Hi,
I hope everyone is doing well. This week I see the consultant. My doctor has explained that I have an enlarged spleen with Polycythaemia vera (PV). Current I take aspirin, but I’m thinking that I could require some treatment. Wondering if people have something similar and what treatment they have.
I appreciate that we are going to require different treatment plans.
Thanks,
Ian
Hi @Jonesi I will copy the Blood Cancer UK information on Polycythaemia vera (PV) which might be helpful for you
Polycythaemia vera (PV) | Blood Cancer UK
Others may be able to share their experiences for you,
I always write my questions down first, although it can be difficult if you do not know what questions to ask.
No questions are silly questions and always ask for clarification if you do not understand something.
Please do let us know how you get on.
Take lots of special care of yourself
Hello again @Jonesi, I’m glad you’re asking such great questions. Sorry to read of your recent tiredness and dizziness, could they be from anaemia/low iron? Might be worth mentioning them to your specialist as these are common side effects of Polycythaemia vera (PV).
My haematologists have told me that enlarged spleens can occur when we live with Polycythaemia vera (PV) as they sometimes start to produce blood cells like our bone marrow tends to. Treatments should bring down our haematocrit levels and also help shrink our spleens too, but this can take time.
Like you I take aspirin (to thin my blood) as well as hydroxyurea (to disrupt my body’s overproduction of blood cells). Others with Polycythaemia vera (PV) for whom hydroxyurea doesn’t agree can take different cytoreductive medicines like ruxolitinib or interferon to reduce the blood cell proliferation. I also have occasional phlebotomy where, much like with blood donation, a pint of blood is removed, but only when a monthly blood test shows my haematocrit is above 45 %.
Make sure to mention your physical symptoms in your consultation. If fatigue symptoms make it hard for you to get through a day without needing a rest then do explain that—I’ve noticed some haematologists minimise just how disabling fatigue can be.
I know of other forum members who experience anaemia related to Polycythaemia vera (PV) who can ask for iron infusions, perhaps this could be something you can check?
Hope it goes well in your appointment @Jonesi, do let us know.
Hi @Jonesi,
Welcome to our forum,
Sorry to hear about your recent diagnosis of Polycythaemia vera (PV). You are bound to have lots of questions and it is good that you are exploring your treatment options.
The main aim of Polycythaemia vera (PV) treatment is to lower your risk of blood clots and manage your symptoms. Like @Duncan has previously suggested, it is therefore important to let your team know about the symptoms you are experiencing as this will play a part in your treatment plan. Treatment options may depend on your age, your haematocrit and also any other health conditions you have that can increase the risk of blood clots.
I am sure other members of our forum will post about their own treatment plans but I have also included our information here on treatment options for Polycythaemia vera (PV) which you may find useful PV treatment
Let us know how your appointment goes.
Take care
Fiona (support services nurse)
I had Polycythaemia vera (PV) which has developed into Myelofibrosis. One of the symptoms of my myelofibrosis was an enlarged spleen.
On diagnosis it was 24 cms compared to a normal size of 13 cms. I had an ultrasound last week and the measurement of 15 cms.
I am being treated with Fedratinib and Besremi.