I'm a 43 year old and otherwise very healthy male. Routine blood test showed very elevated Hct and Hgb. I had radiation therapy for testicular cancer 13 years ago, so I'm thinking RT may be the cause of the condition. I'd like to know if anybody else with PV suffers with periods or episodes of bone pain?
Over the last couple of months I've been suffering from bouts of growing type pains in my upper front legs and arms, especially elbows. My GP has prescribed me aspirin until I see the haemotologist next week. I'm just hoping that I'm not going to be consigned to a middle age of pain and discomfort due to PV. I have been an active gym rat until very recently, and I cannot imagine anything worse than being totally inactive because of this.
Any thoughts or comments very welcome.
Best wishes.
Craig
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Ashto70
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I also have PV, disgnoses recently after afew other medical issues being found. I used to be an avid runner, half marathons and all sorts, now I bearly walk up escalators (I work in central london) I have aches and pains in my hips and back. I am on Interferon and it seems to help with lots of symptoms, I have also adjusted my diet, not massively but little things. I am only 33 and am broken that my fitness has been shot to pieces, people keep telling my things are a state of mind and in your head.....These people I want to shoot!!
Thanks so much for your reply. I'm sorry to hear you have problems getting about, especially after years of running around for fun. Are you in the UK? I'm in England, and I thought practically all patients were on Hydroxyurea here. Interferon is a pretty new treatment for PV isn't it? I take it you must have had issues with other drugs.
You are very pretty, and look very fit and healthy. If the profile pic is a recent one, I'd say you were doing very well for a PV patient! Anyway. cheers again for the response, and I'll keep everyone updated with my haematology appointment on Thursday. I'm so glad there is a forum like this. I'm in a very lonely place at the minute.
I'm not sure if it's new. I was told because I was so young that it was the most suitable. I eat pretty clean, don't drink and don't smoke so I think all of that helps me look and feel better. The picture was taken a few months back. I'm looking better now than I was. Keep smiling and I hope things work for you.
You will be told that they cannot put MPN's down to a certain cause. Although there is a possibility that radiation or petrochemicals can cause it because anybody can get it you will not be able to claim that they caused the problem.
Eg in my case I believe petrochemicals are to blame for my ET but I am unable to prove this in a court of law. I have been told once it progresses to Myelofibrosis or AML then I have the proof
I'm also on testosterone therapy, and my GP says it may be due to the testosterone, but because my blood came back so high and 13 years after starting T therapy, he is at a loss and thinks it may be something else causing it.
I understand that petrochemicals can be a risk factor for many carcinogens including testicular and some skin cancers. Did your employers ever tell you of any risks involved in your work? If your condition is due to chemicals I hope you will sooner or later be able to prove it and get compensated for your ill health.
Hi Craig sorry for the delay in responding. I have just retired after 30 years in the Fire Brigade and after I was diagnosed tried to think of exposures. Trouble is we are exposed to lots of burning chemicals daily but an area I was exposed constantly was when I was an instructor at a training school. It was only when I had thought of the school that I was told that another officer who worked in the same field and at the same time had since died. He was in the same boat that until it transformed he had no case, but unfortunately soon after diagnosis he had a brain haemmorage. We will wait and see
I know, it's all a pain in the proverbials isn't it?
Bone pain is one of the listed symptoms of PV, it does affect my knees a bit but nothing horrendous, I'm still hiking up the Lake District fells ( I'm 60 - diagnosed PV 2009) I sent a really long note to Spikesnana yesterday outlining how changing my diet and lifestyle has improved the symptoms of PV for me ( everyone is different of course) at least 80%. Perhaps you'd like to read it.
You have a cigarette in your mouth in the photo. Do you smoke?
With the greatest of respect, it's probably one of the worst things you can do with a myeloproliferative neoplasm. You've been diagnosed with a rare blood cancer, albeit slow growing and the prognosis is good, but nevertheless, not to be taken lightly. Think smoking think stroke and blocked arteries. Sorry to lecture, I'm really neither saint nor paragon of virtue, but I feel really strongly about healthy lifestyles even if you are a gym addict! Look also at mpnvoice.org.uk.
A superb support website with loads of info and tips.
Think about attending a forum - the next is at Christie's in Manchester on June 28th 10.30 to 3.30, where you'll glean loads of info re MPN's and research, and meet other patients. Not a depressing experience by any means ( I've been to 4 so far).
You could also consider making a one off private appt with a haematologist specialising in MPN's, because not all of them do. Look at all the large hospitals in your area, click on consultants, there are profiles for most of them listing their specialist areas.
Hope things improve for you, they will eventually, just takes a bit of time and effort.....
Yes that is me in the photograph, and I do smoke but only a few a day nowadays. I am intending to stop next week, after my consultancy. I have a strong interest in diet and exercise, and have an honours degree in Sport, Exercise, and Health Nutrition. It's a bit of a sad irony therefore, that I smoke!
It's not the most suitable picture for a forum like this, but it was the only one I had at hand. I will be changing the profile pic today to a more appropriate one.
Yes. I saw your post to Spikesnana before I posted my own introduction. You speak a lot of sense and I totally agree with everything you wrote. I'll certainly be applying your wisdom to my own situation.
As it is though, I'm very confused about how they will confirm any diagnosis. I mean, I can't understand how the effects of a therapy hormone could now transcribe into - as you describe - a cancer or any blood condition for that matter. If testosterone helps increase production of RBC's then why a problem? Is it because testosterone raises RBC's but stays within normal limits. Whereas, in my case, the problem is that the RBC's have exceeded all the normal ranges?
My last Hgb counts were I think: 20.4, 19.8, and 21.2. I know that ideally t should be around 14 for a bloke, and 17nmols as a maximum. My Htc was 57 or 58% if I recall correctly. My question for anyone who can answer it is: Is it polycythaemia because these numbers have gone over what even testosterone therapy would be expected to produce? Or is it possibly because of the radiation my spleen and abdomen received 13 years ago? It's all getting me very confused. I thought a high blood count was insignificant until all these tests started showing up abnormalities.
Sorry for the questions Louise. You are a very glamorous lady and you look like you do practice what you preach, and that's important.
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