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sandy craine on 26 March 2010

Category: Uncategorised

Replies: 2

Last updated: 27 March 2010

Kate Spall- Exceptional Case Appeals.
by Tufty3 (Mar 27)

Many thanks to Kate, for offering her experience and time to help us out in our hour of need and thanks to Sandy for posting the details on the website. Is it worth making a permanent link on the

by Dennis (Mar 26)

That's a really fantastic offer from Kate. I would urge anyone who thinks there's even a slight chance that they might need access to one of these drugs, to contact her. Don't leave anything to

by sandy craine (Mar 26)

I was recently contacted by Kate Spall who does fantastic work in helping and representing patients who need to use the exceptional case appeal process in order to get access to drugs on NHS.
Category: Uncategorised

Replies: 2

Last updated: 27 March 2010
sandy craine on 25 March 2010

Category: Uncategorised

Replies: 2

Last updated: 26 March 2010

Petition
by sandy craine (Mar 26)

Hi Chris... well it obviously did the trick as we are now at 1411! I will decide what to do this weekend as I have spoken with a few people 'in the know' and it has been pointed out to me that as

by chrissbb (Mar 25)

Hi Sandy ,

I have just sent the link to 6 people i had not originally posted it on to, so fingers crossed anytime this afternoon it should reach it. Hope your well. Chris.

by sandy craine (Mar 25)

1398.... !! so near to 1400. If any of you can persuade people who might not have signed... husband/wife/daughter/son/sister/brother/cousin/neighbour etc etc then I can close it at 1400... we only
Category: Uncategorised

Replies: 2

Last updated: 26 March 2010
jacqui from Col... on 24 March 2010

Category: Uncategorised

Replies: 1

Last updated: 25 March 2010

Dasatinib working well
by sandy craine (Mar 25)

Dear Jacqui, congratulations on such a quick response. You must be feeling great!
Sandy

by jacqui from Colchester (Mar 24)

HI everyone, Just an update for you all - I am on the Spirit 2 trail and have been taking dasatinib for nearly 7 months. I had a biopsy at 6 months (liquid only) and my FISH results were 0.034.
My
Category: Uncategorised

Replies: 1

Last updated: 25 March 2010
chris on 22 March 2010

Category: Uncategorised

Replies: 10

Last updated: 28 March 2010

Withdrawl of Dasatinib/Nilotinid
by Steven D (Mar 28)

I have been in touch with Novartis and it is my understanding that once you are on the new TKI's you cannot be taken off it by a PCT unless there is clear clinical evidence that to carry on would

by michael (Mar 27)

Thanks Vickie

by vickiep (Mar 25)

Hi Michael...big hugs to you, your family and your predicament..

Vickie

by michael (Mar 24)

Hi Pennie,I have no problems about getting TKIs,I am refering to new patients.

I am sadly not helped by either 1st or 2nd generation TKIs.

my options are BMT or nothing.

At the 50/
Category: Uncategorised

Replies: 10

Last updated: 28 March 2010
vickiep on 22 March 2010

Category: Uncategorised

Replies: 13

Last updated: 29 April 2010

Flatulence!
by vickiep (Apr 29)

Hi Beth,

This JUST can't go on...I've cut out a few bits and pieces, but trying to eat healthily to do something about the weight gain on these drugs, is making the problem worse...so,

by Pennie (Mar 26)

Ah but now we know just how 'warm hearted' you are Vicky !!!
By the way have you tried acidophilus? (spelling might be wrong) Biocare might be people to get it from.

ATB
Pennie

by vickiep (Mar 25)

Thank you everybody...I'm retiring into my solitary existence having acutely embarrassed myself today...I will try all your wonderful suggestions for which I thank you from the heart of my bottom!!

by Alastair C (Mar 23)

Yes I have a significant flatulence issue - have found it is improved by taking some "nice bacteria" to quote the advertisement - I use Actimel which has certainly helped with, but not eliminated,
Category: Uncategorised

Replies: 13

Last updated: 29 April 2010
David on 22 March 2010

Category: Uncategorised

Replies: 2

Last updated: 22 March 2010

Fund raising for Leuka - Mount Kilimanjaro climb
by David (Mar 22)

Lyn
Thank you so much. I am sure they will have fun but, as you may know, this is not an easy challenge, with the risk of altitude sickness and the need to carry oxygen. I feel confident they will

by lynnsch (Mar 22)

What a fantastic effort! Good luck to your sons and I hope they have fun whilst raising as much money for Leuka as possible.
Lynn

by David (Mar 22)

I hope you don’t mind us writing a begging post.
Val’s two sons, James and Ian, are going to climb Mount Kilimanjaro, 19,341 feet, in September this year to raise money for Leuka. Leuka funds life
Category: Uncategorised

Replies: 2

Last updated: 22 March 2010
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