Help please again sorry

[Cat1001954]

Iv read on a letter that was sent to me instead of my go that I have triple negative essential thromboycemia can’t spell it. Anyone know what the difference is from ET? I’m only diagnosed in august so I’m so new to all these words and consultants always in a rush when you try to ask questions thank you all and good morning

[GK40]

means you have no genetic mutation

[Cat1001954 in reply to GK40]

oh thank you is that a good thing? Iv only been diagnosed 7wedks ago so it’s all new

[DottyDaisy]

HI Cat, I'll do my best here.

Firstly you should definitely make sure you receive copies of anything anybody writes to anyone about you. It is an essential element to you learning how to "be your own advocate". Something we talk about a lot here. It is always important but particularly so when we have such a rare condition that few GPs and, sadly not even enough haematologists know much about.

With regard to your diagnosis, Essential Thrombocythaemia is just the full name for ET. As for the triple negative, this is hard to explain. This because they have not yet identified all the possible reasons why your platelets are so high. I assume this is the case or you wouldn't have this diagnosis. If you are triple negative then you don't have any of the three mutations most likely to be the culprit.

You will be pleased to hear that there is masses of research going on to identify more of these causes. And indeed treatments, some of which may turn out to do even more than just bring your platelets down.

If you are interested, there is loads of information you can read about it and some very knowledgeable people in this group who can point you in the right direction.

I hope this isn't TMI for a first response. I look forward to hearing how you get on along your ET journey and any more questions you may have. Warm regards Daisy

[Cat1001954 in reply to DottyDaisy]

thank you so much daisy great help I will keep in touch x

[DottyDaisy in reply to Cat1001954]

That's what we're all here for

[Cat1001954]

bless you all

[hunter5582]

DottieDaisy is 100% correct about ensuring you get copies of everything in your medical record. It is the only way that you will have the information you need to understand your condition and how best to manage it.

Essential Thrombocythemia (American spelling with no extra a's) is usually caused by one of three driver mutations, JAK2, CALR, and MPL. More rarely, ET is found to be "triple negative" - which means none of the three driver mutations were detected. The connection between the genetic makeup and how it manifests and how people respond to treatment is under investigation. It does matter which driver mutation you have or being triple negative but truly understanding it is a work in progress.

Here are couple examples of the research into triple negative MPNs

ncbi.nlm.nih.gov/pmc/articl...

researchgate.net/publicatio...

Here is a good presentation on Triple negative MPNs

youtube.com/watch?v=Oc8ujrS...(Not working as expected?)

This is a very good presentation about the molecular biology of MPNs. It will help to build a base of knowledge needed to understand MPNs.

youtube.com/watch?v=zHwTIJb...(Not working as expected?)

I would definitely take your questions back to your care team. I find it helpful to write down my questions on a formal agenda and give the doctor a copy. This helps to get your questions answered. It also helps to build a base of knowledge so you can speak the same language to doctor is speaking. This facilitates effective and efficient communication.

All the best my friend.

[Cat1001954 in reply to hunter5582]

thank you so much very helpful and I really appreciate this all

[DougyW in reply to hunter5582]

hI. If you are in the UK a tip is to email your clinical support nurse in advance with these questions. I have done that and been responded to with thought out answers which are then included in my follow up letter.

[Cat1001954 in reply to DougyW]

hi thank you so much have a good day

[HazeBlue]

I always get copies of letters that go to the GP prefer it that way. I have ET and last bloods showed PV had to have venesection . Diagnosed back in 2012 good luck with the ET journey

[Cat1001954 in reply to HazeBlue]

thank you so much

[Ovingite]

hi Cat,

i suggest you look up MPN Voice on Google. It's a fantastic source of information for people like us, and there is plenty of sound advice about ET written by people who are specialists

Good

[Cat1001954 in reply to Ovingite]

thank you I will

[DougyW in reply to Cat1001954]

Forgot to add. There is a blood cancer uk forum that is very good and free + if you get the NHS App and connect your records (actually easy) you can see all of your test results I clouding FBC and Bone Marrow.

[Cat1001954 in reply to DougyW]

great x

[Ovingite]

sorry cat. My phone is playing up. Meant to say good luck!

[Cat1001954 in reply to Ovingite]

no worries thank you so much

[SuET2017]

hi. I’m also ET triple negative. I’m treated much the same way as any other person with ET in that my platelets are kept, in my case with pegalated interferon, within an acceptable range.

As far as I understand, the gene that causes my ET has just not been identified as yet. Though I’m no expert.

Take care

[Cat1001954 in reply to SuET2017]

oh thank you so much

[JOY2THEWORLD49]

HiYou should demand and request all correspondence!

With it should come an explanation from your GP if your Specialist wont explain.

It is your right. Then I look up different words before having it out with my GP.

ManageMyHealth we have in nZ and I sure have when I'm not being cared for with options and treatments to get me on the road to recovery or control.

cheri JOY. 73. (NZ)

[Cat1001954 in reply to JOY2THEWORLD49]

thank you