2009 Thrombocythemia Discussion

UK Free Prescriptions

feeds@yuku.com (JennyECharles) — Fri, 18 Dec 2009 11:53:52 GMT

For those that aren't getting free prescriptions,there was an article in the December MPD support newsletter regarding the reclassification of MPDS to myeloproliferative neoplasms. At the end of the article (by Dr Claire Harrison) it says:

'Good news for patients in the UK; you can now obtain your MPN treatments at no charge - ask your haemotologist for details'.

As we have to go to the GP today I am going to take the article and see what they say and will let...

Buddy Programme

feeds@yuku.com (JennyECharles) — Wed, 16 Dec 2009 23:05:21 GMT

MPD support have just launched a buddy programme where 'old timers' buddy up with a newly diagnosed patient, either by email or telephone, and offer practical and emotional support. I thought this was a great idea.

You can read about it in the December newsletter http://www.mpd-support.com/files/mpdLife_Dec09_final.pdf

platelets update

feeds@yuku.com (absolutroman) — Mon, 14 Dec 2009 23:25:17 GMT

Hey folks! How are the best forum members preparing for the holidays? I am planning my big escape to nowhere land so i cannot be found by my family... I truly hate this season...

In other news my platelets are in 440,000 so thats good but the bad thing is that my haemo is leaving his practice now... (the same thing happened to me last year with my first haemo) so... i am alone again... i feel rejected lol.... i will have a new haemo appointment soon so maybe i will find one that...

To USA Members: H1N1 Question

feeds@yuku.com (gramjan) — Thu, 10 Dec 2009 01:01:18 GMT

Hey everyone,
I am wondering how many forum members in USA have gotten or even found available the H1N1 vaccine. I'm in MO and in our fair city there is none to be found. What little vaccine there is has been given to high risk people. I thought I would be in that group with ET as a chronic disease but not so according to doctor's office. So just wondering about the rest of you in this country. Seems like the process is moving very slow. Good day to everybody.

...

Good News

feeds@yuku.com (Shirley) — Wed, 02 Dec 2009 09:12:16 GMT

Saw my Hemo yesterday and on the HU my platlets have come down from 957,000 to 550,000 my white cells are down a bit but he is not worried he wanted me to go on 3 a day but because im tired on 2 is leaving me on 2 at the moment. He said I can fly so really looking forward to going to Florida tomorrow nead to pack now as was a bit worrid I might not go so didnt do it. Hope everyone is keeping well

Shirley

Christmas Cards

feeds@yuku.com (JennyECharles) — Sat, 28 Nov 2009 20:07:41 GMT

Thought I would share with you something myself and friends have been doing for a couple of years now, other than family or relatives far away we don't send christmas cards but make a donation to a charity. For the last couple of years it has been the Royal Marsden in London as my friends daughter was treated there for cancer when she was 16.

What with the constant threats of postal strikes in the UK, and the commercialism of Christmas, it seems much more appropriate and in the...

I'm back!!

feeds@yuku.com (susanl) — Sun, 22 Nov 2009 21:30:03 GMT

At long last..............having had severe computer/router problems I can finally access the site again.

Hope everyone here is OK.

Inspirational Poem

feeds@yuku.com (andy) — Sat, 21 Nov 2009 09:46:56 GMT

I know this is a bit off-topic but I recently came across this short poem by a late 19th-century English poet, William Ernest Henley, which he wrote at the age of 26 after spending 3 years in hospital, having one of his legs amputated and fighting with the doctors to stop them taking his other leg off too.

I have vowed to read it whenever the going gets tough..!

Andy

OUT of the night that covers me,
Black as the Pit from pole to pole,
I thank...

Message for lov2laf (Corrected)

feeds@yuku.com (Sapphire12112) — Fri, 20 Nov 2009 04:04:56 GMT

lov2laf - I sent you a message regarding PV directly to your inbox ...
Sharon
Corrected 10/23/09

1,000 or 1,500..?

feeds@yuku.com (andy) — Thu, 19 Nov 2009 00:17:53 GMT
I saw my new consultant today, having moved to the north of England - big busy clinic but as he is an MPD specialist over half the clinic were ET patients and the doctors really seem to know their stuff, so it seems like a good place to be...
My previous consultant (who was also very good but less of an MPD specialist) was still working on 1,000 as the treatment threshold but today I have been told it is definitely OK to wait until 1,500 so long as there are no other risk factors such as...

Help Please

feeds@yuku.com (Shirley) — Wed, 18 Nov 2009 07:29:08 GMT
Hi I know this might sound daft but tonight I have to take 2 HU instead of the 1 which i have been taking.
Can I take both together at night.

Thanks Shirley

Just wanted to say hello!

feeds@yuku.com (sammypink) — Mon, 16 Nov 2009 10:20:24 GMT
Hello everyone ,

I have not posted in a couple of months, as my health has not been doing to good!and for a change it has not been the ET!!!. I have been having blackout spells for a few months,and dizzy spells and i thought it was something to do with ET but my doctor said i needed to see a Neurosurgeon. i had seen one two years ago as i had had problems with my back! and two years ago they gave me a MRI, they said that it was fine! but when i went back a few weeks ago they told me...

Hu

feeds@yuku.com (Shirley) — Sun, 15 Nov 2009 09:50:12 GMT
Well I have taken 4 tablets so far and the only side effect at the moment is that im very tired but I dont mind this and hope this is the only one. Have a bit of a dry throat but not sure is this is anything to do with it as i have just got over a nasty cough. Will see what happens next week when I start taking 2.

Nuetrophil

feeds@yuku.com (Shirley) — Fri, 13 Nov 2009 12:49:42 GMT
Hi again just had a letter that was sent to my GP from Hemo and it said he was putting me on the HU and that my platlets had gone up to 957 and that my Nuetrophil had gone up to 12 anyone know what this means. Thanks

Interferon Recall?

feeds@yuku.com (Alex) — Fri, 13 Nov 2009 06:36:57 GMT
I got a call from my doctor yesterday informing me that the Intron A multidose pen has been recalled by the company and that I should stop using it immediately, but the impact on patient health is unknown. I haven't found too much information on it online besides at this utah university pharmacy website - http://healthcare.utah.edu/pharmacy/alerts/426.htm Anyone else taking Intron A receive a call from their...

MPD Symposium 2009 Webcast

feeds@yuku.com (JulieG) — Wed, 11 Nov 2009 03:41:53 GMT
For those of us who were unable to attend the 2009 MPD Symposium that was held in New York last week, they have made the webcast available on the MPD Foundation website:
Symposium Webcast
This symposium was staffed by top doctors from around the world in the field of MPDs. They each gave presentations and answered questions on the different MPDs, treatments, drug...

Hemo Visit Today

feeds@yuku.com (Shirley) — Tue, 10 Nov 2009 20:08:16 GMT
Hi everyone.
Had a Hemo appointment today and my platlets were the highest they have been today 957,000. He said as I am Jak 2 positive it was time to go on Hu, Good job my husband came today as he started asking questions and said is this a short course which i thought it was going to be for my long haul flight begining of december, he said oh no this is forever, this was a bit of a shock but i didnt say anything. He said 1 tablet a day for 1 week then 2 a day for the next 2 weeks and...

Swine Flu Letter

feeds@yuku.com (Minty Mary) — Tue, 10 Nov 2009 10:44:02 GMT
Morning folks,

I live in the UK and was wondering if any other members have been automatically sent the swine flu letter from their GP inviting them to have the jab? I have never been invited to have the ordinary flu jab but have rang up when they had injected all the "priority" patients and if they have some left over I could have one, but seeing as I take hydroxy, I thought I would fall into the priority category. I feel sometimes that we are pretty ignored and I even...

Mark's email address

feeds@yuku.com (elcoo) — Sun, 08 Nov 2009 14:24:45 GMT
Does anyone have an email address for Mark? Or Mark, perhaps you could email me then I'd have it - just wanted to contact you about something... Thanks, Eleni. (eleni.c@virgin.net)

Platelet Count

feeds@yuku.com (Tollpatsch) — Sat, 07 Nov 2009 22:12:52 GMT
At my last visit, the hem would not tell me my platelet count. I had asked politely. No, I do not need to know these numbers. They do not mean much anyway, since they are fluctuating all the time.
Whose numbers are they? His, mine, the hospital's or who??? I need some advice here.
I have been a member here for some time, read most contributions, but write seldom. I am 82 years old, live in the Niagara area of Canada, had ET for a couple of years and take 500 mg hydroxyurea for...