Hydroxyurea/medac

[krotsida]

I am new here, I have been diagnosed with positive with V617F JAK2 .

I take Hydroxyurea/medac 500 mg three times a week.

I there any one out there with the same condition?

I live in Greece.

[Applesnpears]

Do you have ET or PV?

[krotsida in reply to Applesnpears]

Thank so much for the reply.

I don't know.

End I don't know the differences!

Can you explain me?

Than you, have a beautiful day.

[mhos61]

Hi krotsida

Welcome to the forum.

I am ET Jak2+ (V617F). I also take hydroxyurea 500mg four times a week.

Do you know which MPN you have? I’m guessing ET.

[krotsida in reply to mhos61]

Hello mhos61

Thank you for answering my question, no I don't know , I haven't done the biopsy that is needed to determine that, I am 74 years old , and I am taking hydroxyurea for the last 2 years along with salospir 3 times a week . I leave in Greece, (sory for my not so good english)

In 2 months i will see my doctor, what shall i ask as far as what the future brings

with my condition or any other questions that I sould know the answer ?

Thank you , and have a good day.

[mhos61 in reply to krotsida]

Your English is excellent!

When you have a diagnosis your haematologist should discuss any concerns that you may have. In the mean time take a look on the link below.

You can always ask any further questions here.

mpnvoice.org.uk/

[krotsida in reply to mhos61]

Than you so very much for the link, it is very helpful.

I wish you a very nice week.

[bigberta17 in reply to krotsida]

Hi krotsida: I am 71 and recently diagnosed with ET/JAK2 only on aspirin

but when I hit 500 platelet number (currently 487) they want me to take

the chemo drug. Welcome to a wonderful support group and know you

can find a lot of good information on this site along with great support

from others. Best of luck in your journey. Judi

[krotsida in reply to bigberta17]

I dont know why they started me on hydroxyurea when I was on 450 count...

I am looking for a new haematologist doctor threw my pathologist.

Thank very much Judi for your reply.Anastasia.

I wish you al the pest too.

[hunter5582 in reply to krotsida]

Essential Thrombocythemia (ET) = too many platelets (aka thrombocytosis)

Polycythemia Vera (PV) = too many erythrocytes (red blood cells). Sometimes PV will also include thrombocytosis and/or leukocytosis (too many white blood cells).

A bone marrow biopsy is not required to tell the difference. That can be done with blood work only. Many docs prefer to get the marrow biopsy because it provides additional information, but it is not necessary for the diagnosis.

It is important to know. The treatment protocol for ET and PV is different. Hydroxyurea + aspirin (aka salospir) is the treatment protocol for ET - so likely you are dealing with that. However, you do want to be sure you know what your diagnosis is.

All the best to you.

[krotsida in reply to hunter5582]

That is what I have ,Essential Thrombocythemia (ET) = too many platelets (aka thrombocytosis) i'm diagnosed with 450 to begin with ,( after you explain me the differences) I can understand my mutation.

Any way i am searching for an new hematologist that He will take the time to

axplain it all.

Thank you for you help, and have a good day. Anastasia.

[hunter5582 in reply to krotsida]

JAK 2 v617f is the most common mutation in ET and PV. JAK2 = Janus Kinase 2. This is one of the body's kinase systems that drives many processes, hematopoiesis (making blood cells), and production of inflammatory cytokines are just wo of the things this system (JAK-STAT pathway) is responsible for.

It is a good idea to find out what your JAK 2 mutant allele burden is. This indicates how much of the gene package is mutated vs. being normal. Less then 50% is indicative of a more favorable prognosis broadly speaking.

I hope you find a good doc soon who can explain this all to you in detail.

[Mazcd Partner MPNVoice]

Hi Krotsida, welcome to our forum, glad that you have found us. Best wishes, Maz

[krotsida in reply to Mazcd]

Thank you Mazcd , I am so happy to find you all here ,I wish every one all the best.

[Applesnpears]

You should ask your doctor what type of MPN you have. This can usually be determined without a biopsy.

V617F is a mutation of the JAK2 gene but it can be associated with different types of MPN.

Having a basic understanding of your condition will help with things such as understanding symptoms that might arise, foodstuffs to be minimised, circumstances that might be problematic such as flying long distances.

There is a lot of information available on the MPNVoice website but you need to know which MPN you have before you can work out what is relevant to you.

Best wishes.

[krotsida in reply to Applesnpears]

That is exactly what I am going to do after i red all you helpful answers on this site .

Than you so very much all who took the time to help me.

Have a great week Applesnpears.

Anastasia.