foolish talk! Every case is different. I was 78 when diagnosed! I guess I am dead. Have no symptoms and taking HU for a year and a half. It seems the mutation occurs from aging…
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1 ReactionMy oncologist said usually between 55-65 people are diagnosed with PV. I’m so special That I was 55 😉 Some are younger yes, but that’s the average age. It’s so rare that we are low on the research ladder sadly. Just have to take your meds and keep up with your lab work to keep truckin! Grateful to not feel alone and get an occasional chat on here ❤️
-
Like -
Helpful -
Hug
1 ReactionNew subject.
I have Polycythemia Vera not sure how long however I noticed my cells were increasing with each semi annual blood draw..The doctor attributed to dehydration. Finally my blood numbers kept going higher and I knew I wasn't dehydrated so I went to a Hematologist, he knew immediately I had PV although he did have the Jk2 done and it was positive. I'm 74 at the time and he told me I caught it early. The hydroxurea was delayed because of a carotid stunting. I started on the hydrox (Know I was treated for hypertension my entire adult life..after on hydroxurea approx 4 months my adrenal gland hormones dropped causing my blood pressure to drop. dastrically... ive gone from 80 of valsartan twice a day to none. has anyone on hydra had adrenal fatigue or insufficiency....? I'm desperate...any positive or negative would be productive.
I can relate to the low adrenal function. I am 48, diagnosed with PV last year, Jak 2 positive. I started on hydroxyurea last fall, then switched to Jakafi earlier this year. Jakafi took away the need for monthly phlebotomy and the constant hot flashes. Also, I do not have a thyroid so I'm constantly shifting thyroid doses depending on my thyroid lab results. I am tired all the time. I have 5 kids ranging from 21 yrs down to 11 year old twins. I do not like the idea of taking medication, but it does help keep the cancer under control. I will ask my oncologist at my next appointment about how to address adrenal fatigue in the midst of all of this. The best thing is that I know I am not alone as I walk through this. So thankful for this very informative message board!
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Helpful -
Hug
2 ReactionsHi Kelly, I too am Jak2 positive with PV diagnosed at 55 on Hydroxyurea now for two years almost. I am having terrible hot flashes but am in menopause also but was thinking it’s from that. I know PV can cause night sweats but mine are all day! I need to ask my oncologist about options. I was put in a low dose BP med that really lessened them but after a few months, I’m back to having them all the time. I get phlebotomies about every 8 weeks. Jakafi is the only other medication but is extremely expensive and I’m not sure it’ll be an option for me. I’m just waiting it out for now hoping it’s my hormones…
I was diagnosed with PV in Jan 2020 but refused to take any prescription drugs till my PLT count went above 2050 in the summer of 2022. Therefore I started Hydroxyurea, 500 mg twice a day. My PLT count in Aug 2024 was 671, the lowest yet since getting a blood test in 2019. As of 9/9/24 I started taking Jafafi, 5 mg twice a day and my PLT count had climbed back after 3 days so my hematologist told me to take both the Jafafi and Hydroxyurea. Now my PLT count is up to 975 after just 10 days. Help! What's going on?
Hi @robinll. With PV (Polycytmenia Vera) it is generally the red blood count that is elevated, though it can also involve over production of white cells and platelets. Quite often the cause behind this is an acquired mutation in one or more genes that control the production of cells such as the JAK2 gene. Polycythemia vera (PV) is one of a related group of blood cancers known as “myeloproliferative neoplasms” (MPNs) in which cells in the bone marrow that produce the blood cells don’t develop and function normally.
Because they are proliferative, that means these conditions can change over time. It is possible that there have been changes in your condition that requires more evaluation such as a bone marrow biopsy or genetic testing to see if you have mutations involved and the over all health of your bone marrow in its ability to make healthy cells.
Here’s a quick fact sheet from the Leukemia & Lymphoma Society that you might helpful: https://www.lls.org/sites/default/files/file_assets/FS13_PolycythemiaVera_FactSheet_final5.1.15.pdf#:~:text=In%20PV%2C%20red%20cells%2C%20white%20cells%20and%2C%20often%2C,is%20not%20a%20cause%20of%20any%20significant%20efects.
When you were diagnosed with PV did your hematologist check for genetic mutations?
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