Posted , 15 users are following.
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
1 like, 27 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
paul250360 paoloNarciso
Posted
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 !
paoloNarciso paul250360
Posted
paul250360 paoloNarciso
Posted
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 !
paoloNarciso paul250360
Posted
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
lijuan7002 paoloNarciso
Posted
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.
paoloNarciso lijuan7002
Posted
lijuan7002 paoloNarciso
Posted
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!
ellie4542 paoloNarciso
Posted
I am still gathering information as I wait on results on my bone marrow biopsy and aspiration. My red count was elevated and my physician sent me to an oncologist. My 30 year old son had AML so I think that was a red flag.
The oncologist wasn't concerned until I mentioned stinging and itching after a warm shower. I had an arterial blood draw it show that I have the JAK2 mutation. They did the BMB on Friday.
I've started a mild baby aspirin daily. I am 62 but very active, otherwise heathy, and I'm an elementary principal.
Thnk you all for being transparent. I have much to learn.
peter98873 ellie4542
Posted
Hi Ellie,
From what you explain your symptoms do suggest that you have PV, but nevertheless your test results will decide the matter. Aspirin is to thin the blood to prevent blood clots from forming. If you care to look at the lower right-hand side of this page you will notice references to Polycythemia Vera and to click on and this will avail you of quite a bit of useful information on this disorder. It is not unusual to be diagnosed with this later in life but it is generally accepted that this is with you from birth caused by a defect in the JAK2 gene. It does not normally identify itself until later in life when symptoms are first noticed. Your treatment will ultimately be decided from your test results but this does not necessarily say they will be the same as other patients. Each patient is dealt with individually and the treatment prescribed by your medic once the results are concluded.
PV is a very varied disorder for which different treatments are available and will need ongoing supervision by your doctors. Don't try to overwhelm yourself with many details but just take things as they come and don't forget to put any queries you may have to your specialists. Carefully controlled there is no reason why you should not maintain a full life and activity level. See what your test results come up with and take it from there.
You will find plenty of answers to help from this forum. Good luck.
Peter.
Amy1997 paoloNarciso
Posted
I'm 19 and have PV. I recently had a baby as well,
peter98873 Amy1997
Posted
PV is not an inherited disease as far as is known, neither is it transferrable between people. The disease is caused by a defect in the JAK2 gene at birth. There is no way that you could have known about it and neither could you have prevented it. It is sad that you are quite young to have been diagnosed with this disease. More generally PV symptoms are not recognised until later in life when most patients seem to be diagnosed and subsequently treated. It is a progressive disorder and will need professional medical supervision for you to stay comfortable. There is no reason why you should not have a long life if you look after yourself and obtain the help of a haematologist. PV is caused by the blood making too many red cells which will affect the body system. It is treatable but not curable yet except perhaps by stem-cell treatment which is serious and needs long-term medical assistance. This treatment is not usually advised for older patients and not readily considered in younger patients. Your haematologist can answer any queries you may have and will most certainly be happy to do so. You will learn much about PV (one of the group of MPN diseases) as time passes
and I am certain that others on this forum will be able to advise further where necessary. There is no reason to suspect that your baby would be suffering this illness. Good luck for the future.
Peter.