Jak2 Neg, ? Familial PV

[Vicky_b]

Thankyou all for your messages of support.

I saw the consultant today & My Jak2 test is negative so the dr says its not PV. My sons and my blood tests are not right & my daughters are borderline so we're seeing Prof Harrison in August as it he thinks it may be familial Polycythemia.

Does anyone know anything about this & how its different?

More waiting!

x

[mhos61]

Hi Vicky,

I’m sorry I can’t answer your question. It seems as though you still remain in ‘limbo’ until August. Poor you! At least if you’re seeing Professor Harrison, you’ll be in good hands, so some consolation there.

Was it a request by your haematologist that your son and daughter have their bloods tested?

Hope someone can offer some thoughts.

Mary x

[Vicky_b in reply to mhos61]

Hi Mary, no just coincidence my daughter had kidney stones in october & they noted her blood levels needed monitoring, then my son spent 2 weeks in hospital in january & they noticed his levels were not right then My spleen became enlarged about 2 weeks later & they found my blood levels & referred me to the haem team! x

[Hughes-Comrade]

Just because the jak2 was negative doesn’t mean you don’t have it. My wife’s was negative too, but have familial pv in our family; son and daughter as well. My wife has a different mutation. I’ll try and look it up and get back to you. I think you might find it searching here.

[Vicky_b in reply to Hughes-Comrade]

Thankyou.

I said that I've seen people who have it and are jak2 neg. The dr said they now don't think that its polycythemia if its jak2 negative and they are looking to call it something else. He also said that if its familial there is no risk of it changing to ET leukaemia etc

Do your wife and children have any treatments?

Vicky

[Hughes-Comrade in reply to Vicky_b]

Blood letting has been the treatment since about 2009/2010. It is important to keep up on treatments and not let your HCT get too high.

[Vicky_b in reply to Hughes-Comrade]

How old are your children? Do they have blood letting too?

[Hughes-Comrade]

My wife’s hems-onc ran an EDTA WB and also HIF2A. The HIF2A was positive.

[Vicky_b]

Thankyou. I haven't heard of those. Who are they under?

[Hughes-Comrade in reply to Vicky_b]

Not sure what you mean. Your doc should know. Might be expensive tests.

[mammared]

Hi, have you considered that this may be Hemachromatosis? Ask if your blood has been tested for this as well as JAK 2. Also your family members.

[Vicky_b]

Thankyou. I will look into that as I haven't heard of it x

[Vicky_b]

Our appointment at guys has been brought forward to monday. Hopefully we will have some answers soon😊 x