Thank you Duncan for all your support it’s much appreciated. I will let you know how the blood is behaving
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Got blood results back, they are slowly rising but not enough to go back on any medication so having more bloods in 4 weeks. I thought that not being on any medication for the last few months my blood counts would be going haywire does anyone know why they are taking so long to rise, not that I’m complaining but I just don’t understand how all this works yet
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Hello @Jan63, nice to hear how you’re doing. Sounds like your Polycythaemia vera (PV) is behaving pretty well without any need for hydroxyurea, yay! This would be my preference, but I’ll continue with daily hydroxyurea for now.
I was told by various phlebotomy nurses and my (now former) haematologist that our blood cell numbers change and will go up and down due to stress, diet, and other health factors.
Apparently there’s not always a neat correlation between good health = lower blood counts, bad health = higher. If your doctors have said that slight increase in your blood counts is fine then I’d take that as a good sign.
It’s always worth asking your specialists though. Perhaps they’re waiting to see how your body responds to no hydroxyurea before deciding on future treatment? If they’re the sort of doctors to share their reasoning then ask away I say!
I hope it continues to go well for you, do let us know.
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Hi @Jan63 , @Duncan has given you a great response.
Yes, we are all very complex individuals and our blood tests certainly do fluctuate.
It is definitely a question for your medical team and please do let us know how you get on.
Be kind to yourself
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Hi Everyone, I have just been told I have Polycythaemia vera (PV) after a heart attack in 2023 followed with cancer of the womb and radium treatment. It was found on routine blood test after my operation. I have been put on Hydroxyurea strait away. I dont have many side effects except fatigue and occasional hot flushes. It is a lot to get your mind around when you are told you have Polycythaemia vera (PV).
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Hi a great big welcome @Carolemavis I have replied to your other post.
Diagnosis really is a lot to get your mind around, please don’t underestimate the effect of shock, and in your case accumulated shock.
I also found the actual language hit me too. Polycythaemia vera (PV) aren’t words that I had come across until our forum.
I have Chronic lymphocytic leukaemia (CLL) and when I was diagnosed I just saw the words in fluorescent with zig zags around them and I felt that I was in a bubble with the world going on around me.
Really be kind to yourself and please do keep posting
Just a little update. Started Ruxolitinib in May this year after my blood counts going back up and have stopped this a few weeks ago again due to my blood counts taking a nosedive again. My haematologist has said a bone marrow biopsy is needed as he wants to see if I have Myelofibrisis instead. Since coming off medication I have had a lot more bone pain and just feeling unwell more than usual with no energy, I now appreciate how well I did feel on meds but didn’t realise it. Will let you all know how things progress
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Hi @Jan63 good to hear from you again, well I don’t know what to say but sorry to hear that you are currently feeling so unwell with no energy.
Please do let us know how things progress.
Be very kind to yourself.
Hi
Coping with Polycythaemia vera (PV) is very hard at times, my body has played another of its tricks and out of the blue an old two inch bruise on the front of my shin just above the ankle started to bleed internally. The area became swollen and hot to the touch. The discolouration spread to below my ankle and around to the back of my leg. After a three hour wait the area had cooled to the touch and was told to elevate it and apply cold compress I.e. a bag of frozen peas.
I have been feeling very very tired, too tired even to cry. I did not have a consultation with the Haematologist as arranged as the nurse at the Medical Centre had put my blood in the wrong tube for the test he had requested. The fatigue is getting much worse some days I just have to spend the day dozing in my chair. My Jack Russell seems to have an excellent time system and wakes me for lunch and tea and bedtime. My son in law has installed a pot watering system as I lacked the energy to water them with a hose I have 36 pots in my paved back garden, magnolia, roses, dahlias, lilies etc. I can’t think why I didn’t have it installed years ago. The dog has got used to my walking her on my mobility scooter, I always feel a little better after being out side, that is until I am hit by another wave of fatigue.
My daughter took me out to lunch on Saturday and laughed when i ordered a prawn! Crayfish and smoked mackerel salad without any salad.anything green sends my INR completely haywire. I had the small plate meal but still struggled to eat it, my appetite is decreasing monthly. I have discovered Rye and Sunflower seed bread it makes delicious toast with dark Oxford marmalade for breakfast and helps with bloating. A lovely start to the day. Marylin
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I can only sympathise with you as I feel the same as you do, can I ask how long you have had Polycythaemia vera (PV) for as I was diagnosed November 2023 and the past 10 months have been the worst. I have my husband and 2 children at home with me and I know I wouldn’t cope if I didn’t but your wee dog is a treasure and how uncanny it is that he can understand and helps you in some way. Haematology appointment tomorrow so hopefully they put me back on Ruxolitinib as it did make a difference to the amount of bone pain and fatigue I have, didn’t appreciate how well I felt until I stopped the meds a fortnight ago. Hopefully you will get a haematology appointment soon.
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Oh @Marylin I am so, so sorry to hear, that bruise seems really horrendous and costing you a fortune in frozen peas.
As for the fatigue I think when you say that you are feeling too tired to even cry you describe it so, so well.
As for your haematologist appointment, I think nearly all of us have had that experience in some form.
Your doggy is a clever character and far better than an alarm clock.
I always have a picture of your lovely garden in my mind and your son in law is a star, isn’t he.
I did laugh at your lunch with your daughter, I agree personally I find it difficult to digest green salad and dressings
However your toast and marmalade, sounds wonderful.
Please do keep updating us and be so, so kind to yourself.
Hi @Jan63 please do update us after your haematology appointment.
Isn’t it interesting I also never realise how good or bad I felt till I feel differently.
Look after yourself and please do keep posting
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Hello Jan63
I have had Polycythemia Rubra Vera for nearly 4 years. I think I have had it for several years before as I suffered from clots in my leg, my lung, my portal vein to my liver and in my bowel lining. Ihave always had less energy than my friends. Polycythaemia vera (PV) seems difficult to diagnose I was becoming aware that the GPS thought I was a hypochondriac telling me I had acid indigestion twice when I said I felt most unwell. Ignoring a blood test that said I had a clot until I had a clot removed from my carotid artery by a neurosurgeon who ordered blood tests when I did not make a good recovery from the operation.
I suspect you are a lot younger than my 80 years. I would think it ver difficult to run a household suffering from Polycythaemia vera (PV) the fatigue is. Utterly destroying. I take Hydroxycarbamide and many other pills including warfarin and aspirin. Other blood thinners did not prevent clots and until recently have managed a reasonable quality of life with the help of my. Personal carer, friend and treasure. I have also developed pulmonary fibrosis and pulmonary hypertension which has. Severely affected my mobility .
My advice is to write down every thing you want to discus before your haematologist appointment and if possible take someone with you. Also accept any day ro day help offered, I find I have to plan my days so that I don’t get over exerted. Forget trying to do something last minute however tempting, you can’t enjoy an anything when. You are fatigued. Fresh air is the best medicine of all. With the news yesterday of the research regarding stems cells I think there is hope on the horizon for a breakthrough. Take care of yourself. Marylin
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Hi Marylin
Thanks for the reply it is always good to hear how others are getting on and dealing with this.
I turned 60 last year and within a fortnight I had a TIA which led to more blood tests and then the diagnosis of Polycythaemia vera (PV).
My husband has learned how to use the washing machine and hang the washing out and generally doing everything I have been doing for the past 40 years,I don’t think he realised until now just how much needs doing around the house. I find it really hard just sitting watching and not being able to do much.
Had my haematologist appointment this morning, going on Monday to get 2 pints of blood then a BMB as he can’t figure out why my bloods are behaving the way they are and this should provide the information as to whether it is Polycythaemia vera (PV) or MF.
Take care.
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Hi @Jan63 please do let us know how you get on and really look after yourself
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I am so glad your husband is being supportive. Mine was wonderful, he seemed to know when I was exhausted and would turn his hand to everything domestic. When I married him he couldn’t even clean his shoes and used to cube the Sunday joint, his mother did everything for him.
As I remember it I had several blood tests from JAK2 to a snake test to confirm I had Polycythaemia vera (PV). It appeared that two of my genes had commuted causing my bone marrow to produce too many red blood cells hence the clots. I do hope you get your results soon, I hate having to wait whilst they decide what is what. I had never heard of Polycythaemia vera (PV) until I was diagnosed. Most of my uncles and male cousins have had cancer in various forms but not Polycythaemia vera (PV). Marylin
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Feeling a bit sore today after my BMB yesterday, will have to wait approximately 3 weeks for results so keeping my fingers crossed. The 2 pints of blood I got hopefully kick in today and I have a wee bit more energy , will keep you all posted
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Hi @Jan63 be very kind to yourself today.
Thanks Erica I will try
It is so nice to know we are not alone in this journey we are all on it is so different for everyone but in the end knowing its not just me being difficult and it is a real cancer with real problems just because you cant see it or hear about it doesnt mean its not real and hard to deal with. We just need to be kind to ourselves and this is something I am slowly learning to do. Take care 
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