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...

interferon

feeds@yuku.com (jadey91) — Sat, 07 Nov 2009 19:05:21 GMT

hey how is every one?? x

just thought i would up date every body on how i have been getting on, in august through to september i
spent nearlly two weeks in hospital, i haded a suspected blood clot on my lung, i had loads of abdominal
pains and server pains in my back, they put me on sickness pill for the vomiting and codeien and paracetomal
for the pain, i had 3 scanes done to cheek my body to see if every thing was all ok with my overys and kidneys
aswell, i had...

Hello I have PV and operate the 28,50 member www.mpdsupport.org

feeds@yuku.com (lov2laf) — Sun, 01 Nov 2009 20:48:07 GMT

lowest counts ever

feeds@yuku.com (absolutroman) — Fri, 30 Oct 2009 02:42:49 GMT

Hey people!

I know i havent posted in a while but i keep visiting everyday to read about your developments. I am REALLY busy with college (one more year and its over) The good news is that i got my monthly test results and the platelets went down to 379,000 which is my lowest count since being diagnosed... pretty amazing!!! Remember i am on 2,5mg/day anagrelide

See u soon!

Nico

ps: i cut my hair... dunno if that brought the platelets down hehehe

What's up with this???

feeds@yuku.com (FINE MUSIC) — Mon, 26 Oct 2009 18:03:22 GMT

For years now I have been on 2-3 hydroxy pills each day. My platelet counts have fluctuated accordingly to the number of pills I have been taken. When my count goes too high the doctor increases the dosage, when they come down as a result of the pills she drops the dosage. I haven't had a platelet count less than 580 in over three years. For the last year or so I have been on two pill daily. Last month my counts went to up to 960 X10 but she told me to stay on two pills. Although...

ET or PV ---- Hi from a new member;)

feeds@yuku.com (bumblebee) — Sat, 24 Oct 2009 00:22:48 GMT

Hello everyone,

This is my first post, but I am not new to this site at all. Last August, my boyfriend was diagnosed as ET after a visit to the clinic for a very trivial reason. It was so trivial that I don't even remember. It is our university clinic, we were both doing our Ph.D (he graduated and I am still working on it). The school doctor scared the hell out of us by telling him that he might not make it to the end of the weekend, because his platelets is too high. (was...

H1N1

feeds@yuku.com (Mikulas) — Wed, 21 Oct 2009 23:05:36 GMT

Today I had my swine flu shots. It is pain for couple of hours and then diminishes. No big deal. What is surprising, that here in Canada, I had H1N1 shots so early as a preference. Probably because of my ET. I will let you know other side effects of the shots as they appear. Hopefully not.

Mikulas

A Good Result at Last

feeds@yuku.com (markejon) — Wed, 21 Oct 2009 18:36:44 GMT

Had my bloods done last week, and had an excellent result on the Platelets - A drop of 395, and the lowest for around ten years.
See charts at http://www.mej.talktalk.net/thrombo/index.htm and the member comparison at http://mejthrombocythaemiacommunity.yuku.com/topic/1207

Not doing any trials at the moment, but am...

Awaiting Platelets Count. The Poem.

feeds@yuku.com (gregjon) — Tue, 20 Oct 2009 13:36:12 GMT

As I was waiting to see the haemo last week I penned a little poem which must illuminate the experience we all have when we visit the docs .

AWAITING THE PLATELET COUNT.

Sitting in the Clinic
Waiting my Turn
Sent for Blood Test
Stomach Churns

Go to Hallway
Listen for Name
Follow Nurse
Weight Gain

Rest on Chair
Outside Room
Hope Counts Low
What News, BOOM !

wishing you well !

feeds@yuku.com (cassandra5) — Sun, 18 Oct 2009 10:32:52 GMT

Hello Mark ,it's a while since you posted,hope all is well with you .Cassy .

Please Any Infomation would help

feeds@yuku.com (Shirley) — Thu, 15 Oct 2009 14:41:28 GMT

Hi I did have an appointmenton the 29th October with the hemo and was going to start on Hu as he said on the last visit as i have syptoms and my count keeps going up and i am going on a long haul flight the begining of December it would help, but now the hospital have changed it until the 10th November, im just a bit concerned it will then only give me 2 weeks before i go to Florida in case i ahve side effects. Just wondered anyone who is on it do you get side effect quite quick if you are...

DR Visit Today

feeds@yuku.com (gramjan) — Wed, 14 Oct 2009 23:09:56 GMT

Hi everyone,
Had my quarterly hematologist visit today. Platelets at 360 and maintaining. All that was good but what kind of upset me today was the technician who drew blood asked me if I had a port and receiving IV chemo today. I told her I do not have cancer but instead a blood disorder. I am a glass "half-full" type of person and take the positive approach most of the time. But every once in a while a comment or misinterpretation like that throws me for a loop. This is...

Deleted from treatment. Postscript.

feeds@yuku.com (gregjon) — Tue, 13 Oct 2009 18:49:25 GMT

Well today was the day. I went to the clinic armed to the teeth with all my medications, my utility bills and passport as requested by the draconian decree which was my letter of reinstatement. I was in fact bristling for a confrontation but after getting my bloods done I sat waiting for the consultant only to be finally ushered in to see a male doctor who wasnt even a haemo doctor but just a foreign supply doctor over in the UK earning a huge wage for a few days work who frankly spoke poor...

Cancer Insurance Policies

feeds@yuku.com (Sapphire12112) — Sat, 10 Oct 2009 22:50:40 GMT

Does anyone have a Cancer Insurance Policy that covers MPDs? My husband and I have a cancer policy, but it mentions tumors and skin cancers and MPDs are not on the list of other illnesses it covers. I have not yet called my agent, but probably should have. I intend to soon...

Regards,
Sharon

Surgery went well!

feeds@yuku.com (loisb) — Sat, 10 Oct 2009 15:10:14 GMT

Hi, all. Thank you again for all the kind words/wishes for an easy, uneventful sugery. Everything went quite well and I am now home and zipping all around on my walker. The rehab exercises are challanging, but I will work hard as I am determined to be a poster child for knee replacement!

My blood behaved perfectly throughout the ordeal. I went off the baby aspirin a week prior to surgery. I had an epederal rather than general anesthesia. The day after surgery they...

Travel Insurance.

feeds@yuku.com (cassandra5) — Tue, 06 Oct 2009 19:37:51 GMT

Hi All, Do any of you have difficulties getting Travel Insurance when going abroad ,because of our Medical problems ? Cassy5 .

are you happy with your treatment?

feeds@yuku.com (Minty Mary) — Tue, 06 Oct 2009 19:22:58 GMT

Hi Folks,

Just wondering if you are happy with the treatment you get. I was diagnosed three years ago and have been on hydroxyurea and aspirin every since. Initially I attended the hospital weekly for blood tests when first starting hydroxy and then every two weeks, monthly and then every two months. Now I visit every three months and have my blood taken but I do not see the doctor as they now do a telephone consultation when you are home. this does save a lot of hanging around at...

Surgery is Monday

feeds@yuku.com (loisb) — Sat, 03 Oct 2009 18:23:29 GMT

Monday morning I'll have the knee replacement surgery. My platelets this week were 415, up from 376. The Hem, GP, Surgeon, and Anesthesiologist all say..."no problem". Nice words to hear but I can't help but be anxious. The blood situation just adds to the overall apprehension. Send good thoughts my way on Monday and I'll be in touch once released from "Joint Camp" on Friday!
Lois

Is this the cavalry coming over the hill?

feeds@yuku.com (Peter N) — Fri, 02 Oct 2009 18:13:23 GMT

Probably not, but good to see three new medications coming to trial for MPDs. Have a look at:

http://www.mpd-support.co...les/MPDLife_July2009.pdf

I don't see why they aren't trying out a JAK 2 inhibitor for ET, so I have written to Claire Harrison, the author asking if this is likely- I'll post a reply if and when I get one!

Best wishes all,
PETER

2009 Thrombocythemia Discussion