I’m here with an Myeloproliferative neoplasms ('MPN'): Polycythemia Vera, diagnosed 6 years ago,
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Welcome to the forum. Sorry to read about your diagnosis 6 years ago and hopefully doing well at present.
My diagnosis wasn’t Polycythaemia vera ('PV') but Myelofibrosis.
There are a number of folks on here with Polycythaemia vera ('PV') including the wonderful @Duncan who as a Forum Support Volunteer always offers great support to others on the forum
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Hi @gingerlyone37, welcome to the Forum, and lovely to see you introducing yourself.
I’m happy you’ve found your way here as I’m sure you’ll have a lot of experience to share. If you don’t mind my asking, what’s your Polycythaemia vera ('PV') management looking like currently - venesections, medication, or has it settled to just regular monitoring?
As lovely @DuncanB mentioned, you’re in good company with others living with Polycythaemia vera on the forum. If you fancy a read of what others have shared, there’s a tag pulling together some of the Polycythaemia vera ('PV') conversations on the forum: PV discussions on the forum.
Take care,
Ceri - Blood Cancer UK Support Services
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Hello there @gingerlyone37, welcome to the forum from one survivor of Polycythaemia vera ('PV') to another. Sounds like you’ve been living with a Polycythaemia vera ('PV') diagnosis for 6 years, may I ask how you’ve been getting on? I’ve just passed my 3 year anniversary of diagnosis and am settling into some sort of stability. I hope you are finding your own Polycythaemia vera ('PV') stable and manageable.
Like dear @DuncanB says there are many of us around the forum who live with Myeloproliferative neoplasms ('MPN') such as Polycythaemia vera ('PV') and Essential thrombocythemia ('ET'). Here is further information about MPNs should you like a read.
Dear @Ceri_BloodCancerUK has shared that great collection of different discussions around the forum regarding Polycythaemia vera ('PV') so do have a look through those if interested, I definitely will.
If there’s anything medical you’d like to discuss then the lovely specialist Blood Cancer UK nurses can be called free on 0808 2080 888. If you’d like to look stuff up around the forum then simply use the search box at the top.
Hope that helps a little @gingerlyone37, do please let us know how you get on.
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Hi. Thanks for responding to my post. I am not doing too well. This blood cancer seems to have changed to something more serious, as my symptoms have gotten more severe. I believe I may have moved to Myelofibrosis. What’s worse, my son is not supportive at all. He is behaving as if this is my fault somehow, that I’m not doing something I should be doing or doing something I should have done. He is being encouraged by another person who treats her sister who has dementia, the same way. He seems to feel I’m creating problems for him. He doesn’t understand t he complicated nature of this disease and the difficulty of coping with all of the symptoms.
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I am so sorry to read this @gingerlyone37, that doesn’t sound easy at all.
What has your haematologist said about your severe symptoms? Mine asked me to always let him know if anything changed so I hope yours is looking into what’s happening. Don’'t be shy about letting them know about your changing symptoms.
From what my haematologist tells me there’s nothing we can or can’t do to stop Polycythaemia vera ('PV') progressing aside from sticking to our treatments. Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV') or Myelofibrosis (‘MF’) are not something we cause, they are how random gene mutations affect our bodies.
I was told Polycythaemia vera ('PV') can occasionally progress to MF but again it’s not due to anything we’ve done, just a horrible chance we live with. We don’t choose these blood cancers after all!
I wonder if you have the phone number of your clinical nurse specialist or haematology department? I’m sure they could explain what your diagnosis is and if there has been any change. Then you can ask about any changes to treatments you might expect. Keeping a list of questions and worries is a great way to have them in one place when you speak with your specialist.
Perhaps your son could attend your next haematology appointment with you and voice his concerns to your haematologist, I’m sure it can be explained so he understands how much you’re contending with. You could even share this great Blood Cancer UK explanation of Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN') with your son: Myeloproliferative neoplasms | Blood Cancer UK
For what it’s worth, I know of other forum members who live with MF and have talked about managing it with treatment, should that become your diagnosis. Often treatments for MF are similar to ours with Polycythaemia vera ('PV'). If the treatments cause side effects or aren’t working as expected then our haematologist can offer others as there are many options these days, from my non-medical understanding.
May I suggest you give the Blood Cancer UK specialist nurses a free call, they are really lovely and can suggest resources to support you right now if your son is struggling to. Their number is 0808 2080 888.
You can always share here and the forum can offer support too @gingerlyone37. You’re not alone with any of what you’re experiencing. Do please keep us posted about how you get on and what your haematologist does about those symptoms.
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