Lys,

The good news is that your PV got caught.. and generally has a good prognosis. While I am no doctor by any stretch of the imagination Hydroxycarbamide seems to be one of the standard Chemo drugs for cancers such as PV. Like a number of drugs it does have side effects such as hair loss, nausea etc... etc.

I would request you to discuss any concerns you might have with the medical teams, who I am sure will be able to put your mid to rest.

PV is rare per se, but it immently treatable with a good remission rates. Yes it is worrying, but try not to. Please ensure you follow your medical reccomendations, and do take your meds. There is a wealth of knowledge, support and advise available on this board. We are in this together. Wish you the best.

Hello Lys

I was in your same shoes January 2016.  I was diagnosed with an MPN.  MPN’s are Myeloproliferative Neoplasms which are a group of diseases that affect normal blood cell production in the bone marrow. In this case the bone marrow causes an overproduction of one or more blood cell types (red cells, white cells or platelets).  There are six different types of MPN’s.  I have Essential Thrombocythemia (ET) JAK2 negative.  I have been on Hydroxicarbomide since January.  I started on 1x 500mgs which was increased to 4x 500mgs daily.  My platelets have dropped considerably and I am now on 3x 500mgs daily. Side effects differ for each person.  In the beginning I suffered with every side effect on the leaflet but my stomach does not even tolerate a paracetamol so I expected the worst!  The side effects vary from nausea to headaches, fatigue, muscle and joint pains, tiredness, burning and itchy feet, mouth ulcers or in my case all of the above in one hit!  However, they did not last long.  I did not suffer any hair loss or hair thinning, quite the opposite in fact, my hair has grown considerably, but is very dry and frizzy.  I take Silica tablets for my hair and nails and Glucosamine for my joints and muscles.  For me personally, I have never felt so well since being on Hydroxi and it is doing exactly what it should be doing, killing off those peskie little platelets!  I do have the odd day or week where fatigue sets in and only this weekend, I’ve had burning and itchy feet but other than that, I live a “normal” life, and continue to work full time.  I am monitored every two weeks with FBC's.  The only downside for me living with my MPN is I will be on chemo for the rest of my life, but that’s a small price to pay knowing that it could have been a very different story had I not been diagnosed at all.  I too felt very alone when first diagnosed as I was given no information on support groups, so I did my own research.  I joined two groups on Facebook.  You’re not alone, you may be surprised as I was the amount of people living with an MPN.  I find these groups a tremendous support and have made some fantastic friends as each and every one of us know what the other is going through at some point during their treatment.  Try not to worry about the Hydroxi as you may not suffer any side effects at all and even if you do, they do not last long. 

Hi I am a boy of 18 years old from Florence italy I have been diagnosticated: Polychythemia Vera and Polymorphism Factor 5 Leiden homozygous. For now my simptoms are always the same: fatigue, feeling faint with fainting for 45 minutes without having the strenght to get up, cold, cyanotic lips, and cold feet with body temperature to 37,50 with right lower quadrant pain (myalgia). Then move on its own without drugs but leaving me a severe headache that resolve  with taking a paracetamol 1000.

These symptoms have to do with my Polychythemia Vera?

Have you also the same symptoms.?