Living with PV

Living with and after blood cancer
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Hi all

Was diagnosed with Polycynthoema Ruba Vera JAK 2 just over a year ago. Was in denial initially, didn’t ask many questions! but now my friends are booking flights to warmer climes, I feel lost & don’t even know if ppl with this condition should take flight or not. I’m tough but confused, am on combo of blood removal…+ hydrea atm. Hydrea wasn’t agreeing with me so have just begun a trial of a combo of both since end of November. I’m a golden oldie!! BUT I just don’t want to live with this condition lying down! Am also a bit scared to drive any distance other than about town. Any comments or advice would be much appreciated

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@PVMags

Hi

Hope you’re well and thanks for posting.

If I was in the same position to you and not being a medical professional or any knowledge of your circumstance, if I felt well and physically fine and have been, I would take the trip. I go by the motto that I can live with my mistakes but not by my regrets.

The key thing to remember there is no wrong or right decision. Be confident in making a decision and focus on the reasons for making it and remember or write these down whenever your mind starts to contemplate.

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Hi @PVMags thanks so much for posting.
Perhaps adding to @Rammie18 response you could again write down all your questions and ask either your consultant, your CNS (Clinical Nurse Specialist) or GP about your questions.
I really understand your feelings having friends booking flights to warmer climes. Such an excellent opportunity to have a sunny, fun trip with friends.
Being a golden oldie is certainly not a barrier if I my say so.
I can also understand your feelings about not wanting to drive any distance.
If you are going with friends perhaps a lift is appropriate and a donation towards fuel.
If you require travel insurance that needs to be taken account and there is lots of information and experiences of others on this site.
Oh, I can tell that you are a tough, fun loving cookie, but perhaps you need to check out with a medical person first.
Please do let us know how you get on and I would be interested in hearing more about you.
Look after yourself

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Hi Thanks to you both. I just felt so exhausted this morning, I couldn’t get up or shape up. I just lay on another bed after I got up. Was an effort to make breakfast, now need to cook dinner but a fly would have more energy!

I checked if Vitamin D interacted with Hydrea or warfarin which I’ll be on for life as well. There was no indication that it interacted with any of the two. Vitamin D was helping my energy level and my mood. Zinc combined as Hydrea a horrible chemotherapy drug just weakens the immune system, one of the side effects of Hydrea is fatigue, yet one of the side effects of Polycythaemia vera (PV) is also fatigue.

Years ago before any magic pill for this condition, people had to rely totally on blood extraction treatment which was :100: safe.

My Consultant kept on in increasing the dosage of Hydrea despite the fact that Hct remained at 0.45. Only when I insisted that I couldn’t wake up let alone get up most mornings plus the fact I had significant hair loss, did he agree to meet me to discuss options.

I am back to 3 Hydrea 500 per week as opposed to 1×500 6 days a week after just over a year from diagnosis + 3 weekly to monthly visits to monitor blood readings. Have had 2 lots of blood removed & am due another checkup on the 31st Jan.

I certainly do feel much better since the reduction in Hydrea, apart from today.

Perhaps I’m not getting sufficient oxygen? Am indoors with central heating on all day! weather with icy conditions prevented me from going out, now thick drizzle has replaced it at the moment.

Apologies for all the details but others coming on here may be able to identify with my symptoms and method of treatment which I’m currently on.

Quite frankly, I’d prefer to have blood removal only (I was given that option during last Consultation before reduction in Hydrea) but asked if combo of both could be used for a start, Consultant gave me that option.

Just to mention how I arrived at Polycythaemia vera (PV) diagnosis…

1 in October 2020 I had a clot in my leg, hence the warfarin for 3mths initially, then a further 3 months. I was taken off the warfarin then. At beginning of July 2021 I developed a clot in my lung & went to A&E where the Dr there decided he wished to do an additional blood test on me which led to my diagnosis of P ruba vera jak2. mutitation :astonished: Shock, denial, confusion followed. No support group until I banged on Haematology staff that I needed to compare notes, know what my limitations should be, whether I could go back to my art sessions…thought sitting for 3 hrs feet hanging down may be a hindrance so (not the best to do regardless of any condition (sitting for 3 hrs)!!! so here I am at this point & by the way, I am 75yrs of age. Maybe I should throw in the towel altogether!! at this age!!!

PVMags

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Hi @you are a mere youngster, even though you might not feel it at the moment.
I am so sorry that you are feeling so exhausted it must be horrible.
I hope your medical team know how rough you are feeling
Don’t forget if you would like to chat to someone that the Blood Cancer UK support line is there for you on 0808 888 2080
I hope the weather improves and you are able to wrap up warm and just get some fresh air.
Look after yourself and please keep posting

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Hello PVMags
I too have Polycythaemia vera (PV) Jack2 positive and I too are 75 years old. So, we already have this in common.
I was diagnosed just about 2 years ago. Was precribed Hydroxycarbamide 500gm 5 days a week, plus aspirine and regular venesections. My symptoms were different to yours. I suffered the most terrible itching/burning skin that nothing would relieve , antihistamines, creams phototherapy… nothing.
I have now been prescribed a new drug “ruxolitinib” and in a week, my symptoms have gone completely. They have to monitor my bloods regularly, and I have the first blood test today. I will have my results tomorrow by phone. I am keeping my fingers crossed, because my life has changed for the better. I cannot believe it. I am so happy and hopping to fly to Mallorca to see family, as soon as my Consultant gives me permission.
I am sending you my best wishes and good luck. Keep in touch if you wish. I love getting in touch with this lovely friendly group. Oleconchi

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Hi gosh so delighted you have finally got relief from that raging itch. Can just imagine how you felt when nothing seemed to be working to aleviate or rid you of it.
I must take note of the name of that drug if in case I need it down the line. The trial and error business is so frustrating when no positive results.

You can look forward to your holiday in peace! now. You will savour every moment of it so safe journey there and back.

Please do let us know how life is treating you and how you are getting along.

Best regards

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I know I have replied to your other post @oleconchi
I really, really hope you can fly to Mallorca to see family, I think family and friends are priceless.

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THANK YOU SO MUCH! for all your lovely replies and good wishes.

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