Polycythemia Vera diagnoses with their SLL/CLL?

[Bishopr]

Has anyone else received the Polycythemia Vera diagnoses with their SLL/CLL? I just received the secondary diagnosis and I am on Imbruvica but wondering how they will treat the combination now.

[Jm954 Administrator]

Hi there,sorry to hear of your additional diagnosis.

Polycythaemia Vera is most commonly treated by venesection to bring your Hb and PCV down to a level that is not harmful. If your platelet count is also high then venesection is less likely to be used and then oral drugs such as hydroxyurea are available. Platelet production can be stimulated by venesection. Sometimes aspirin is given to make the platelets less sticky and so prevent clots.

I would think that your two diagnoses will be treated separately but with consideration for each other. I don't think you would need to stop your Ibrutinib other than for the usual reasons.

Leukaemia care have a good booklet which you can find here:

media.leukaemiacare.org.uk/...

Jackie

[Bishopr in reply to Jm954]

Thank you. This is helpful

[ironjohn]

They thought I had PV as well so a Jak2 test that ruled it out. In any event the Dr took a pint of blood from me and things went back to normal.

It’s my understanding that how the control Pv is taking a pint of blood every so often to keep the blood flowing easily.

Best wishes John

[nanmc]

I had diagnosis of PV at the same time as Cll in 2017. Treatment has been for the PV with Cll on watch and wait.

[Mal42]

Hi Bishopr, Im sorry to hear of your new diagnosis. I have PV, diagnosed 6 years ago, on hydroxea. I was diagnosed with CLL last year having been poorly for a year. It's a bit much isn't it to have 2 blood cancers. Because pv was progressing to mf I have been prescribed ruxolitinib, I still take hydroxea, this coincidentally joy oh joy relieved the cll symptoms and I feel more stable energy wise than I have for years. My bloods, that had gone bonkers, are also becoming more stable. Platelets are still high,

There is life after a new diagnosis. PV can be managed with venesection or meds. I have had an mpn specialist from the start. The lymphoma is low level so she and my local consultant deal with both. I do find the cll a minefield though and very hard to understand.

Look after yourself

Mal