I have never been on a board before. I have always been healthy all my life I have never even had surgery or any kind of procedure. I've been feeling like something is horribly wrong with my health for the past five months. I told my doctor this and went to see him once a week he kept acting like nothing was wrong with me finally when I call for an appointment I saw another doctor within the group because my primary care that I usually see was unavailable he noticed that my monocytes were high so I was sent to a hematologist 9 days ago after a blood draw he said my monocytes we're not as high anymore but that he is suspected that I have polycythemia vera because I have too many red blood cells and I clot too much. I got home and started researching I was really freaking out because it's a blood cancer , I've been waiting for the jak2 mutation lab work to come back because he had me have a second draw that same day. I can't believe how long it is taking I have read some of the other post and I feel just like the woman (I'm sorry I forgot her name) that said she had no energy and couldn't even take a walk and it was driving her crazy waiting. I had to quit my job last month I felt so bad. I just don't know what to do anymore and I am really scared. I hope I do not have polycythemia vera but I'm pretty sure I do because I have all the symptoms. The waiting is the hardest part just like the Tom Petty song says! Good luck to all of you. I just can't believe this is happening and I want to know for sure. Thx 😓😞😔
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Tank66
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Sorry to hear how you are feeling right now. You will not always feel this way. Waiting for test results and a diagnosis is the most anxious part of this whole process. We, on this forum have all been there, so understand how you are feeling.
Yes, PV is a blood cancer, there is no getting away from that; but in medical terms the condition is defined as ‘chronic,’ which means long term. There are many people on this forum with PV who can testify to that. If you are diagnosed with PV, the immediate objective will be to lessen your risk of thrombotic events.
If you are going to ‘google’ please look up reputable sources; MPN Voice Uk, Patient Power, USA.
Hello. I'm sorry to hear how anxious you're feeling. I'm still on the diagnosis journey which is incredibly stressful as many people will vouch for. ET being a diagnosis by elimination takes its time unfortunately; but as long as you have GP/consultant on same page, they'll do the tests that are needed. I have found being on this site and reading credible journals really helpful and it has allowed me to have detailed conversations with my GP and haem - I have found comfort from this as I personally like to know the ins and outs and to be fully informed. I did have to wait 7 weeks for my JAK2 result (which was negative) and now awaiting CALR, MPL, various other further blood tests and I have a BMB next Thursday. My referal to the haemotologist took place last October. I've certainly had to acquire patience! This site and the lovely people on it has been a massive source of support though.
Hold on there! I know it's worrying but I too have been healthy all my life and hardly catch so much as a cold but at 51 was diagnosed with PV and I'm Jak 2 positive. It was a shock because of the C word but my specialist doesn't call it that. It's a blood disorder according to her. I have had it for 6 years and hardly feel any effects from it and I'm on Aspirin and have blood taken occassionally. I know this is not the same for everyone. diet and lifestyle are really important. Loads of veg and some fruit, less processed food. Stay highdrated. I still drink red wine in moderation and dark chocolate as it has loads of good things in it! I do understand how you feel but it is manageable and life expectancy is pretty much the same as other peoples. This forum is great. Can't imagine how it was before the internet! Good luck
Hi Tank66 I was finally diagnosed yesterday with JAK2 EXON12 mutation (I wrote that as though I know what any of it means) and I was relieved, yes relieved!!! It was discovered during a routine base blood test for new medication for psoriatic arthritis and psoriasis. I had postponed that appointment because I was going on holiday from the UK to Mexico (so long haul). As it turned out had I attended that appointment I would not have been allowed to fly because my red blood cell count was dangerously high and I could have easily developed a DVT or something similar. Please view this diagnosis as positive because aside from the venesections (which don't bother me) and taking aspirin I am now safe to fly again and have felt no symptoms of this condition whatsoever. The whole thing has been remarkably positive from the Haematologist to the Haemophilia ward (where the venesection is carried out), I am in the UK so I can't speak for any other country but I would certainly not describe the process as negative at all. I hope some or all of this will put your mind at rest and let you relax and not worry. I am now being tested for Haemochromatosis which is a condition where the body tores too much iron but, because venesection is the treatment for that also, it is being treated by accident.
Please try not to worry (although I understand) as you will find if the diagnosis comes true that you will feel loads better once the blood counts are under control. Before my diagnosis I had got to the point I couldn’t walk 100 yards without feeling dizzy and exhausted. After 6 months of venesection I was back swimming and golfing. That was 9 years ago. I have good days and bad but on the whole can function well. Hope things go well for you
Hello Jamie, I am so sorry you are feeling anxious, this is definitely the right place to share your worries and ask questions. The C word is very frightening but I don’t ever think of it as cancer. I have polycythemia and have had it for 26 years! I live a normal life, although I remember in the beginning I was so tired I was dragging my feet, then I had medication which helped me. I try to stay healthy as much as I can by eating healthy food, avoiding processed food and I also try and exercise as much as possible. When I feel tired I rest then try to do some exercise.
Once you have your result you could ask to be referrred to a specialist.
welcome to our forum, we do understand how you are feeling, it is a very stressful time waiting for the test results, and weeks seem to last forever, but in the meantime have a look at our website mpnvoice.org.uk, there is lots of very useful information on there that you can trust, also look at some of the videos, they are of patients and specialists talking about MPNs and medications, mpnvoice.org.uk/about-us/vi... I am sure this will help you, I can also send you some of our booklets on ET/PV and MF and the different medications, email me at maz.cd@mpnvoice.org.uk. I can also put you in touch with a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication, it can really help to talk to someone who understands how you are feeling.
Hi Jamie, I echo what others have said. I have recently been rediagnosed but have spent 6 years thinking I had Polycythaemia Vera. It is not a death sentence and you will get to the stage that you feel you more control of your illness. As others have said, there are a lot of people alive and kicking after years of PV. Someone once described it to me like a football league; cancers like breast, bowel, etc would be division 1, at the forefront of cancer, whereas PV would be away down the divisions and not an aggressive team! Hope that makes sense.
Everyone worries waiting for results but it’s important to realise there is no point wasting energy worrying about things you can’t control. If the worst scenario is that you have PV, as long as it is monitored and treated, you can expect to live a normal length of life.
Yes the symptoms are a pain but they are made so much worse by worry! Have a look at the moodgym website . I found it really helpful to give me tips in dealing with my emotions. How you are feeling is directly related to what you are thinking so I try to think of eg my grandkids giggling about the tricks they’ve played on me or similar happy thoughts and I feel better. Another tip which works for me is to watch a hospital programme where kids or very ill people are coping well with their lot despite their prognosis. I may be daft but that always puts things in perspective for me.
Take care, keep in touch and let us know how you get on. Do as Maz has suggested re a buddy and trustworthy information. Trust me you’ve done the best thing for your illness - you’ve posted on this forum!
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