Trying to post

[SuET2017]

But it keeps telling me it is inappropriate - it isn't? What can I do? Thanks Sue

[Paul42]

Hi Sue

I'd drop Maz a message with what you are trying to post, could be something wrong with the site, or maybe it thinks one of the words you are using is inappropriate when it isnt. I wont go into specifics but a certain town in england used to always get blocked by our works internal email for that reason.

Paul

[SuET2017 in reply to Paul42]

Thanks Paul. I was just writing about being newly diagnosed, and treatment and feeling overwhelmed and so on..... I was 'moaning' a it, perhaps it didn't like that

I have emailed the HealthUnlocked Help Contact, but will try and connect with Maz (the site administrator?)

Sue

[Paul42 in reply to SuET2017]

Hi Sue

Yes Maz is our 'leader' and welcome to the site.

Moaning is fine, we all need a moan from time to time, i dont think it will be blocked for that.

Just an idea, but you can edit posts, so maybe you can post it one paragraph at a time, then go in and edit it and post the next paragraph, that might help you know which part is causing the issue.

Paul

[Mazcd Partner MPNVoice in reply to SuET2017]

Hi Sue, sorry you have been having problems with writing a post, hopefully the HealthUnlocked team have been able to advise you, if not, can you email me at [e-mail] with the text you were trying to post and I will get it sorted out for you. Best wishes, Maz

[Kerri2]

Sue, I think it's your accent. My friend from England can't use Siri , Siri thinks everything she says is related to sex.

Sorry your feeling overwhelmed,know we're sending you good vibes. Hope they can get everything sorted out for you. You'll feel better getting it off your chest.

[SuET2017 in reply to Kerri2]

Haha, and even worse I have a Northern English accent - siri has no chance of understanding me.

I have given up trying to post the first message that was "inappropriate" even though HealthUnlocked said it was fine, they also said they could not do anything about it. However, I got a supportive reply from Maz - so all good.

Thanks for the vibes. And yes, I know it is good to share, though that in itself is tough for a British mind-set

Basically I am ET, JAK2 negative, my platelets were 1000+, I have been on Anagrelide and Asprin for four weeks now (with nausea on and off all day and dizziness and palpitations for about 2 hours after taking medication). My GP is clueless and I'm not sure about my haematologist yet. He is very nice, but the more I read about this condition, the more I realised how uninformed I am from him.

How do I feel about all this mmmm A little bit annoyed - I have lived a healthy life style for the most part all my life, and have always been full of energy. A little bit confused - conflicting information and advice and interference from, and between, GP and Haematologist. And a little bit fearful - prospect of long term medication that makes me feel unwell; I don't want to be tired all my life; the statistic that says that ETs have a life expectancy of 10-15 years after diagnosis, thats too soon for me; and I certainly don't want blood clots!

Anyway..... blah blah blah..... I am maintaining a healthy diet, trying to drink lots of water as this really does seem to make a difference (yesterday I didn't drink much at all and by the evening I felt awful), and I am going to try and start a regular exercise program (Ive always been fairly fit, but don't really do exercise as such).

OK now that I have shared a summary of my life to date - not very British - I will see if I can post this.

Sue

[Paul42 in reply to SuET2017]

Hi

Dont worry to much about the statistics, that what they are, facts and figures from years worth of data, considering most people are into their 60's when they are diagnosed, then 10-15 years is probably (or at least was) a fair life expectancy for most people.

Paul

[beetle in reply to Paul42]

I agree with Paul. They are old statistics. I was diagnosed age 44 and I'm 67 in two weeks and although taking life somewhat slower I am still here!

[Hidden in reply to SuET2017]

Hi Sue hey be careful you don't drink too much water. I was drinking about 4 Lts a day! I started becoming very lightheaded and dizzy. I read in my local paper that you can over highdrate! I straight away cut down the amount and what do you know? No more dizziness. Also I am a bit concerned about your comment about our life expectancy! 10 to 15 years??are you sure about that? I hope I won't die in my 70s!! Too much living to do! 😎 Lyn

[SuET2017 in reply to Hidden]

Hi Lyn, I'm not over drinking water - don't like it much, but it does help the effects of the Anagrelide pass quicker.

As Paul and beetle said, it is just statistics based on life expectancy from diagnosis, which I have now read, is often in later life.

Yep.... lots of living to do (once I have the energy )

[Litefootes in reply to SuET2017]

The energy level is a frustration, I agree. Like being in water up to your waist and trying to run. Finding a group like this helps so much. I wish I'd run across this forum when I was diagnosed 12 years ago, because I was overwhelmed! What! All these expensive tests and blood letting, and hey I've also now got diabetes, high BP, high cholesterol etc..... so, learn what you can about it, talk to as many ppl as you can. I go to a blood cancer support group when I can and boy does that help!!!

Good luck, and keep moving forward.

Carol

[Jennifer1974]

Hi Sue ,

I'm newly diagnosed as well. Jak2+ My platelets are around 625 last time they checked. I'm scared out of my mind and have probably "overshared" but I'm American 😉 . There's a FB ET group too but I prefer this forum. Everyone here has been very supportive.

[SuET2017 in reply to Jennifer1974]

Hi Jennifer, I believe sharing is a good thing and all my American friends encourage it.

I guess all we can do is go with the flow, find a good Haematologist, and keep informed, oh and sleep when able.

[Jennifer1974 in reply to SuET2017]

I really haven't told many people outside of this forum. My husband, brother, and a couple close friends. I haven't even told my parents..I hate to worry them! May I ask your age? I'm 41.

[mol56]

I also have E.T. Jak negative but Cal R positive. I was diagnosed 11 years ago and have been on Hydroxycarbamide for over 10 years and Aspirin for 11 years. At the time of diagnosis, I mentioned the life expectancy of 10-15 years to my consultant and she said not to take too much notice of those stats as this was just facts and figures from data collected.

At the time of my diagnosis, the Jak positive gene mutation was not widely known and I was only tested for this a few years ago.

I did provide an awful lot of blood samples to be sent for the research into E.T.

The Cal recepter mutation of this gene is fairly new too and I am positive for that. I understand that it is unusual (but not impossible) for someone to be both JAK negative and Calr negative.

SO much more positive information has become available since my diagnosis and I am much more knowledgeable about my blood condition - helps having a good Consultant and back-up from the Haem nurse department plus the wonderful information from MPN VOICE.

I am nearly 66 and intend to live for many years yet - too many books to read, places to visit, plants to put in the garden and especially intend to see my lovely 4 grandchildren become adults - especially want to see my grand daughter's first unsuitable boy friend (sweet revenge for several years worry from my own daughter!)

Hope you fell well - I do have off days occassionally but then so do we all but I have learnt to live with the fatigue and going for a walk really helps.

Judith

[SuET2017 in reply to mol56]

Hi Judith, I am Jak2 and Cal negative.... they are yet to discover my mutant gene? It seems like a lot more research is required in order to then develop specific treatments, as in the JAK2.

How do you find the Hydroxycarbamide? Do you take it all the time, or do you come off it when your platelet levels drop? I'm not sure how it all works (though I don't take Hydroxycarbamide, but Anagrelide).

Take care and thanks, I am finding it really helpful to hear peoples stories - less lonely in it.

Sue

[mol56]

My dosage is altered as to my blood levels - at the moment I am on 500mg (1 tablet) Mon- Sat and 1g (2 tablets) on Sun. My haemaglobin was a little low so the hydroxycarbamide was reduced a little.

Actually the days of the week do not matter, just a routine I have. If my platelets go up my meds are tweaked to maybe 2 tablets Sat and Sun and just 1 tablet a day for the rest of the week. I have never stopped taking them altogether - think the least I took was 1 tablet every other day and the most 2 tablets 7 days a week.

I seem to tolerate hydroxycarbamide very well at the moment. I am checked about every 2-3 months, talk to a haem nurse over the phone (always the same one if possible) and see my consultant once a year. This is my choice, I could go to the out patients dept for every appointment and see a consultant but am happy to use the telephone appointment system for the time being.

I have had treatment for a superficial basal cell carcinoma on the bridge of my nose recently as I am aware of the slightly raised risk for skin cancers but I probably would have had this anyway due to working out in the sunshine for many years as a playground assistant at a primary school.

Hope all makes sense

Judith