Worried about symptoms

[love0826]

Hi, I am 56 year old female and I was diagnosed with PV in March this year. At first I was fine with phlebotomies and baby asperin, but in August my platelets went to 1.2 mio and the doctor told me to start Hydroxyrea, 500mg/daily. I have always exercised every day and eaten pretty healthy. lots of water. When I exercise or stand for a while my calves kind of swell up, but it does not looks like water retention. I showed the doc once and he was not concerned. Not my feet, just the legs. Have anybody ever experience that? And, will the weight gain stop at one point? I have to admit, that taking a chemo drug is making me sad, I was told I had to take it for the rest of my life. I also experience more white mucus and cough. Thank you so much for any advise.

[hybiscus]

I’m 56 too and been diagnosed with PV a year ago. Have been on hydroxide since and like you, I feel sad to have to take them everyday but try and keep positive 🧘‍♀️❣️

[love0826 in reply to hybiscus]

Thank you hybiscus. Do you have any side effects?

[hybiscus in reply to love0826]

Hi Love0826, well...I feel my energy levels have never been the same as before. I still lead a normal life except the fact I sometimes feel more tired than usual.

I occasionally have dizzy spells and sharp pain inside my head... luckily it goes away quickly!!!!!

I meditate and do yoga 🧘‍♀️ and try not to think too much about it.

The first six months after being diagnosed it was emotionally very difficult but life has to carry on and I’m determined to not let it take over my life 💪

Please get in touch if you need 💕💕💕

[Aime]

Hi, sorry to hear you are having problems with your PV and medication. If you’re not happy with the answer you’ve received, please ask for a second opinion otherwise you will worry about, which affects how you are feeling and the way you cope with your PV.

I’m a lot more assertive since my PV diagnosis in 2012 and it pays off to get answers to your worries. I’m not on meds yet, so can’t help you in that way but sending you a load of E hugs. Drink plenty of fluid to help with mucus and if you’re not happy with cough, get it checked out. Above all, remember you are not alone.xx 😺😺Aime

[love0826 in reply to Aime]

Thank you Aime for your kind words.

[Ebot]

If it’s any help, I too am in my late fifties with PV and am not on any treatment other than aspirin and venesections. My platelets have been around 1200 - 1400 for the past few years. At the last count last week they were just under 1500 and it was mentioned that we might need to ‘have a conversation’ about possibly starting drug treatment. And invariably it will be a conversation and not a directive. I’m due back in Jan (i’m under the team at Guy’s). I know that their preferred drug for younger patients is Interferon. As anyone who reads my posts knows (!) i’m keen to hold off drug treatment for as long as possible. I’m aware that the magic markers are 45 for haematocrit, 1500 for platelets and age 60. But they are not written in stone. It’s all a question of risks and benefits and MPNs are quite slippery when it comes to management. Moreover, I was also told that once started the drugs are not necessarily ‘for life’. It is quite possible to come off them or to change them. HTHs. Good luck!

[love0826 in reply to Ebot]

Thank you so much, Ebot. You made my day with your response. I have never taken any meds my entire life and I always said, if I ever had cancer, I would not go down the chemo path. So now, it seems I chickened out and I am taking the pills. It is very brave of you to go several years with platelets 1200 to 1400. Somehow that makes me feel hopeful.

[Ebot in reply to love0826]

I don’t know about ‘brave’! I just do whatever the Prof tells me to do. When she suggests I start on drug treatment and that the benefits outweigh the risks then I will follow her advice! I’m interested that given your age and apparent (otherwise) good health that you’ve been started on Hydroxy.

[love0826 in reply to Ebot]

You mean, why was I started on Hydroxy? I am currently staying in the Caribbean and the doctor is a hospital internist, the best around, but not a specialist. He even wanted me to take it right in the beginning, but I refused. When I am back in the States, I will have to get more opinions. And yes, I have always been very healthy and athletic. So this was a shocker. So now every little thing, like a cough, and I think it is a bad sign. I guess, I have to relax with the situation.

[Ebot in reply to love0826]

Yes, definitely worth seeking a second opinion from your regular specialist. (And also worth perhaps exploring other drug options like interferon.) You’ll see from other posts in the past that non specialists sometimes get overly anxious about MPNs and very keen to prescribe (or else totally ignore the whole thing!) It’s always worth getting symptoms checked out. May have nothing to do with the PV! Meanwhile, relax - and enjoy the sunshine.

[Jasbak22 in reply to Ebot]

Hi Ebot I’m 46 similar platlets to you no symptoms currently on aspirin and venesection also under Prof Harrison yes like you say am keen to hold off drug treatment until she’s tell me I definitely should. Think that some Haems prescribe drug treatment sooner than perhaps is needed. Anyway best of luck all. Jason

[Ebot in reply to Jasbak22]

Yes, I agree. Reading the posts in this MPN community has been a real eye opener. At times I feel really quite disturbed (and often frustrated and angry) by the experiences people describe especially those struggling to access expert advice and / or a choice of drug treatments. Invariably no medical team is infallible but these experiences remind me just how extraordinarily fortunate we are to be able to access the team at Guy’s. I’m sure those in other specialist centres around the world feel much the same (and at the very top level it seems - not altogether surprisingly - a pretty small and tight knit community of practitioners).

[Jasbak22 in reply to Ebot]

Yes totally agree with you my first consultation with Guys put me at ease and let me know that I was doing the right thing , this was for a second opinion as my first Haem had suggested hydroxy straight away. Like building work always pays to get a second opinion. Haha. Have a great day.

[Roger41]

So sorry to here of your challenges.

It is quiet scaring at first because of the associated words which takes time to get the over thinking head round it.

Take your time to find out about your condition, by sharing what and where you are on your journey.

Knowledge is power and remember you are not alone.

On this site there is always some one some where who is able to guide you.

Regards Roger41. ( I am female really but it is a handle I could remember with my brain fog.)

[love0826 in reply to Roger41]

Thank you so much, Roger41, for your kindness.