I'm new here, so apologies if this is the wrong way to go about things!
My partner has PCV with low iron, we've recently been told his prospects are not very good. He's requested Interferon but they have refused to give it to him because he is only 32. He's been diagnosed since he was 15.
Every time we go to the hospital we see a different Hematologist, there seems to be no consistency of care. One month we were told that if he had another venisection he could die, the following month we were told if he didn't have one he would die.
I'm just wondering if there are any PCV specialists anywhere in the UK that could help or if anyone else has had this problem and how they dealt with it? His symptoms are driving us both nuts! Whilst he has resigned himself to terrible health care and reduced life expectancy I haven't yet!
Any help would be greatly appreciated.
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KatQuinzel
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Hello Kat, I am so sorry to hear that your partner is going through this, and you as well, it must be very distressing for you both. Please can you email me at maz.cd@mpnvoice.org.uk and give me details of where you live, what hospital your partner goes to and how far you are willing to travel. Thanks Maz
Hi Kat, of course it's not the wrong way to do things, you will have seen from Maz's reply we are a friendly bunch and understand what both patients and their relatives go through. I have had Polycythemia since 2012 and many more friends on the forum have had it for much longer and we are alive and kicking! Yes we have our days(and so do our relatives) when we are worried, anxious, feeling a bit down and desperate but we have all been there so keep in touch and do as Maz suggests. You and your partner will get loads of support here.
You are suffering from this disease too so please keep in touch. Sending best wishes and a great big hug cos that's what you need. Aime xx😺
Thank you so much for your kind words its so nice that for the first time in three years I don't feel alone with this! I want to be the best I can be for my partner, i try not to tell him how it makes me feel, I just make sure I'm there for him but to know that people have this and live good and happy lives for many years gives me hope!
I have PV and also initially had really low iron levels.
Sounds like our Maz is on the case but consistent care is vital in my opinion, you are right not to be giving up and you are doing the right thing, it is good he has someone on his side like you.
If there is anything you are unsure of post a question, everyone here is very helpful.
It sounds like a change of haematologist to an MPD expert would be a good idea for your husband, do be guided by Maz. I have PCV, diagnosed 28 yrs ago and was given a terrible prognosis initially... still going strong. There are so many more treatments out there now, and an expert haematologist would be able to balance the pros and cons of treatments at different ages. Good luck. Fee
Take comfort from Fee's post, she has had PV for 28 years. I have had it since 2012 and I think as long as you are carefully monitored and given treatment for your specific disease when you need it, the majority of people go on to live a normal life span. But if things get tough it is important you take charge and ask for treatment as guided by your medics and if not happy, we are lucky to have this forum and access to expertise in our conditions through Maz.
Try not to worry (we all have our moments)! about something which may never get worse or if it does you will deal with it then with lots of support from this forum.
Hi Mark, the information in our booklet about PV says that:
in general, patients with PV who do not progress to MF or leukaemia can expect to have a normal to slightly reduced life expectancy if properly monitored and treated as necessary, bear in mind when you're reading up about the condition though, that in some patients the disease may remain stable or gradually progress over time. This means that you may never experience many of the symptoms and outcomes that you read about - or if you do, it may not be for many years. Many people with ET or PV live normal lives for years at a time without experiencing complications. You will read that ET and PV can develop into MF or acute myeloid leukaemia - life threatening types of blood and bone marrow cancer. Don't panic, as this is rare. If you have any concerns talk to your haematologist.
Our advice is always to speak to your haematologist, as he/she will advise you on your prognosis which can be different to other people with PV or ET, there are many factors that are taken into account, so try not to panic, and as Fee said, she has had PV for 28 years.
Well you poor little sausage. What a horrible worry for you.
However! All is not lost.
I've met young folk of 23, 32, 38 all of whom have PV and all of whom are ABSOLUTLEY fine. I've also met people who've had PV for over 30 years and who are also fine. I'm 62.
Your partner also has time on his side because we all truly believe that a cure will be found in the next ten years, research is coming along in leaps and bounds, it's astounding.
So, for now, what to do.
Where are you? If you're anywhere near Manchester then beetle straight off to the Christie to see Tim Somervaille who specialises in PV. Wonderful - as are all the staff there. I decamped from my local hospital because like your young man I was sick and tired of a plethora of different and useless haematologists, one who even accused me of not taking my medication, because my haematocrit had gone up! What a complete plonker.
There are though, as Maz says, specialists all over the country, so don't waste any time.
Meanwhile, you don't say what his symptoms are?
Itching? - look at what causes it and stop. I haven't had a shower or bath for 5 years, so bad was my pruritis ( itching is called aquagenic pruritis) I also found that alcohol and being dehydrated didn't help. 2 to 3 litres of water every 24 hours is essential.
Lethargy, fatigue.....remember eating well and cutting out all crap ie packeted stuff, is far better than stuffing your system with preservatives, additives and chemicals.
Brisk walking helps to keep circulation whizzing round so if you have a couch potato next to you, get him up - even if he feels knackered - it really will help.
Lots of rest at night, going to bed at one and getting up at 7 won't help.
(Obviously I don't know your lifestyle so forgive me if he's doing all this already! 😊)
Finally, become an expert in PV. Read as much as you can, become familiar with all the terms and medical jargon, I'm not suggesting that you both take over his care, but knowledge is power and t helps to understand.
Thank you so much for your kind words and advice we do live close to Manchester so that's one I will definitely be checking out! and as for his symptoms you've hit the nail on the head! those are pretty much the symptoms we're dealing with. He is a grumpy couch potato though! its difficult to encourage him to take any exercise when he feels so tired all the time!
I've slowly and surely encouraged healthy eating habits into his life so we're doing well on that front! I know his itching is bad but I don't think I'd ever be able to keep him out of the shower - he's such a water baby!!
He's having a hard time with his arm at the moment, he says it feels painful all the time and he has limited usage, this is one reason I'm trying to find a consistent health care professional for him, because none of the hematologists he sees are taking him seriously!
I'm taking your advice on reading everything I can get my hands on and I will definitely be making more use of this forum - everyone is so lovely and helpful!
It's so hard to make yourself go out and walk when you feel grotty, but do try - it might take at least 30 to 40 minutes on the fast trot though before he thinks, actually, I do feel a bit better......or, what about cycling?
You can find Tim Somervaille's email address on the Christie website.
Suggest you email him and see if you can come and see him, then he will ask for a doctor's referral letter.
Don't give up, you can both conquer this but he has to try as well, and it isn't easy in the beginning.
Thank you so much, you've given us both some hope! I've found Tim Somervaille's details and shared these with my partner, also through all of the fab advice on this forum I've identified two potential medications that may help.
We've gone from complete despair to thinking there may be more we can do, the more I read the more encouraged I am!
Absolutely ditto Susana. Chin up! There are hundreds of worse things to have than this, he'll be fine - but you have to be your own project manager so to speak!
Kat, please do not despair. I also have PV, diagnosed in 2015 (after being diagnosed with ET in 2014), am in the UK and have received excellent treatment since diagnosis. If your partner attends a regular heamatology clinic at his local hospital, he should be able to request seeing a particular heamatologist when he checks in. That is what I do, so I see the same doctor; the downside is that it can mean a longer wait sometimes. He should also be able to get a referral to an MPN expert for a second opinion. For a second opinion I consulted Professor Claire Harrison at Guy's Hospital. Interferon seems to be the preferred treatment for younger patients so it would be good to understand better why he has not been offered it. I am on Pegasys myself. Don't listen to negativity, you can live a relatively normal life with this condition. Best of luck. X
I'm trying to help him look into medication as his symptoms have so far been managed just by vennisections but these don't seem to be working any more.
funnily enough he was told that he couldn't have interferon because he was too young? Also he's been told that because his Iron count is so terrible there are a number of medications he can't take.
what has been your experience on Pegasys? is there anything else you've tried that you found helpful?
Sending you both a big e-hug - you are now in The Right Place. Maz will advise you. Keep strong and take care, Sue
Much as I respect the healthcare professionals I don't know why some of them seem to think its a good idea when people are already worried, to frighten them half to death with doom and gloom enough to throw them into a depression.
I was told my condition is incurable (correct) but not to worry because with treatment I could live up to another ten years. I was horrified as I was not yet even a grandparent. As time has passed I have informed myself through many sources including this excellent websitd full of people going through the same as I am. Five years down the line from diagnosis I am not on a countdown. I have completely disregarded my prognosis. My treatment has kept me extremely well and I follow my own instincts as to what is good and bad for me. I am on hydroxycarbamide which doesn't seem to give me any side effects. I now have a beautiful little granddaughter and the strong will to live as long as possible to watch her growing up.
please excuse where I have typed websitd instead of website. For some reason I cannot correct it. Don't know if it is the fault of the website or my phone. A grrr moment. 😊❤
Its wonderful to hear this! My partner has resigned himself to being a ticking time bomb! I hope that through educating myself and chatting to more people like yourself I can bring his hope back and help him to fight again! I'm so happy for you that you are doing so well and clearly still loving life.
I think after reading a lot of these replies I'm going to start taking what his hematologists say with a pinch of salt!
My daughter was diagnosed with ET when she was 15 and is 18 now and has PCV, she is taking hydroxyurea 1300 mg and it has brought her platelets down and has kept them stable for the past few weeks. We are in the United States in California, she goes to the Cancer Institute
Hi Wandahburke, thank you for your reply. How is your daughter coping with the hydroxyurea? I'm doing some research at the moment on meds that may help my partner, in his last consultation we were told that his only option was vennisection or Interferon and they wouldn't give him interferon!!
My advice is go somewhere where they know what they are talking about NOW!
Unbelievable that you have been told such nonsense! He WON'T die with or without a venesection.
I was diagnosed at 37 with ET. Mine has now changed to PCV, I am now 41. Some days are hard, bloody hard. I have just had a week from hell, with migraines every day, feeling completely drained, I felt awful but I dragged myself out walking my dogs for about 3 miles everyday. It did make me feel a bit better.
Seriously though, please go and see an MPN specialist, my experience is that bog standard haematologist is not the right person to be treating patients with our conditions.
I really hope you soon see a bit of light at the end of the tunnel.
Thanks Ruby it is difficult when you feel so drained, there are days I look at him and my heart goes out because I can see how difficult it is for him to keep going, I suffer with fibromyalgia and anemia myself so can understand a small part of what he is going through.
I'm glad it's not just me thinking that this standard of healthcare is unacceptable and I'm really encouraged by every ones responses on here that there are people who can help
It's scary when all we are being told is that he's not doing very well But then offered no solutions!
Thank you for your well wishes, I feel more empowered to help him now I can't take away his difficulty to cope with what he's going through but I can educate myself and help him get the care he needs
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its so nice that for the first time in three years I don't feel alone with this! I want to be the best I can be for my partner, i try not to tell him how it makes me feel, I just make sure I'm there for him but to know that people have this and live good and happy lives for many years gives me hope!
