Waiting call from haematologist

[Fuggers]

I joined this forum because I am waiting for a call from a haematologist with my gene mutation results. Was referred initially with elevated platelets on three occasions. Wanted to be prepared and in touch with others in the same situation in case I need support and advice.

[mhos61]

Hi and welcome to the forum. You may find some useful information in the link below.

I have ET with the Jak2 mutation, however, there are two other mutations related to ET, CalR and MPL. You can also have ET and have no mutations, this is termed ‘triple negative.’ This is just a brief overview.

mpnvoice.org.uk/

[Fuggers in reply to mhos61]

Thank you for that information. I cannot tell you how grateful I am to receive a reply from someone who has experience of living with this condition. Been waiting an age for telephone consultation with haematologist and mind has been running ahead of itself. Many thanks.

[mhos61 in reply to Fuggers]

You’re more than welcome. If you have any further questions feel free to ask.

It can be a lonely place when you’re first diagnosed, we understand, as we’ve all been there.

Hope your consultation goes well.

[hunter5582]

Welcome to the forum. This is a great place to get information and support form others with MPNs.

I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I have lived a rich life and at age 65 continue to do so. There have been some challenges, particularly in the last couple of years. Challenges can be managed. Treatment options have significantly improved sine I was diagnosed 30 years ago. A majority of people with ET/PV live normal to near-normal lifespans. You should look forward to a long life, perhaps with some challenges to overcome, but a good life.

You indicated that thrombocytosis is the condition that was detected. The hematologist will be looking at your mutation status, which will typically begin with JAK2, then look at CALR and MPL if you are JAK2 negative. I hope you get an answer to your MPN status soon.

Once you know what your status is, please do be sure to check back in. You will find a lot of people here who understand your situation and who will be there to support you.

[Fuggers in reply to hunter5582]

Many thanks. The support is most welcome.

[Wyebird]

Welcome to this amazing site. You are never alone. Ask as many trivialquestions as you like. They usually start debates and offer a wealth of solutions

[Fuggers in reply to Wyebird]

I'm sure I will be asking lots of trivial questions that have been asked many times before. Great to know that there is advice and know how at hand.

[Mazcd Partner MPNVoice]

Hello Fuggers and welcome to our forum. Really glad that you have found us, we all understand how you are feeling at the moment, it can be very daunting when you are waiting for results and being told about your diagnosis.

I can see that mhos61 has given you the link to our website, I hope that it helps you understand more about MPNs and answers many of your questions, but if not, just ask, we are here to help and support you.

With best wishes, Maz

[Fuggers in reply to Mazcd]

Thank you. I am very grateful.

[JaK2ET]

Welcome to the forum! I hope you get some clarification soon.

[Fuggers in reply to JaK2ET]

Thank you. Not knowing is the worst feeling. Clarification of a diagnosis would be a relief.