I will be 69 in July and was diagnosed with PV in April of 2021… Because my HCT was high, I was immediately put on hydroxyurea. I was already taking a baby aspirin and that was also recommended to continue taking.. I did not know what to expect and very concerned about taking a chemo pill.. When you hear the word chemotherapy, you think about potential side effects and how they could impact your life.. I was and still am very active despite having my dose of Hydroxyurea increased to 8500 mg per week.. So far, I have not experienced any known side effects from the HU and have been able to stay very active.. I don’t know how long it will last for me and I know some people have a very hard time tolerating HU.. It seems to be an individual thing… In my case, I have monthly blood tests and the results have been good now for over a year.. I’m not happy about taking these very potent pills, but so far they have been working for me… I hope this helps..
Yeah. The thought of all that just scares the bejesus out of me. Thanks for the encouragement though.
On Tuesday, June 20, 2023 at 06:47:40 AM MDT, Mayo Clinic Connect wrote:
Do you know if you’re having any swelling of your spleen? That can often be a side effect of PV if you feel full soon after eating, experience bloating or discomfort in your upper right abdomen.
I do not believe the doctor mentioned that from the tests. I'm searching now for a copy of it so far haven't found it but think I would have remembered that. I believe my spleen and kidneys were unremarkable with just some nodes in the bottom of my lungs that were very small and some cysts that were also small and diverticulosis.
I have a question. I take 2 baby aspirin a day and down to a phlebotomy every 3 months. I’m doing well with this, just some fatigue and itching comes and goes. Last visit my hematologist/ oncologist suggested I could go on hydroxyurea but I don’t want chemo drugs in my body if I don’t need them, but then I have read that this drug can slow the production of red blood cells in the bone marrow. Does anyone have any information on this.?If something can slow the disease, I don’t want to be foolish and not start on it. I am 74 and very active. I’ve tried to not read every little thing into this disease but would love to hear what your Drs have told you.
My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.
https://www.medscape.com/s/viewarticle/993430
Here's a very encouraging article I just received from a Doctor friend of my family. I'm very excited about this new drug and will be asking my HemoOnc doc about it at my next visit in July.
Stay strong everyone, it takes a village and we're all here to support & encourage each other.
I am determined to live a very long and very active life that includes multiple weeks of skiing out west every winter. If any avid skiers or even newbies are interested in setting a date to meet up at Park City next winter or I'll also be at Stowe in VT for a week or two, haven't booked it yet so don't have dates, for either locations right now. Will be booked soon, I have tons of Hilton Grand Vacation points and my rentals have full kitchens etc. I'm willing to share some points at minimal cost (just my annual maintenance divided into the 35 days of vacation I have banked right now). I would form a group offline in WhatsApp so we can communicate.
My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.
Hi, I’m taking the Hudroxyurea too. I noticed you said once Phlebotomy stopped? Sadly, this will be a life long therapy for those of us with PV. The meds lower numbers and decrease the amount of them needed but we will always have to get blood removed to keep our blood thin enough and prevent serious life threatening issues like blood clots, ulcers etc. I’m glad the meds are working for your husband and wish him continued good health!
Oh yes, phlebotomy will be ongoing. I should have been more clear - once ‘frequent’ phlebotomy stop… Hopefully just a few times a year, but we won’t know for awhile.
My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.
Did not know about sun impact, I always lather it on being fair with blue eyes but will be super vigilant now. Are there any articles that point out the dangers of sun and PV? I know about extreme Temps either way should be avoided. I vacation often in Maine during the summer and it's cool enough for me to hang on the beach all day, I don't like heat much. Should I consider not being out there during peak sun hours? Maybe I'll post a question. Thanks very much for this info and hope your hubby finds his new norm quickly. I haven't found mine yet, diagnosed in April but I'm getting there. I was having weekly draws, then 2 weeks and we're trying a month now. No meds, just low dose aspirin.
Did not know about sun impact, I always lather it on being fair with blue eyes but will be super vigilant now. Are there any articles that point out the dangers of sun and PV? I know about extreme Temps either way should be avoided. I vacation often in Maine during the summer and it's cool enough for me to hang on the beach all day, I don't like heat much. Should I consider not being out there during peak sun hours? Maybe I'll post a question. Thanks very much for this info and hope your hubby finds his new norm quickly. I haven't found mine yet, diagnosed in April but I'm getting there. I was having weekly draws, then 2 weeks and we're trying a month now. No meds, just low dose aspirin.
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Yeah. The thought of all that just scares the bejesus out of me. Thanks for the encouragement though.
On Tuesday, June 20, 2023 at 06:47:40 AM MDT, Mayo Clinic Connect wrote:
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I do not believe the doctor mentioned that from the tests. I'm searching now for a copy of it so far haven't found it but think I would have remembered that. I believe my spleen and kidneys were unremarkable with just some nodes in the bottom of my lungs that were very small and some cysts that were also small and diverticulosis.
My husband is 67, diagnosed past December. He started hydroxy a few months ago and hasn’t had any side effects yet (I was very worried about side effects). Also 1 80mg aspirin daily. The one change is applying sunscreen regularly and more sun shirts.
Still having phlebotomy to get hematocrit down but the hydroxy seems to help keep it stable and has reduced platelets to normal levels(which was needed).
He is still very active although some fatigue. We hope once phlebotomy stopped fatigue will lessen or even go away.
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2 ReactionsThanks for the tip on sunscreen. Being in the beginning stages of all this I wasn't aware. Thanks much.
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3 Reactionshttps://www.medscape.com/s/viewarticle/993430
Here's a very encouraging article I just received from a Doctor friend of my family. I'm very excited about this new drug and will be asking my HemoOnc doc about it at my next visit in July.
Stay strong everyone, it takes a village and we're all here to support & encourage each other.
I am determined to live a very long and very active life that includes multiple weeks of skiing out west every winter. If any avid skiers or even newbies are interested in setting a date to meet up at Park City next winter or I'll also be at Stowe in VT for a week or two, haven't booked it yet so don't have dates, for either locations right now. Will be booked soon, I have tons of Hilton Grand Vacation points and my rentals have full kitchens etc. I'm willing to share some points at minimal cost (just my annual maintenance divided into the 35 days of vacation I have banked right now). I would form a group offline in WhatsApp so we can communicate.
Hi, I’m taking the Hudroxyurea too. I noticed you said once Phlebotomy stopped? Sadly, this will be a life long therapy for those of us with PV. The meds lower numbers and decrease the amount of them needed but we will always have to get blood removed to keep our blood thin enough and prevent serious life threatening issues like blood clots, ulcers etc. I’m glad the meds are working for your husband and wish him continued good health!
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3 ReactionsOh yes, phlebotomy will be ongoing. I should have been more clear - once ‘frequent’ phlebotomy stop… Hopefully just a few times a year, but we won’t know for awhile.
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4 ReactionsDid not know about sun impact, I always lather it on being fair with blue eyes but will be super vigilant now. Are there any articles that point out the dangers of sun and PV? I know about extreme Temps either way should be avoided. I vacation often in Maine during the summer and it's cool enough for me to hang on the beach all day, I don't like heat much. Should I consider not being out there during peak sun hours? Maybe I'll post a question. Thanks very much for this info and hope your hubby finds his new norm quickly. I haven't found mine yet, diagnosed in April but I'm getting there. I was having weekly draws, then 2 weeks and we're trying a month now. No meds, just low dose aspirin.
The sun issue is due to being on hydroxyurea. Your skin is more prone to certain types skin cancers.
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2 ReactionsThank you very much!
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