Dr Silver updating re PV, risk criteria and best... - MPN Voice

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Dr Silver updating re PV, risk criteria and best treatment options

Paul123456
Paul123456

Quite long but if you have PV, well worth watching.

youtu.be/ZlqWabW4wTE

The slide at the end re INF reducing progression especially interesting, albeit based on one centre (Dr Silver’s!) results

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Excellent Paul, thank you for posting.

Paul, all of the 2019 conference videos can be accessed at mpninfo.org. I am always interested in what Dr. Silver has to say and I found Kilajian's presentation on interferon especially interesting too.

Paul123456
Paul123456 in reply to charl17

Thanks, this is direct link to all the Presentations

mpninfo.org/conferences/201...

Thank you always interesting to learn more about research outcomes.

Thank you Paul.

Thanks Paul, very interesting

Hi I’ve just watched the clip - should we all have a bone marrow biopsy? I was diagnosed with PV about 5 weeks ago, having weekly venesection and just started on hydroxy but no mention of biopsy.

Thanks Louise

I’d definitely ask my Hem about a BMB, especially if not an MPN specialist. Blood count can give a good steer but only a BMB can clarify exactly what is going on. And useful as a marker for the future ie can determine if any progression.

Weekly venesections are not a long term option. You will become too iron deficient. I would definitely ask your Hem about switching drugs if HU not working for you. As others have posted, HU resistant patients have successfully switched to Pegasys.

Has your spleen been measured?

Pegasys and Ruxo both good at reducing spleen. Latest trials are evaluating a combo.

How high are your WBC and RBC?

Best Paul

Hi Paul,

I’m feeling better now than I’ve felt for about 6 months so combo of HU and venesection is working for me. They are just doing it weekly until my bloods are back in normal range then it’ll be less frequent.

Not sure what current levels are as haven’t had any reports since first diagnosis when they were Hb 172, WBC 16.2, Pl 1348.

My spleen was enlarged, painful and with clots at beginning but ok now.

I’m back at haematologist in may so will ask about BMB.

Thanks Louise

Thank you Paul123456. That presentation was very interesting.

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