Hi mycancerconcern1, 

I know you were hoping to connect with others with this diagnosis so I just wanted to stop by and put you in touch with [@eashmore]‍, [@jacquied]‍ and [@JanetRH]‍. They all have essential thrombocythaemia and now that I've mentioned them in this post I'm sure they'll pop by when they can to say hello and share their experiences with you.

I can see you've been doing some research in to this so I thought I'd share the information we have about it on our website for you to have a look at as well. If you have any questions do feel free to give our cancer nurses a call. Their lines are open Monday - Friday between 9a.m - 5p.m on 0808 800 4040.

Kind regards, 

Steph, Cancer Chat Moderator

Hi, I received my diagnosis of ET with the jak2 mutation only 3 days ago! The consultant never even mentioned the 'C' word. He was very vague in his explanations of this condition....It's fair to say that after doing a little research, I was kind of freaked out a little! I'm not due back at the hospital for another 3 wks. I don't know where to go or who to ask about my diagnosis and how this is going to affect me. 

All your stories and journeys will be a massive help. Thank you 

lennie1980 

Many thanks this is very helpful 

As Rocco said, feel free to post as and when you need to talk. No matter how people dress it up, the initial diagnosis is scary. After all, the term "cancer" is universally scary. We all associate that word with the worst possible outcome. But seriously, once you get your head around it, and begin to put things in perspective, 20 years from now, you'll probably not even blink an eyelid at it. It will just be something that is in the background. All things being normal in your life, and barring other unrelated things, you'll still be here until a ripe old age. Just keep on top of it with meds, lifestyle changes or whatever and you'll be fine.

Thank you. I feel after these responses I will sleep better tonight. I've put a few questions together for my dr too and I'll email those over.

what is the benefit to having the bone marrow test done?

thanks

karen 

The bone marrow test simply allows them to gets actual cells to confirm the diagnosis or to even rule it out. Bloods can show one thing, but if the bone marrow is fine, then it could be something else causing it. It's why these conditions are broken down into primary and secondary categories. Primary means it's directly caused by your marrow, and secondary, which is more common btw, is being caused by something else. Such as medications, other non cancerous conditions and so on and on.

The last thing they want to do, and you want is to be treated for something you don't have. If it's secondary, then they will have to investigate the underlying cause. It can be as easy as changing meds, to more complex stuff such as maybe a certain type of chronic infection etc. I dunno, the ins and out as I'm not an expert, but you really want that marrow test.

The marrow test is done in the hip region. I was uncomfortable for a few days. But nothing paracetamol didn't take the edge off.

Thank you ProfBaw this is so helpful and I really appreciate you taking the time to reply

www.cancerresearchuk.org/.../treatment
 

See info in above URL - Bone Marrow is not always needed, I didn't have one. Speak to your Heam' doctor and they will inform you what if any other test is required. Cheers.

Hallo Rocco,

Good to see your post and find that things are going well with you.  I wonder if Chorister and Sabie will have noticed it too?  I'm still OK and enjoying the spring.

Love and best wishes to all.

Many thanks for this.

Im tired all the time at the moment- is this a symptom of ET or maybe it's just related to something else. 

Ok thank you I will ask more questions

Hi i have been reading some of the posts ,my 7yrold Grandson has been diagnosed with ET, we don't know a lot about it yet, though they have said its very rare in a child. He will go on iron tablets to start with and have checks every 3 months and if not got his platelets down he may have to start a chemo tablet? We all just trying to process this at the minute and research what it could mean.

Hi i have been reading some of the posts ,my 7yrold Grandson has been diagnosed with ET, we don't know a lot about it yet, though they have said its very rare in a child. He will go on iron tablets to start with and have checks every 3 months and if not got his platelets down he may have to start a chemo tablet? We all just trying to process this at the minute and research what it could mean.