Hi Im new to this forum, Im wondering if there are people here that have PV and still young like me, Im just 21 Years Old. And I didn't fully understand how PV can affect my life..
Thanks
-Paolo
I have had PV about 5yrs. now coming out of a couple of different cancers.
I have a specialist who knows about PV and I started with phlebotomies
since my PV (HCT was in the high 50;s). This helped get the HCT (the governing
component) to determine the Care needed for treatment of PV.
You did not mention if you are under doctor's care or on meds. or having phlebotomies or any other illnesses. One cannot answer you concerns when you are so vague. Good Luck !!
Im on doctor's care, im taking aspirin everyday and have phlebs, already done with two, i also take anagrelide and hydrea to lower my platelet,. now Im only taking aspirin and vitamins. I usually have headaches my arms feels numb sometimes.
l was only 30 when diagnosed with PRV. Have had the standard (roughly 3 monthly phlebotomies) and a daily aspirin over 25 years.
Without knowing in the details of your condition the only advice l can offer is to keep your condition regularly monitored, perhaps taking anti DVT precautions when flying long distances. Apart from that live a normal happy and fulfilled life. l plan on being around another 25 years at least and feel as good now as l did when l was 40!
You are following the same program that I have been on Except I
will NOT take hydrea (too many side effects). I just changed my diet
of NOT eatting red meats and walking and drinking more water (plus baby aspirin and phlebs from weekly to monthly)..
This has contolled my HCT (without the drug). It works for me maybe
not for you. My doctor prefers I take hydrea...at present I will not.
I am in my senior years and supposedly more fragile but I feel quite well and able to do everything that a healthy person can.
I was diagnosed 30yr ago, I am almost 60 now, though when I learned of the symptoms I realised I have had this disease all of my life. It explained missing school or not being able to hold down a job. A lot of the symptoms I recognised as far back as young as 3yr old. I take aspirin and hydrea and despite my bloods being near normal ( though creeping up slowly) I still need blood off from time to time. I still get the symptoms associated with the disease restless leg syndrome is particularly bad due to a lack of iron. For restless leg I take quinine and ropinrole, which helps a good bit. I did have to give up drink a smoking, though it's not the end of the world. You can Google the symptoms to see if any or all of them are familiar to you. Don't let it stress you . Just stick to the rules look after your self and you can have a long life depite the negative diagnosis. Any thing specific and the good folk on here will answer your question. Be well.
Paolo, you are unfortunate to have PV so early in life, but this is not unusual in itself. Providing you look after yourself, both physically and mentally you should enjoy life. I have lived with PV for many years and am still fairly upbeat about things. It would be easy to give you mounds of information but it is not really necessary. There are some very good web-sites that deal with PV from all angles so learn from these rather than be bombarded with too much detail. Most sufferers are affected differenly so much of what may be given in good faith, might not be relevant to your situation. You have been diagnosed so keep in touch with your doctor and if necessary, the haematologist at your local hospital. You will find them informative and helpful in dealing with your difficulty. So far, PV has remained incureable but there have in recent times been some gtreat advances in understanding and treating it. Just live your life as you would and be sensible in keeping yourself healthy and fit. My experience is that you can live around PV without it affecting you . If ever you become concerned do not hesitate to see a professional medic and discuss it with them. It is a rare disorder of the blood which can be medically controlled and you are better off with professional help from the outset. Good luck for the future.
Hi Paolo, PV affects your life in that you will need to see a Haematologist regularly, and get phlebotomies at first, then will be put on medication such as Hydroxyurea. However, you can lead a normal life. It can turn to cancer, but I now some who've had it for 20 yrs, and haven't got cancer. I exercise, do yard work, etc, and have lots of energy. Sometimes I need a nap, but I am 74 yrs old now. Have had PV diagnosis for 4 yrs. Just take your meds as told, and have faith. It's not as bad as some other illnesses.
Thanks everyone for your kind response, I just dont understand why i got this disease I dont have vices like smoking or drinking, since there has no cure for this I know my last option is deal with it, but Im always tired, I am still working but every morning I just want to sleep and rest what I mean is I am discouraged to do normal things right now, i feel drained and have no energy to do anything, but despite of that I still go to work, I plan to quite job but I cant it is only my source of income. I start working out on a gym, do you think it might help me to regain energy? Im sorry if my words are a little bit confusing. Im not good in english. btw Thanks.
-Paolo
I have 2 different cancers, lost both parents when I was a year old
lost 2 husbands due to war..but I am upbeat...even though I now
have PV. I do not live high on retired income but I am happy.
This is life..ups and downs... I am not sure if you are religious
but this has helped more than words can express. No body
know where PV or Cancer (in most cases) comes from. I call it
a bump in the road of life. Accept it..do your best mentally..
and go to the doctor for the rest. Good luck!!
Your English is fine Paolo.
The exercise should help but don't go too hard too early but the fitter you are the better you'll feel - i think when you get your HCT down you will start to feel less tired - l work 11/12 hour days at a desk but still walk around 12km's every day and l played basketball every week until l turned 50 and snapped my achilles! Am back playing occasionally at 55 !! l don't smoke but enjoy a beer or two on the weekends - it won't hurt you !
Thanks, my only exercise is going to gym, 2hrs 3x a week, i dont play basketball. I have a bike but no time to use it. I also work on office and sit for the whole days, but still i feel weak everyday after work, is this normal to us? I know Im young and might experience many things because of having PV Im just quite worry about having more serious condition like AML and MF, but know Im doing fine after 2 phlebotomies last month.
l get tired too but probably would even if l didn't have PRV with my long days. l try to get out for a 10/15 minute walk at lunchtime which wakes me up for the afternoon ahead ! Don't worry about things that "might" happen. Anyone could get "hit by a bus tomorrow" !
l was a blood donor for 10 years and got diagnosed (luckily) having abnormally high HCT readings through being a donor - unfortuneately our phlebotomies are no use for blood donations which makes me sad - all that iron enriched stuff going to waste !
yes thats true, it sad that our blood has no use now, im a type AB and our blood bank have shortage for it,. maybe all i need is time to let these things sink on me even i dint fully understand it.
Haha yeah, I know PV can progress to a more dangerous disease but there are so many things that can kill us instantly. now I am not going to worry more. Thanks
Ya can't win the lottery but you can find yourself in this exclusive club. Unfortunately it's in your genes, there's no way you could avoid it.
Because my doctor told me that I have " JAK2 allelic burden", actually I don't know what's that.
I recently read papers about PV disease from the 57th ASH Annual Meeting Exposition (December 5-8, 2015).
In these papers, there is one conclusion as follows:
Continuous reduction of the JAK2 allelic burden indicates that new treatment rather than the absolute dose level is an important variable inducing molecular responses.
Although I still don't understand the JAK2 allelic burden, I still believe we can further knock the down PV disease.
I dont know if Im JAK2 Positive.
Hi Paolo, there is a paper for reference as follow:
Blood. 2014 Mar 6; 123(10): 1544–1551.
In the World Health Organization (WHO) classification of tumors of hematopoietic and lymphoid tissues, Philadelphia-negative myeloproliferative neoplasms (MPNs) include polycythemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (PMF).1 These disorders have overlapping clinical features and a common molecular basis. In fact, three-quarters of these patients carry the unique JAK2 (V617F) mutation,2,3 which is present in about 95% of subjects with PV and in about 60% of those with ET or PMF.4 Somatic mutations of JAK2 exon 12 are found in the remaining 5% of patients with PV,5 whereas mutations of MPL exon 10 are present in about 5% of those with ET or PMF.6 We and others recently found that most patients with ET or PMF with nonmutated JAK2 and MPL carry a somatic mutation of CALR, the gene encoding calreticulin.7,8
I think you have JAK2 allele burden possibly!
Hi, Read you info on PRV ,I too am elderlyrly, I would apprecciate having some one to commnicate with that has been through this.
Thank you for the info. I am newly diagnosed