Hello Jan. 

Just wanted to pop by and say welcome to the forum and thanks for sharing your story. I'm really glad that reading through some of the posts here has given you encouragement. 

It sounds as if you've got a good relationship with your clinicians and it's great to hear that you've had positive experiences at the hospital. 

I hope that things remain stable for you and that you're able to continue doing all the things you want to do - albeit at a slower pace. Perhaps ;) 

Best wishes, 
Jenn
Cancer Chat moderator

Hello

I have been diagnosed with Polycythemie Vera and have the JAK2 positive gene mutation. At the moment I have been getting a pint of blood removed and put on 1 x hydroxycarbomide which I take for 5 days then have the weekend off. I will be seeing the haemotologist again at the end of this month to see it my dossage needs tweaked. Would be interested to hear from others with the same condidtion. How do you feel about it ? What life changes have you made ? How has it impacted you ?  I am 55 years old and have been told that I am low risk but would like to gather as much info as possible from fellow sufferers.

Thanks

Rob

Hi Rob,

Sorry to hear of your diagnosis but good to know you are receiving good care.

I'm sure once your meds have been ' tweaked ' and your next appointment gives more clarity you will begin to feel more confident and reassured.

Personally l have found this journey a little strange as it was a boult out the blue when diagnosed with PV and ET, so to some degree it still seems a bit surreal 2 years on. 
If I'm completely honest l feel that compared to others who are on higher doses of Hydroxycarbomide that perhaps this isn't too serious. Maybe this thinking is somewhat playing at ostriches l don't really know. I read all the information on both of the blood cancers on receiving my diagnosis and only now and again have looked things up when not feeling so good. 
 

Side effects have been fairly few and l am now more aware of how it affects my body.
The worst thing l would say are my feet, as the day goes on the souls of my feet burn and by evening you would think that l had dipped them in beetroot, also the palms of my hands are bright red. They can also be ice cold and take a long time to warm up so quite strange.

If l am tired my spleen is sore, not particularly very painful but around the left area of my stomach and back feels tender.

Night sweats, but not every night and nothing worse than having to push the duvet away for 15 mins or so till l cool down.

My biggest frustration is fatigue, oh how l hate that word. If I have a very busy day it is almost inevitable that l am pretty shattered the next day, this has been my biggest battle. l am 70 at the end of this month and you could say that maybe there will be a slowing down, however, l have always been fortunate enough to have endless energy so l do know for sure that this has definitely curbed my life to some degree. I am slowly getting my head around this, not perhaps as quickly as my family would have liked, call it stubbornness, l like to call it determination and strength, so this as l say has been somewhat difficult for me to accept.

Fortunately l have many creative interests so l am not one to become bored,  I am certainly an upbeat optimistic type of person which l am so thankful for, indeed l feel extremely blessed.

l do hope l haven't rambled on too much Rob and this has helped you, even if in some small way.

l too take my Meds Mon to Fri 500mg Hydroxycarbamide and have weekends off. I will be seeing the haematologist at next week ( l think,nothing certain with the Coronavirus), so will find out if this regime is still working well for me.

l trust that you will have a good outcome at your next appointment and as time goes on adjust ok and best of all feel well.

Take good care of yourself Rob

God bless

Jan 

Thanks for your reply. At the moment I am still trying to get as much info as I can. I would be more concerned if I was on a higher dosage but guess I will just have to wait and see.