Blood counts gone up

[RosemaryHarper]

I am being treated by a haematology team for PV and rarely get to see the same haematologist twice - the doctor I saw at my latest appointment has said that it is 'Unsurprising that the disease is slipping out of control on 500mg of Hydroxycarbamide three times a week' which is the dose that another member of the team put me on 2 months ago. My Haemoglobin, Haematocrit and platelet counts are all higher now than they were 7 months ago when I first went onto Hydroxycarbamide. My dosage has now been increased again.

I have had quite a severe reaction to Hydroxy - spending a lot of time in bed or having to lie down, feelings of flu, blisters, mouth ulcers etc but my haematologist denies that these symptoms are as a result of hydroxy. He also says that Ruxolithinib is not prescribed for treating PV. I have had to give up work, rarely drive, and hardly go out now - no travel or holidays.

I now feel that the last 7 months have been a waste of time as I am worse off now than when I started. I have been to see my GP today to see if I can get a referral to Dr Harrison but he says that he has to write to my current haematology team to say I am not happy with their treatment and for them to make the referral. I am worried about this as I do not want to appear critical. Does anyone know of another way to see Dr Harrison to get a second opinion?

[Jasbak22]

My gp contacted guys directly for a second opinion don’t think your current Haem needs to know anything about it surely that’s what a second option is?

[francesb]

Hi, I would show your doc the patient information leaflet that comes with your Hydroxy capsules, I think you'll find your symptoms/side effects listed there if not they are certainly discussed online on numerous websites, Google will show this. I am sure you have the right to be referred to your nearest mpn specialist which would be a start, just tell him this is what you want. Maz may be able to tell you who this is. Good luck, Frances

[MPort]

Dear Rosemary, it is very sad to read about your situation. You have had 7 miserable months but now that you have contacted this site you will get helpful replies to guide you.

I have PV 12 years and the first two years were challenging. I found US forums that were very informative, just like this one which didnt exist at the time. I realised my very kind local haematologist was not familiar with PV. So I got a private referral to Prof Harrison. I wanted quick analysis of my PV. Then I had the fun of going back to him with the new options. But he went along with them, bless him.

As another person has said your mouth ulcers etc are probably a result of the Hydrea. Not to know this and to suggest increasing the dose is odd. Your GP can give you a second referral and does not have to copy your existing haematologist. But what if he does? You see one of a team. I don't imagine it will cause them any worry. But for your present situation the sooner you see one the better.

Keep asking questions and finding out more. This has helped me considerably.

Good Luck

Mairead

[Mazcd Partner MPNVoice]

Hi Rosemary, I am sorry to hear that you are having these problems, you are entitled to ask for a 2nd opinion from another hospital/consultant, but it may also be worth letting your current team know why you are unhappy, as you said you are being seen by different consultants who each have told you something different, so let them know about this and how it is affecting you. If you would like to email me at [e-mail] and let me know where you live I can see if there is anyone nearer to you. Best wishes, Maz

[Sallush]

I had similar issues at my local hospital. I kept raising potential side effects of the condition/medication which they denied was connected. And yes, I never saw the same consultant. I even asked for a bone marrow biopsy because of the bone pain I have and was told I didn't need one because the blood results were fine. I informed them that I would be asking my GP for a referral elsewhere as I was unhappy with their treatment. I've had PV for about ten years. I've had significant blood clots - but this wasn't enough for them to investigate further. Tell them you're unhappy and will be seeking a second opinion elsewhere.

Best wishes and good luck.