Posted , 10 users are following.
Hi, My partner has just been diagnosed with PV, he went ot the Doctors as he was having Itchy skin for the last few years. The Doc took some bloods and sent him for x-rays and an ultra sound. He has to go for a Bone Biopsy soon.
To say we were shocked was an understatemt!!! I am so very worried about what the results will say.
I am looking for some advice and really something to ease my mind.
H x
0 likes, 33 replies
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Chippenham Helen...
Posted
Helen - It has been three years since I was diagnosed, and I am feeling the best I have in years. The thing that made the difference for me was finding a good MPN specialist. When first diagnosed I had the itching, extreme fatigue, and could barely work. My first hematologist was terrible, he told me to come back in a year and see if I was any worse. I went for a second opinion to an MPN specialist at a cancer center a few hours away, and he got right on top of my treatment - I no longer have the itching, I am back to working 50-60 hour weeks again, and while I still get fatigued it is manageable and doesn't interfere with my daily routine. I am a 60 year old male in the U.S. I take 1000 mg HydroxyUrea daily, and see my hematologist twice a year for check ins. The "C" word can be scary, but don't let your fears get away from you. Stay informed, there are some good resources out there - if you must use Google I recommend you search for Patient Power - they offer seminars worldwide and good weekly resources.
Good Luck!
Chip
peter98873 Chippenham
Posted
As you live in the US you might find a chat with Zapamania to be useful. She has survived many of the problems which you mention and can offer much advice. She resides in New Jersey.
Best wishes.
Peter.
Helen... Chippenham
Posted
We live in Scotland and our NHS have been really quick to diagnose this.
I am glad I came ion this forum , as I have been put at ease with all the feed back, much appreciated!!!
Thanks again.
Helen x
Zapamania Helen...
Posted
Hi Helen, sorry to have called you Harvey. I did the very thing I'm telling you not to do, go to Dr. Google. All it did was scare the bejesus out of me. If you're interested in info, go on YouTube and watch Dr. Ruben Mesa or Dr. Richard Silver speak on our disease. These are 2 of the most prominent Drs. In MPNs in the US. They are well respected. Zap
Helen... Zapamania
Posted
H xx
bill71415 Helen...
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Hi Helen, there are many UK PV people on the Polycythemia Vera support group, if you're on there. Someone there may be able to guide you to an MPN expert somewhere nearer.
Good luck.
Bill
Helen... bill71415
Posted
harrishill1 Helen...
Posted
Helen... harrishill1
Posted
Helen x
macas02 Helen...
Posted
it was discovered when he had a routine blood test. He has had a ct scan and his liver and kidneys are fine .but has been a very worrying time.
he has also had his first venesection with more to come. We will see haemogologist again on 4th May and hopefully get more info.
bill71415 macas02
Posted
That's how mine was discovered at 56 y/o, no symptoms at all. First five years my counts were controlled with phlebotomy (venesection) and low-dose aspirin, until I started to have some neuropathy in my left leg, at which point I started on Hydroxyurea (HU) about 9 months ago. Fixed the neuropathy and no bad side effects at all - yet. Try not to be too intimidated by the C-word, this is a progressive condition but manage the counts and you should live a long and relatively normal life span. Good luck.
Helen... macas02
Posted
Hope you find out more info when you go.
Take care and good wishes
Helen xx
sue41760 Helen...
Posted
I was diagnosed about 2 months ago - a real shock but fortunately found this forum early on. I am 53 and live in England. I was immediately put on to weekly venesections and daily aspirin. My haematology unit were great at giving me printouts of my blood levels and explained the most important numbers to look at. It was encouraging to see the haematocrit level fall as the weeks went by and to gain understanding gradually. I wrote questions down as they arose and have started to feel a little more in control and able to work with the experts who are supporting me. I am now down to monthly venesections and felt able to request that other medication was held off for a few months until I see how things settle.
The wise advice on this forum always seems to be that we are all different in our symptoms and how we respond and we need to be in a good partnership with our haematologist. I continue to try and learn as much about the condition as I can, as much as I can about how I am responding and live life to the full with as much support as I need from informed friends and family.
Wishing you all the best as you discover more. Sue
peter98873 sue41760
Posted
Well you have certainly started off sensibly and that augurs well for the future. PV is a rare and serious disorder that needs a level-leaded approach. Keep in touch with your Haematologist if anything concerns you and there is no reason why you should not continue to a a long and healthy life. PV needs a confident and professional outlook which you now seem to have acquired. Do not reach too far ahead, take things as they come and always let your haematologists be your guide. Best wishes.
Peter.
Helen... sue41760
Posted
Take Care
H x