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yogiB on 22 March 2010

Category: Uncategorised

Replies: 3

Last updated: 22 March 2010

New Government guidance on supply of medicines!
by karen (Mar 22)

Until recently I was only able to get 1 months supply of Dasatinib due to only having monthly appointments. I have just been changed to an appointment every 2 months and I now get my drugs delivered

by Janet (Mar 22)

I have also had 3 month's supply this time, but only after Novartis had been sent a copy of my prescription to show that I am a bone-fide patient. My local chemist tried the wholesaler first, and

by ali (Mar 22)

My husband put his 3 month prescription in at the local chemist and expeted the usual 1 months supply but got the full 3 months. Seems that Novartis are allowing the full prescription again.

by yogiB (Mar 22)

I have been corresponding with my local MP of Spelthorne re the problem I have been having in sourcing Imatinib, due to it being sold on to other countries and creating a local shortage.
He has been
Category: Uncategorised

Replies: 3

Last updated: 22 March 2010
Alyson on 21 March 2010

Category: Uncategorised

Replies: 5

Last updated: 23 March 2010

Disappointing results
by sandy craine (Mar 23)

Hi Alyson,

I am glad to hear you have a good sibling match. My younger brother was a good match for me and my transplant went well. Please read my diary for details of the non-myeloblative sct

by Alyson (Mar 22)

Thank you all for the helpful information.

I have been treated at Chesterfield Royal Hospital since being diagnosed at the end of January 2009. I have also been referred to the Hallamshire in

by hcy0da (Mar 22)

Hi Alyson
I'm sporry to hear you are having problems with low counts. I had exactly the same problem and like Sandy said G-CSF would have been an option if it were only the white counts and neuts.

by sandy craine (Mar 22)

Dear Alyson,
I am sorry to hear this. Given your results are from a bmb (bone marrow biobsy) I would not say that it is likely to be wrong or as in the case of peripheral blood pcr's- sometime
Category: Uncategorised

Replies: 5

Last updated: 23 March 2010
Johannah on 20 March 2010

Category: Uncategorised

Replies: 1

Last updated: 22 March 2010

Tonsilitis
by sandy craine (Mar 22)

Dear Johannah,
Yes infections can take longer to clear up given that white cells (neutrophils) that usually deal with the sort of infection you are suffering from might not yet be at their best or

by Johannah (Mar 20)

Hi, all

I have now been on Glivec for 6 months and am doing really well. I recently had tonsilitis and still have many of the symptoms after almost 5 weeks, severe sore throat, white spots in
Category: Uncategorised

Replies: 1

Last updated: 22 March 2010
zaviemiller on 19 March 2010

Category: Uncategorised

Replies: 1

Last updated: 20 March 2010

CML Combo/Trials...The cure we have been waiting for?
by Dennis (Mar 20)

this sounds very exciting. Does anyone know if these trials will be brought over to the UK?

by zaviemiller (Mar 19)

Jerry Mayfield Posted this on his CMLNEWDRUG.COM website.
CML Combo/Trials...The cure we have been waiting for?

by Jerry Mayfield
Yesterday (March 17, 2010), I met with Dr. Talpaz about his
Category: Uncategorised

Replies: 1

Last updated: 20 March 2010
Steven D on 18 March 2010

Category: Uncategorised

Replies: 2

Last updated: 19 March 2010

I'm new on Nilotinib. Some advice needed please.
by Steven D (Mar 19)

Thanks Pennie. I am starting next thursday but for some rease the very first dose is to be taken after a light breakfast. presumeably to be absorbed quicker.
Will keep you informed.
Steven

by Pennie (Mar 18)

Hi Steven
I take my morning dose at approx 7am - that way I have done the starving whilst asleep! By the time I have showered, dressed, planned the day I can eat breakfast. You shouldn't have

by Steven D (Mar 18)

Hi All

After 8 weeks of waiting my PCT came up with the funding for Nilotinib. Today I start my week off of Glivec and start Nilotinib next Thursday. I have several questions.

1. Can I
Category: Uncategorised

Replies: 2

Last updated: 19 March 2010
sandy craine on 18 March 2010

Category: Uncategorised

Replies: 1

Last updated: 19 March 2010

Would you like to tell your story?
by zaviemiller (Mar 19)

Jerry Mayfield Posted this on his CMLNEWDRUG.COM website.
CML Combo/Trials...The cure we have been waiting for?

by Jerry Mayfield
Yesterday (March 17, 2010), I met with Dr. Talpaz about his

by sandy craine (Mar 18)

'New Horizons' is an international conference for CML and GIST patient advocates and group organisers. I am part of the steering committee and this year the conference will open with a video in
Category: Uncategorised

Replies: 1

Last updated: 19 March 2010
karen on 15 March 2010

Category: Uncategorised

Replies: 1

Last updated: 16 March 2010

News report
by sandy craine (Mar 16)

See also Times Online article which has some very good comments... direct links to both articles are under Newswire.
Sandy

by karen (Mar 15)

Just seen this article on the internet today - worth a look:

http://www.dailymail.co.uk/health/article-1257944/NICE-rejects-cancer-dr...

K
Category: Uncategorised

Replies: 1

Last updated: 16 March 2010
Tufty3 on 14 March 2010

Category: Uncategorised

Replies: 8

Last updated: 22 March 2010

Stress and CML
by yogiB (Mar 22)

If you put ph levels in blood' into Google, it will come up with a whole lot of info.
Sadly all the things we like most - proteins, carbs (bread and grains generally), alcohol etc are acid 'ash'

by Tufty3 (Mar 22)

Hi Beth
That's really interesting; do you have anymore details on this, such as articles or websites etc.?
Many thanks

Chris

by Tufty3 (Mar 22)

Hi Karena
Thanks for sharing your thoughts. It's a vicious circle isn't it, because the CML causes stress and then the stress can't be good for the CML and so on.
Thanks

Chris

by Tufty3 (Mar 22)

Hi Olivia
Thanks for your thoughts on this; I'm convinced there is a link . Did you get the chance to ask your doctor?
Rgds

Chris
Category: Uncategorised

Replies: 8

Last updated: 22 March 2010
bobosbo on 11 March 2010

Category: Uncategorised

Replies: 8

Last updated: 15 March 2010

Log reduction
by vickiep (Mar 15)

Wow Phil! Thank you so much for such a straightforward explanation!

Vickie

by Jeanette Douglas (Mar 15)

Thanks Phil. That makes sense. Yes it is confusing and I sometimes feel it's easier just to nod my head at the specialist and not ask as it's not always clear what I should be asking. Best wishes

by PhilB (Mar 15)

Hi Jeanette,

All these numbers certainly can get confusing!
Basically there are 2 ways to measure you progress. One of them is to look directly at your cells to count how many are Ph+ This

by Jeanette Douglas (Mar 14)

Hi All

I haven't posted for awhile but still read the forum regularly. When I saw this topic it got me wondering about my own situation. On diagnosis, I remember my specialist saying that
Category: Uncategorised

Replies: 8

Last updated: 15 March 2010
sandy craine on 10 March 2010

Category: Uncategorised

Replies: 1

Last updated: 10 March 2010

Thanks
by Alyson (Mar 10)

Sandy,
We too thank you so much for your tireless commitment and hope you will soon be fighting fit.
Just viewing some of the petition comments has encouraged Brian and I to spread the word to our

by sandy craine (Mar 10)

Thanks for the get well messages. I just had a cold and sore throat but it was enough to stop me feeling well enough to travel 200 miles to Manchester. However, I did send the petition to the
Category: Uncategorised

Replies: 1

Last updated: 10 March 2010
skiinglaketahoe on 9 March 2010

Category: Uncategorised

Replies: 2

Last updated: 12 March 2010

Ian Pins and Needles
by ian hinley (Mar 12)

Thanks, it is more like prickly heat now like someone touches you with a hedgehog in the middle of your back! Only every now and again, but mainly during and straight after exercise...
It is not

by Alyson (Mar 10)

I have sometimes experienced pins and needles in my hands and am currently on Dasatinib but on a very reduced dose of 20mg. I did report this fact to my doctor a few weeks ago but after he checked

by skiinglaketahoe (Mar 9)

Hi Ian
You asked about the side effect of pins and needles. I had very bad pins and needles on both glivec and sprycel. It started about 4 months after I started glivec; starting at first in my feet
Category: Uncategorised

Replies: 2

Last updated: 12 March 2010
karen on 9 March 2010

Category: Uncategorised

Replies: 5

Last updated: 10 March 2010

NICE Meeting Today - Sandy
by sandy craine (Mar 10)

Hi Steven, yes someone could have gone. I did ask if anyone was available to come with me to the meeting, but I assumed that no one was as I did not have any answers.
Sandy

by Don Adkins (Mar 9)

Get well my friend...
Don

by karen (Mar 9)

Sorry to hear you are ill - hope you feel better soon.

Kx

by Steven D (Mar 9)

Hope you get better soon
Shame someone else could not have gone in your place.
Steven
Category: Uncategorised

Replies: 5

Last updated: 10 March 2010
wkeeping on 8 March 2010

Category: Uncategorised

Replies: 4

Last updated: 11 April 2010

Re-immigrating to UK
by eileena (Apr 11)

Hi, It may seem a bit obvious but it could help if you got a copy of your medical records / results etc from Japan translated into English to make it easier for your new GP / Consultant to

by wkeeping (Mar 10)

Dear Pennie and Lynn,
Many thanks for the useful information. Glasgow definitely sounds promising. I certainly plan to try and get more information from NHS, but wanted to get as much background

by lynnsch (Mar 9)

Hi Bill,
I was dx'd in London but was working in Glasgow. They have a centre of excellence at Gartnavel Hospital and they are a fantastic, so if you are heading to Scotland, I would see if you can

by Pennie (Mar 9)

Hello Bill,

I am no expert on all this and can only make some possible suggestions, perhaps direct contact with the dept of health might be a way to get some answers.
The specialist
Category: Uncategorised

Replies: 4

Last updated: 11 April 2010
claudia.fernandezf on 8 March 2010

Category: Uncategorised

Replies: 3

Last updated: 23 March 2010

Glivec / PCR and Pregnancy
by claudia.fernandezf (Mar 23)

Sandy, Thanks for your advise and the time you have tu aswer me....
This forum gave me a place to talk as free as I want and with person who undestande as well.
Thx for made this site and this place

by zaviemiller (Mar 11)

Y A H O O !!! Y I P P E E E !!!
Number 1306 in the Zero Club
Zavie
e-mail: zmiller@sympatico.ca

by sandy craine (Mar 10)

Dear Claudia,

welcome to this discussion forum, and please do not worry about your English which is excellent. I wish I could speak Spanish as well as you speak English.......

As you

by claudia.fernandezf (Mar 8)

Hi,
My name is Claudia Fernandez, I`m from Dominican Republic and I been with CML since 1999 and with Gleevec since 2001 and negative since 6 month after been using Gleevec.

Now I have 30
Category: Uncategorised

Replies: 3

Last updated: 23 March 2010
ian hinley on 8 March 2010

Category: Uncategorised

Replies: 6

Last updated: 9 March 2010

Travel Insurance again
by Steven D (Mar 9)

Try Snowcard.
They cover the both of us worldwide at £136 per year.including CML
I dont think thats bad.
http://www.snowcard.co.uk/pages/index.asp
Good luck

steven

by dianed (Mar 9)

I have cover for CML and my husband's medical condition through Medici Travel Insurance, for two weeks to Malta. It may be worth ringing them on 0845 5800168, or try the website www.medicitravel

by Pennie (Mar 8)

We have just insured with them, both Bill and I have medical problems, and we are ancient !! We are fully covered for europe. Phone No 01689 859102

Pennie

by ian hinley (Mar 8)

Will take a look, I did the Age Concern quote online and they said they wouldn't cover me. I'll try calling them...
Category: Uncategorised

Replies: 6

Last updated: 9 March 2010
sandy craine on 8 March 2010

Category: Uncategorised

Replies: 1

Last updated: 9 March 2010

Parliamentary Questions -Hansard written answers- 04/03/10
by irenekallison (Mar 9)

Reading up on Mr O'Brien I linked to his recent 'Twitter' page and found this:-

"Debate today on funding challenge for the NHS. Budgets rising 11% over this year and next. Patient care not

by sandy craine (Mar 8)

Thanks to John who sent me the following:
www.publications.parliament.uk/pa/cm200910/cmhansrd/cm100304/text/100304w0020.htm#10030475002140
Leukaemia: Drugs

Derek Twigg: To ask the Secretary of
Category: Uncategorised

Replies: 1

Last updated: 9 March 2010
V on 5 March 2010

Category: Uncategorised

Replies: 7

Last updated: 11 April 2010

Glivec ending migraines?
by eileena (Apr 11)

My daughter ( age 14 ) has had terrible headaches since diagnosis & starting imatinib in 09/09 we assumed it was a side effect of the medication. I wonder if anyone else has noted

by claudia.fernandezf (Mar 8)

Hi, I have been on Glivec since 2001 (19 years old), and every month with my period the migraine visit me since I had 10. Now I have 30 years old and still having migraine.
So, maybe it`s not the

by lynnsch (Mar 8)

Hi,
I was also suffered from migraines but didn't have one on Glivec and it was a very welcome side effect, I have since moved onto Tasigna and within the first week had a migraine, however in

by C Melling (Mar 6)

caroline m
I was diagnosed with CML exactly five years ago.

I have not had a migraine since taking Glivec and have rarely experienced headaches. I had many years of debilitating headaches and
Category: Uncategorised

Replies: 7

Last updated: 11 April 2010
CheryAnnes on 5 March 2010

Category: Uncategorised

Replies: 1

Last updated: 8 March 2010

CMLKid Blog
by vickiep (Mar 8)

Fantastic analogy! Now that really did make me smile a big, beaming smile.

Thank you so much for the sharing.

Vickie

by CheryAnnes (Mar 5)

Hello Everyone,
A young patient here in Canada is being followed by the Talpaz Protocol: http://clinicaltrials.gov/ct2/show/NCT00573378?term=Peg+IFN+CML&rank=1
He has started a blog and he has
Category: Uncategorised

Replies: 1

Last updated: 8 March 2010
bobosbo on 5 March 2010

Category: Uncategorised

Replies: 3

Last updated: 6 March 2010

Dasatinib working well
by jacqui from Colchester (Mar 6)

That is brilliant news - congratulations - I too have been taking it for six months and I am down to 0.7 I have just had a bone marrow biopsy and should get the results on the 23rd to see whether

by sandy craine (Mar 5)

Fantastic response to dasatinib Bob.... hope you can enjoy this news in spite of you sore throat.
Don is right... it is about money no matter how it is dressed up by NICE.
Sandy

by Don Adkins (Mar 5)

Hi Bob,
Congrats on your results! I think we CMLers all know the effectiveness of these newer drugs, but it's really all about money after all isn't it?
I would be long gone without Dasatinib...

by bobosbo (Mar 5)

Having been to the hospital today, due to a viral throat infection, & been given some antibiotics to fight it, I took the opportunity to get my first PCR results from the consultant. After only
Category: Uncategorised

Replies: 3

Last updated: 6 March 2010
Pennie on 4 March 2010

Category: Uncategorised

Replies: 10

Last updated: 5 March 2010

Withdrawl of Dasatinib/Nilotinid from patients
by Jed (Mar 5)

I'd just like to reassure you all that some MPs are better than others, and for those of you who haven't, it's certainly worth getting in touch with your local MP. Vince Cable recently put the

by Dennis (Mar 5)

Already have told him Sandy. Over a week ago. - No response.

by sandy craine (Mar 5)

Dear Dennis .. let him know he has lost your vote.

This is the only way we can exert power over politicians.
Best,

Sandy

by irenekallison (Mar 5)

Have managed to book an appointment with my MP, Maria Miller - Conservative, for the 19th March. Will make sure I am well prepared to, hopefully, get the maximum benefit from it.

Irene
Category: Uncategorised

Replies: 10

Last updated: 5 March 2010