Hi,I was diagnosed with Polycythaemia vera (PV) last year,it came as a shock as my Doctors had said my bloods were okay even when they came back abnormal.Im on 500mg Hydroxycarbamide,which has this under control and also has had a good effect on my Psoriasis,which I’m clear of.This came on top of a Heart Attack which I had three years ago this month,I have a stent fitted and medication.
This has resulted in Heart Failure but I cope really well,and I turned 70 this year.
I have Arthritis and my left knee has had endless steroid injections,then I had an MRI which showed ,bony growths and the cartilage has gone.I was offered a knee replacement,which I had six weeks ago.I was very apprehensive re the operation,the Blood Cancer and Heart problem.Thankfully I’d read on this forum that another lady had had the knee replacement,so I went ahead.
I’m doing really well,my blood count increased a little but I’m having it checked again this month,I’m sure it will be fine.
So this is to say ,go for it, I was well looked after and when fully recovered,I’ll be able to walk more ,which I love.Sometimes we fear ,the fear instead of just getting the most out of life .
Hello @Wuff400
Welcome to our forum & thank you for your post.
We are so sorry to hear about your diagnosis of Polycythaemia vera (PV), we can imagine this was an overwhelming time for you, and sorry to hear about your heart failure and arthritis. If you’d like to talk over things with someone, please do get in touch on our support line on 0808 2080 888.
We’re glad to hear that you have found reading about others’ experience on the forum helpful and that you are doing well.
Keep posting and keep us updated!
Take care,
Emma (support services nurse)
Hi Emma,Thankyou for your good wishes.Im doing well ,my bloods have returned to normal so another checkup in eight weeks .Then I go back to three months check ups.My consultant has been brilliant and I’m feeling more normal and the knee is doing okay.I am fortunate I have no side effects of the chemo tablets ,which I will take forever.
That is great news @Wuff400 ,thanks so much for letting us all know.
Really look after yourself though and keep posting
Hello Erica
I’m new to this forum and have just posted about the hurdles I am having to jump to get fit for a much needed hip replacement (I am recently diagnosed with essential throbocythemia).
I’m very pleased to know that your procedure went well and that you can resume your normal life. I had both knees replaced 11/12 years ago and it transformed my life for the better, until this present hip problem.
Best of luck to you for the future.
Hello Prudie- I hope you get your hip surgery soon, regain full mobility and make a very good recovery.
My Essential thrombocythemia (ET) came to light when I had pre op tests before a second knee replacement. Having also had raised platelets when I had my first knee replacement, presumed to be related to arthritis I suppose, my surgeon referred me to Haematology for tests and my diagnosis of Essential thrombocythemia (ET) was made.
I had to wait for a while after starting Interferon treatment to get the platelet count down before I could have the second op. but only about 6 months or so. Having my mobility restored has made a huge difference to my general health and quality of life and being treated for Essential thrombocythemia (ET) has meant that I no longer suffer from some symptoms which I had not even realised were caused by an illness- tiredness, headaches, ocular migraines, leg pain and restless legs.
Best wishes, Fiona
Hello Fiona
Thank you for your encouraging reply. I am, in fact, a veteran of two knee replacements 11 and 10 years ago. They transformed my life for the better and I have been fitter and healthier than ever in my life, until now. I started having hip issues a while ago. My GP spotted the high platelets in a routine blood test linked to my naproxen prescription, but it took haematology over a year to diagnose me. I was already triaged for surgery when I got the diagnosis, so I have been past ready for many months. I am on hydroxycarbamide, whch has worked well to bring down my platelet levels. The concern is that, when I come off the chemo pre-surgery, as someone recently diagnosed, I may well have a platelet bounce, so the whole thing has to be carefully balanced. Now waiting for a conversation with the haematologist at the private hospital where I’ll be having surgery. He’ll be part of the team, so I’m trying to be optimistic. He is, apparently, a bit of an expert in MPNs, so I may get a better haematologist out of the whole ordeal.
I was very interested in what you said about ocular migraines. I have lived with these since I was 18 (73 now) - no headache, just the aura. I have been getting them almost daily in recent years. Fascinating.
I think my main problem at the moment, is that a condition which is hardly real to me - I have no obvious symptoms and no side effects from the treatment - is getting in the way of solving something which is all too real and which has effectively shut down my life. Trying to stay rational and optimistic!
Best wishes to you
Prue
Hi Prudie- sorry I didn’t refer to your knee replacements, I did realise that you had them.
I agree about the diagnosis- I just got my Essential thrombocythemia (ET) diagnosis in 2023 and it has taken some time to get my head around it- still haven’t really, but I feel quite positive about the future. It did seem surreal as I did not knowingly have any symptoms. To get a diagnosis of a rare and chronic condition with the ‘cancer’ label, which one has never heard of, is a pretty big concept to take on. I think my way of dealing with it, certainly initially, was to read up (proper studies etc, not Dr Google) and educate myself as much as possible about the condition. It is pretty interesting!
I find this forum useful, and also Myeloproliferative neoplasms (MPN) Voice which I know the moderators here recommend too.
Best wishes for your treatment and I hope you get those platelets down quickly. I started on Peg interferon alpha 2a when Essential thrombocythemia (ET) was confirmed- I was wary of the Hydroxycarbamide/chemotherapy option and was able to discuss it with the consultant who agreed on Interferon. Luckily I seem able to tolerate it pretty well and it is keeping the platelets down.
All the best, Fiona
A funny story about migraine aura. I started getting migraines in my mid 20s, usually the aura and vision disturbance, but sometimes followed by a long lasting headache. I had an interesting one when I was in my late 20s. We were in France, just for a day trip with our toddler and baby, walking round Cap Nez Gris. I had a hallucinatory experience- my feet, in white shoes, looked as if they were miles away and everything was skewed in scale, I felt like a giant lumbering about. We made it into a café to sit down, then the nausea, light intolerance and a humdinger of a headache. I had to go and lie down in the car until we left in the evening to get our ferry. I found out in my 40s, from the neurologist I saw about the migraines eventually, that this was ‘Alice in Wonderland’ syndrome- first time he had met someone who experienced it. I wonder if there is a connection between susceptibility to migraines and Myeloproliferative neoplasms (MPN)/ gene mutation?
Best wishes, Fiona
Hello Fiona
The migraine aura is a very strange thing. I haven’t heard of Alice in Wonderland Syndrome or experiences like yours, but I have had wierd hallucinations. During one episode I announced that the curtains were talking to me. I also have temporary aphasia. During another I couldn’t understand why my husband wouldn’t give me the umbrella I was asking for. Apparently, I was actually asking for the ironing board. I am very grateful to have escaped the screaming headaches, though. I would be very curious to know how/if it’s related to my Essential thrombocythemia (ET). However, I have also been diagnosed with epilepsy (grand mal) (though have had only two seizures, four years apart and nothing for two years) and my neurologist assures me that it is unrelated to the migraines. I think he just means that there is no empirical evidence of a link.
Meanwhile, I wait for the doctors to sort me out for surgery. The anaesthetist in my case was also very interested in my condition. In fact, he was happy to proceed, which is why I was given a date before it was scuppered by the haematologist. I live in hope.
best wishes, Prue
Hello Prue
I am rarely on this forum, but noticed your last message again and wondered how you are getting on.
I hope that you are getting sorted for the operation- also that your migraines settle a bit. I have not had a migraine episode since I started on treatment for Essential thrombocythemia (ET) (interferon alpha 2a) two years ago I think. I wonder if there is any connection between migraines and Myeloproliferative neoplasms (MPN)?
Best wishes, Fiona
Hello Fiona
How kind of you to ask how I am. Like you, I’m not often on this forum. I’ve tried to remain sane by not thinking about my ailments.
I’m delighted to say, that I’m getting ready for my hip surgery on 10th November. It was only confirmed last week. My Essential thrombocythemia (ET) treatment has gone very well. I’m on a minimal hydroxycarbamide dose, but my platelets are now comfortably stable in the normal range. It also appears that the treatment has had no adverse effect on my haemoglobin and white cells either, which is good news for my post op recovery. As far as the Essential thrombocythemia (ET) is concerned, once I am all healed, I will be on the long-term monitoring pathway. I am planning to get back into healthy eating and exercising as soon as possible, which will be good for dealing with the Essential thrombocythemia (ET) and the joints. I intend to be as fit and healthy as possible by the Spring.
The migraine auras have settled down quite a bit and are now much less frequent in spite of the stress I’ve been under. My haematologist isn’t convinced of a link with the Essential thrombocythemia (ET).
I hope you continue to be well.
Thanks again
Prue
Hi @Prudie I will be thinking of you on the 10th Nov,
Take it steady
Erica
Thank you so much.
Prue