Hi Everyone On Monday I was diagnosed with this form of blood cancer. I’m having a venesection tomorrow, then will start on my chemo tablets. Would like to speak to others whom are going through this, as really scared and don’t know what to expect. Thanks
Hi Dulieu and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.
I don’t have PV (I think you missed the V) but was diagnosed way back in 1999 with a rare incurable but treatable type of NHL Stage 4a and although my blood cancer ‘type’ is different I have experienced many types of treatments used but not necessarily the exact same drug mix but understand this journey rather well unfortunately.
Many of the blood conditions in this group we’re only reclassified as being a blood cancer in the past number of years, before they were seen as blood disorders.
I am am sure that some of the other members will pick up on your post and as always you can look through the older posts and hit reply to see if they are still looking in.
It’s always good to talk so do call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
To find information covering diagnosis, treatments and pages covering most types of cancers check our Online Information and Support Section.
Always around to chat or just listen.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Hi my name is.Paul and i have PV jak 2 mutated gene since 2013 so.anything you want to ask fire away i am on Hydroxicaban 500mg x 2 sometimes 3 aday
We are indeed a rare breed from fatigue to itchy skin.After bath.or shower i feel your pain and yes its scarry i still am to no cure BIG WORDS but manageable yes it is but positive thoughts.aside normal life possible yes it is but in the words you hear alot now NEW NORMAL . Best advice can give you is.listen to your body and do what it is telling you to do if tired sleep etc .
You will have good days and bad days side effects of tabs and tgerr are some diff for each person but we wont loose our hair or i have never heard of anyone .. But in the.most i live with them.most of the time promise you . Most of the time life is normal.ish work etc but from.time.to.time i have found i have to stop and rest .
And yes everytime you go for results its scarry never going to get a cured thums up time and always wonder if today its flipped 8 years in and still ok ish
In short its shit its scarry and no one but you will know how you feel not even doctor most just wing it on PV so tell them and dont be fobbed of yih have to take control of you and your PV be your own specialist know what is happening keep.notes speak up .But most of all dont feel a fake because others are worse than you we different to.most other cancer people We ARE special ha but we are ill we need help so ask and take it when offered
Anything else i can help with ask away ill tell you what i know or have experianced
So hello PV lets talk
Hi Dulieu I too was diagnosed with the exact same condition on Monday, having a venesection on Monday and full CT wed......meet with consultant in 2 weeks to discuss treatment plan. I'm taking the positives at the mo, long life prognosis a liveable condition.....hoping that if treatment goes well I won't feel soooooo tired. Best of luck and by all means stay in touch....
Hi i have PV jak 2 mutated gene diagnosed in 2013 .. i am.on hydrocarbmoxide 2 times 500mg aday was 3 .. if i can help.in anyway i am.here chat to ask questions wing at .. best advise i can give is tell doctor exactly how you feel dont man up because hey its only PV can cotrol it with a.pill
That is true and yes side effects are not as bad as chemo drip treatment .. but like.everyone.says nowadays its.a new normal not as you where . There are dif treatments and it affects everyone different could just be taking blood does.it from.time.to time .. but listen to your body rest when it says no that not happening .
I have been able to work and carry on a new normal life most of the time and at times everything stops .. tired is not a word i use anymore fatigue is much more the description
Inability to.move exhausted fall asleep on a.cloths line .. but Macmillan nurses . Are simply angels and will help.you through what ever the journey is for.you .... its shit scarry when they tell you you here the word cancer and everything else is just noise
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