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 

Hi I was diagnosed 2 days ago. I am now on a tablet chemo hydroxycarbamide. It was originally found through a random blood test revealing high blood platelets.I was told it was a switch in the chromosome that doesn’t switch off when you have enough. I’m 70 and have been very active and travelled extensively .T he high level of platlets means my blood is thick and sticky and prone to clotting and I,m very lucky I haven’t had a blood clot before now.or a stroke. I now have to wait to see what the travel insurance say. Anyone else had any problems with travel insurance,or the chemo drug? 

Did you have a bone marrow test?

sabie

I have had ET for 10 years and been treated with hydroxycarbamide all that time. I told my travel insurance company and it made no difference to my policy. I have since regularly travelled all over the world!

This is me right now. I'm so confused as Dr said it wasn't cancer. That's why I'm now in here reading all these chats and freaking out :-(

I went through this around 18 or so years ago, but with Polycythemia, which is in the same group of disorders as ET.

I'll try to explain it from the little i remember of that time. These conditions are myeloproliferative neoplasms, which are a type of blood cancer. There was once upon a time they weren't classed as cancers, but they were re classed a good few years ago, maybe, a handful of decades ago.

I get cancer is a scary word, and nothing anyone can say will remove that far. However, not all cancers are equal.  These cancers are very slow growing, and with treatment, the vast majority with these conditions live a normal life as they would in the absence of the condition. Treatment ranges from monitoring, medication, to simply getting excess blood removed depending on your type.

Something that stuck in my head when going through testing for polycythemia was something the haemotologist sad, and it put everything in perspective. As much as you wouldn't choose to have it, how would you react if you were diagnosed with type 2 diabetes? Would you be freaking out or just get on with the treatment? I opted for the latter. Diabetes type 2 is so prevalent nowadays, a lot of folk think it's a nothing condition. The truth is, the haematologist said, if i was diagnosed with Polycythemia on that day, and someone in the next room was diagnosed with diabetes next door at the same time, the odds of me outliving that other person were a lot higher.

Hi Lennie1980,

Think your Doctor is simply not trying to freak you out but that is the point as there is nothing to be scared or overly concerned about as although the WHO have classified ET as a type of blood cancer it is not life shortening in itself and for majority of people very easy to manage and for some like myself there are zero side effects. No doubt there are lifestyle changes you'll need to make due to the medication your most likely to be on which thins blood and suppresses your immune system but they are not that onerous to be honest e.g. blood thinners means you'll need to more careful about cutting yourself and binge drinking is not on the menu if on an immune suppressant.

To give a reference point you're much more likely to die from simply getting out of bed in the morning or crossing the road - this statement comes from stats I learnt when I used to sell life insurance.

hope this helps you frame ET better. Reach out if you have questions as there are plenty people happy to help. Ta

Thank you for taking the time to respond to me. This helps enormously as they did mention those words (polycythemia) 

thanks

Karen

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.

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.

Ok thank you I will ask more questions