I was diagnosed with both Polycythaemia vera (PV) and Essential thrombocythemia (ET) in Oct 2021 and take chemo tablets every other day.
Over the past 12 months or so I have started to get a stiff and painful hip ( like arthritis), then that clears up and I get the same issue with a knee, then that clears up but I get what feels like swollen glands in my armpit for a few days then on to another joint that gets stuff or hurts. And in and on… Just niggles through to pain somewhere in my body.
Is this to do with the Polycythaemia vera (PV) and Essential thrombocythemia (ET), is it just ageing or what? I’m 65 and relatively active walking the dog everywhere day, swimming twice a week, etc…
Thanks for any advice or similar experiences.
Oh @Helenw aren’t we complex, individual beings and therefore perhaps I would find a diary of events would help with the symptoms you have and are experiencing and asking your medical team, perhaps your specialist nurse, if you have one.
Others may be able to share their experiences too.
I will copy your post to the Blood Cancer UK nurses for you as well. @BloodCancerUK_Nurses.
Please do let us know how you get on and be kind to yourself, I bet your dog keeps you active though.
Sorry to hear you have been experiencing intermittent pain. Whilst Essential thrombocythemia (ET) does not normally cause these symptoms, a symptom of Polycythaemia vera (PV) is gout, which can cause pain in your joints. PV Symptoms. It is always best to discuss your symptoms with your haematology team as they are best placed to advise you. Sometimes your chemotherapy can cause side effects too. Do you mind me asking what treatment you are on?
It is good to hear that you swim regularly and walk your dog. It’s important to stay as active as you can and look after ourselves.
I know Essential thrombocythemia (ET) can cause gout but just assumed this would appear in my big toe rather than other joints; thank you for the tip.
My GP diagnosed arthritis in my hip as I had had the problem for months ( and the symptoms fit) but I was perplexed by the pain moving around different joints or soft tissue and also by the occasional feeling of flu like symptoms.
I will definitely speak to the consultant at my next consultation in January and take it from there.
So since we last messaged I have been diagnosed with osteoarthritis which seems to have progressed quite rapidly to the point that I often cannot sleep because of the pain and whenever I stand up from a chair etc. I am often stopped in my tracks by the pain in my hip.
On top of the osteoarthritis, I then experienced an 18 month flare up of historic Fibromyalgia which has now subsided, thankfully.
I want to get on top of the pain if I can so have been cleared by my haematologist to try acupuncture as all this is beginning to lower my quality of life and stamina despite me continuing to swim twice a week, do a stretch class once a week and walk the dog ( albeit the walks are shorter now).
One question I still have is this: apparently only 500 people are diagnosed with an Myeloproliferative neoplasms ('MPN') per year ( if that’s true) but I was diagnosed with both Polycythaemia vera ('PV') and Essential thrombocythemia ('ET'). Is this common…i.e. having two MPNs or is it just unlucky?
Lovely to hear from you. I am sorry to hear about the tough year you have had with your osteoarthritis diagnosis. This sounds really challenging. I really hope the acupuncture helps your pain.
There are around 4,180 cases of Myeloproliferative neoplasms ('MPN') in the UK each year, this includes Myelofibrosis so they are considered to be rare. I have enclosed a link to our information here with further information Understanding MPNs Unfortunately, I do not have data on the number of people who are diagnosed with both Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'), but I would suggest that this is rare. I can speak to our policy team about this if you would like further information?
Thank you so much, Fiona.
If it isn’t too much trouble I would like to know how common or rare being diagnosed with both Polycythaemia vera ('PV') and Essential thrombocythemia ('ET') is, just for my knowledge.
I will also read the info in the link you sent and thank you for sending me this.
I start my acupuncture on Wednesday and will report back!
Kind regards,
Helen
Hope you don’t mind me being nosy about this @Helenw and Nurse @Fiona_BloodCancerUK, I’ve been interested to know about living with both Polycythaemia vera ('PV') and Essential thrombocythemia ('ET'). At diagnosis I was told I had aspects of both but it was closer to Polycythaemia vera ('PV'), hence that diagnosis.
May I ask Fiona, does a double diagnosis mean we literally have both Essential thrombocythemia ('ET') and Polycythaemia vera ('PV'), or more that there are features of both, or is that the Essential thrombocythemia ('ET') is progressing to Polycythaemia vera ('PV')?
From attending a blood cancer conference a specialist in Myeloproliferative neoplasms ('MPN') explained that the usual progression/transformation, if at all, is from Essential thrombocythemia ('ET') to Polycythaemia vera ('PV') to Myelofibrosis (‘MF’).
Hope the acupuncture helps you @Helenw, I’ve heard good things.
Unfortunately, after liaising with my colleagues, I have been unable to find any further information about the incidence of people diagnosed with both Essential thrombocythemia ('ET') and Polycythaemia vera ('PV') for you. We looked at The Haematological Malignancy Research Network (HMRN) who provide statistics for all types of blood cancers within the UK but this specific information is not available. Whilst it does report numbers of Myeloproliferative neoplasms ('MPN') unclassifiable/not otherwise specified, this information is not broken down into sub-types.
I would suggest asking your consultant at your next appointment about this as they might be able to provide further information for you. Sorry, I cannot be more helpful in this instance.
Yes, my understanding of having both Essential thrombocythemia ('ET') and Polycythaemia vera ('PV') is that this is a dual diagnosis. Essential thrombocythemia ('ET') is associated with an overproduction of platelets in the bone marrow whilst the main characteristic of Polycythaemia vera ('PV') is an increased number of red blood cells which thickens the blood. They are however closely related. I would probably clarify this with your consultant @Duncan
Thank you so much, Fiona. I really appreciate your efforts.
I had my first acupuncture session today
(five more to go) and while I cannot put my finger on why exactly, I can say I feel “different” at least. I do think acupuncture is a cumulative effect so I will update you again in a few weeks in case my hopefully positive experience could help others with Polycythaemia vera ('PV') or Essential thrombocythemia ('ET').
Thank you so much for taking the time to explain that @Fiona_BloodCancerUK, so interesting! The haematologist who diagnosed me didn’t really share much, and it was only after reading through my “progress notes” since changing doctors that I saw they’d originally noted “differential diagnostic consideration was given to masked Polycythaemia vera ('PV') and Essential thrombocythemia ('ET')” as I had both elevated platelets and red blood cells during my diagnosis. I just got on with the treatments as I barely understood what my blood cells did! Not heard of masked Polycythaemia vera ('PV') before or since so I don’t think too much about it to be honest, but it’s helpful to know that some of us can have a dual diagnosis like @Helenw.
Ditto for me with my consultant. Not a lot of information given to me at diagnosis and while I didn’t ask any of this at that time, that doesn’t mean I, or any patient, does not want to know as sometimes, one just doesn’t know the questions to ask!
Oh I’m sorry to read that your consultant also did not share much information @Helenw. With hindsight I now realise my first haematologist just hadn’t kept up with his field of expertise and was wrong on a few occasions, so I was fortunate to be able to change doctor to a recently trained expert on Myeloproliferative neoplasms ('MPN'). Like you say, if we don’t know something then how would we know what to ask?! We don’t know what we don’t know, after all.
I’m doing well now, thank you for asking. Nearly 3 years since diagnosis and my blood cells are now behaving thanks to my treatment adapting over time. Long may we live well with these dratted Myeloproliferative neoplasms ('MPN'), Helen!