Diagnosed yesterday

[Angel-a]

Hello, approx 4 years ago I was diagnosed with Myelofibrosis and did my best to simply not think too much about things and get on with living. However after a worsening of symptoms including recent TIA further bloods and Bone Barrow Biopsy the original diagnosis has been changed to Polycythemia Rubra Vera. I’m feeling so overwhelmed by this and unable to cope with what to me are debilitating symptoms of fatigue amongst others. Apologies for this post however I am aware I am firmly sat on my pity pot.

Thank you

[Erica]

Oh @Angel-a that is OK to be sat on your pity pot, you have had a another diagnosis which has come as a great shock to you and as you say you feeling very overwhelmed and are having debilitating fatigue.
Have you got an appointment coming up?
If, so this will give you the opportunity to write down all your fears, questions, symptoms and practicalities for that appointment. perhaps be pleasantly assertive.
I have another blood cancer and I have learnt to live with my fatigue and manage my life around it.
Here are the Blood Cancer UK details which might help
Fatigue | Blood Cancer UK
Be very kind to yourself, pace yourself and give yourself time, please do keep posting with any questions

[Angel-a]

Thank you for your kind words Erica, it’s so hard to explain to those who have no experience of it the impact my fatigue has upon day to day living, I know people get bored with hearing me talk about it!

My next appointment with Haematology will be this coming Tues or Wedn to commence oral chemo. I will do as you suggest and make a list of my more difficult symptoms and ask for support.

Thank you, Angela x

[Heidi_BloodCancerUK]

Hello @Angel-a
I am so glad you have found the Forum and have posted how you feel - this really is the right place to do that, and have no judgement from anyone.
It certainly is understandable that you feel so overwhelmed, not only do you have a new (dual) diagnosis, you have extreme fatigue too. Please do not apologise for feeling like you’re sat on a pity-pot, you have lots to manage at the moment and I don’t see your post as needing pity.

It’s good to know that you have an appointment coming up on Tues/Weds, do let your nurse or doctor know how bad your fatigue is, and how it affects you on a day to day basis.
In case it is helpful, you could use an Myeloproliferative neoplasms (MPN) symptom tracker like: MPN10 tracker (please note there are other drug company tracker, but this one seemed well worded to me) and this link is another tracker, specifically for each Myeloproliferative neoplasms (MPN), that is on the MPNVoice website: MPN10-ET/PV/MF. You could write them out if you don’t have a printer and your consultant may have copies in the clinic, so do ask about them.
It is well known that people with Polycythaemia vera (PV) and MF can be anaemic, and often starting medication can improve the anaemia, which then improves the fatigue. Hopefully once you start your treatment you’ll start to feel much better, but do let your team know how you are doing.

You would be more than welcome to call our support line if you want to talk any thing through before your appointment (or afterwards), we can listen and support you, and I promise we won’t get bored of you telling us about your fatigue.
Take good care, Heidi.

[Duncan]

Hello there @Angel-a, welcome to the forum. I’m so sorry to read of that TIA and new diagnosis with Polycythaemia vera (PV), what a lot of worry I imagine you’re feeling. How are you doing since the TIA? I hope you’ve come through it unscathed.

Last year I was diagnosed with Polycythaemia vera (PV) and unfortunately that debilitating fatigue you describe so well is familiar to me too. I hate it! Isn’t it rubbish?!

Fatigue is frustratingly common for us living with Myeloproliferative neoplasms (MPN). Something like 80 % of us will experience fatigue and it can be disabling.

Have to admit that I didn’t know we could have a diagnosis of MF that can change to another Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV)—from what I’ve read it seems to be the other way round. Or maybe you live with both diagnoses?

Here’s the Blood Cancer UK information about Polycythaemia vera (PV) which I find really helpful: Polycythaemia vera (PV) | Blood Cancer UK

From what I understand from my non-medical perspective and from supportive advice my haematologist has shared, Polycythaemia vera (PV) can be lived with into normal old age with some adjustments. It shouldn’t shorten our lives, and we’re more likely to die with Polycythaemia vera (PV) than from it. This reassures me that I can live a long relatively normal life.

But the fatigue… I still feel it and sometimes have to change plans as it’s just too strong. You already know the dreaded fatigue. Mine became pretty disabling after I started taking daily hydroxyurea but faded to a tolerable level after a few months. I found gentle walks in nature helped a lot and doing yoga at home when the fatigue was worst gave me some energy, rather counterintuitively.

Some advice a lovely forum member shared that I try to live by when the fatigue is too great is to rest from whatever activity I was doing and to resume it later. Frustrating not to always be able to get on with stuff, but I’ll try to get back to it once I’ve regained some energy. Seems to work, mostly!

Perhaps you had some tricks that worked during your time living with MF, would any of them be transferable to what you’re experiencing now? Maybe this new diagnosis could be reframed to feel something like a ‘fresh start’ with the potentially different range of symptoms to be mindful of?

Anyway, the forum is here for you @Angel-a and you’ll find many folks here living with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV), Essential thrombocythemia (ET) and MF who share our experiences that might help you feel less alone with that grim-sounding fatigue.

Taking a list of queries and notes about your symptoms to appointments is a great idea. You’ll be able to see patterns emerge in your notes over time that way too. Do please let us know how it goes this week with your specialist @Angel-a, thinking of you.