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sandy craine on 8 February 2010

Category: Uncategorised

Replies: 14

Last updated: 10 February 2010

Imatinib intolerance
by pat preston (Feb 10)

Dear friends,
I have asked my friend Pat Preston to post this for me because I do not have a computer but I do know about what cmlsupport are trying to do about the decision by NICE to not fund

by PhilB (Feb 10)

You have to dig a little deeper to see the true insanity of the NHS and VAT. Yes the NHS is charged VAT, but it is then able to recover it from HMRC. In order to maximise this VAT recovery they

by sandy craine (Feb 10)

Dear Irene, thank you for sharing your experience of imatinib intolerance. As your story clearly illustrates 'intolerance' is not quite as straight forward or simple as the word implies. It can be

by sandy craine (Feb 10)

Hello Steven,

I hope your PCT is prepared to fund nilotinib. Talking of savings- just implementing a system of one phone call to remind patients of their appointments -like my dentist and
Category: Uncategorised

Replies: 14

Last updated: 10 February 2010
yogiB on 7 February 2010

Category: Uncategorised

Replies: 1

Last updated: 8 February 2010

just joined so nice not to feel alone!
by cmlblogger (Feb 8)

I am not sure there is any real long term (10+ years) knowledege yet as the drugs haven't been available for that long
for me when I was DX'd my GP said I had 1-3 years to live without treatment and

by yogiB (Feb 7)

Hi everyone - my name is Beth and I feel really grateful that this site exists.
I have had a pretty extraordinary 3 months since being dx and have been in BC remission for a month, with a PCR test
Category: Uncategorised

Replies: 1

Last updated: 8 February 2010
yogiB on 6 February 2010

Category: Uncategorised

Replies: 12

Last updated: 12 February 2010

Holistic and complimentary regimes
by jacqui from Colchester (Feb 12)

Hi Beth
Im based near colchester - hey happy birthday it was my birthday on the 31st so we are both aquarians

Hwy don't you have my email address and we can discuss what we are getting up to

by yogiB (Feb 10)

Yes - it is a wonderful feeling. My entire journey has been full of signs, portents, good wishes and revelations. Where I had been wondering ;what's the point... not in a depressed way... I really

by jacqui from Colchester (Feb 10)

Yes I am doing fine - infact I noticed that you have read Louise Hay's books and I have been working on a similar path.

Although I didn't realise that I was ill when I was diagnosed - my

by yogiB (Feb 9)

and how are you doing?
Thank you for reaching in and sharing what you have been doing.
I have found it a really wonderful time for 'taking stock', addressing what needs to be addressed and looking
Category: Uncategorised

Replies: 12

Last updated: 12 February 2010
sandy craine on 5 February 2010

Category: Uncategorised

Replies: 5

Last updated: 9 February 2010

Number 10 petition response.
by Janet (Feb 9)

Hmm, don't be too confident about the position in Wales. The AWMSG says very clearly on their website that NICE judgements take precedence.
Janet

by Richard (Feb 9)

Yes, I know, but, as a welshman, I didn't want to be partisan! I live in England, but, although the side effects of the Imatinib are uncomfortable, I am not allergic to, or intollerant of it. My

by cmlblogger (Feb 8)

Wasn't there a discussion/change in NHS funding where patients could top up funding for medication where the NHS wouldn't and not impact their NHS funding.
I know for some people finding that extra

by sandy craine (Feb 6)

Yes Richard, and also Wales. I was in touch with a member of ours last year who had to do this. But we need to fight for parity with the rest of the UK and Europe.

Best wishes,

Sandy
Category: Uncategorised

Replies: 5

Last updated: 9 February 2010
johnh on 5 February 2010

Category: Uncategorised

Replies: 1

Last updated: 5 February 2010

No 10 Response to Petition
by sandy craine (Feb 5)

Hi John..... just posted my thoughts at the same time as you.

Yes....... I agree that the battle goes on in the light of NICE separating intolerance from resistance. See my comment on this

by johnh (Feb 5)

I have just received a response from the Government to the Dasatanib and Nilotonib petition.
"In response to the concerns that many people have about the availability of dasatinib and nilotinib for
Category: Uncategorised

Replies: 1

Last updated: 5 February 2010
chrissie on 4 February 2010

Category: Uncategorised

Replies: 6

Last updated: 8 February 2010

Puffy eyes
by kurt (Feb 8)

I have been on Gleevec for 5 months now, and have only suffered from one eye being puffy once, it was not sore, just felt uncomfortable, went away after 3 days though.

by chrissie (Feb 6)

Thank you all so much for your tried and tested remedies. I shall be trying all of them in the hope that at least one may help! Mustn't grumble, though, as I feel fortunate that this is the only

by lynnsch (Feb 5)

Hi Chrissie,
Although I never got rid of my eye bags completely, drinking water made a massive difference for me. Before dx I drank the 1.5 litres a day but when I was taking Glivec I needed to

by sandy craine (Feb 5)

Hi Chrissie...... unfortunately this is a common side effect of imatinib and there is little that can be done. I had this side effect for the 4 years or so I was taking IM and never really found a
Category: Uncategorised

Replies: 6

Last updated: 8 February 2010
fish4 on 4 February 2010

Category: Uncategorised

Replies: 2

Last updated: 5 February 2010

Newswire Webcast LL Society
by Olivia (Feb 5)

I'd like to add my thanks to Sandy - as well as informing me when I talk to the doctor, it will help me to explain things to my family.

Olivia

by vickiep (Feb 4)

I got a very great deal from the program which is presented in an easily understandable language and a language which I now feel more confident in using with my clinician. Well worth taking the tim

by fish4 (Feb 4)

Hi All
The webcast posted in the newswire section today is for me the best and most "street talk" explanation of CML that I have heard. I got an enormous amount of info out of it
Sandy thanks for
Category: Uncategorised

Replies: 2

Last updated: 5 February 2010
Olivia on 4 February 2010

Category: Uncategorised

Replies: 1

Last updated: 4 February 2010

Thank you Sandy and everyone else
by sandy craine (Feb 4)

Dear Olivia,

thank you for taking the time to let us know that you find this site valuable and supportive. It really helps to know that people are still finding it to be a useful resource. Of

by Olivia (Feb 4)

I have not posted since starting on Glivec three months ago, but I wanted to let everyone know how extremely valuable this site is (but of course you all knew that). I have used it many times, and
Category: Uncategorised

Replies: 1

Last updated: 4 February 2010
Johannah on 31 January 2010

Category: Uncategorised

Replies: 5

Last updated: 1 February 2010

Rib Pain
by Peter Miles (Feb 1)

Hi Johannah

Haven't taken anything so far except for a few deep breaths. I too notice it more if I am dehydrated or tired.

Peter Miles

Southport UK

by remw (Feb 1)

remw

I used to get this quite often after playing a lot of sport, for me I think it was related to being a little dehydrated and tired. I notice it sometimes if I have not drunk enough fluids

by Johannah (Feb 1)

Thanks Chris and Peter for getting back so quickly. Do you take anything for the pain when it gets bad?

best wishes

Johannah

by Peter Miles (Jan 31)

Hi Johannah and Chris

I'm on Glivec and have not experienced rib pain as such but the muscles (the less flabby bit!)around the lower ribs in particular keeps going into spasm - very painful
Category: Uncategorised

Replies: 5

Last updated: 1 February 2010
cmlblogger on 29 January 2010

Category: Uncategorised

Replies: 8

Last updated: 10 February 2010

New Travel Insurance questions
by johnw1001 (Feb 10)

Have had CML for 3 years now -at first a big problem to find an insurer but found

JD Travel Insurance -Gill Noble

01689 859 102

www.jdtravelinsurance.co.uk
At first they suggested

by Vangogh (Feb 3)

Hi Been trying to get covered for annual worldwide multi-trip,

Amex, Fortis, Age Concern,Medicitravel all declined!!! I have CML for 2years BCR/ABL at 0.0268% so no problems, but nobody seems

by cmlblogger (Feb 3)

Thanks Sandy
I have no real issue about not being covered for CML issues, as I don't have any I was just really wondering if anyone had been asked for these blood counts in the past as I have'n't

by Annie Kennedy (Feb 1)

Just for comparison - our policy is annual multi trip covering myself, healthy husband and 4 kiddies. Cost is £119 per annum (total for all of us). The reason that it is so much lower is that ours
Category: Uncategorised

Replies: 8

Last updated: 10 February 2010
sandy craine on 27 January 2010

Category: Uncategorised

Replies: 5

Last updated: 2 February 2010

NICE- dasatinib/nilotinib
by Pennie (Feb 2)

These are the same conclusions I came to. Also I agree with your comments with concern at the 'split' in logic between intolerant and resistant.
I guess NICE is allowed to split logic !!
Perhaps

by Simon Clayson (Feb 2)

Since I first read the news I have been trying to follow the logic of this.
If they are no longer going to compare nilotinib and dasatinib with the ineffective but cheap hydroxycarbimide and

by Richard42 (Jan 29)

Makes sense not to include high dose imatinib as a comparator for imatinib intolerant patients, but equally makes sense at least partially (eg if the reason is effective dose for a given patient)

by sandy craine (Jan 29)

Dear Pennie,

still thinking about it but for a start it seems that they have been forced to listen to some of the pressure, but only some. Because NICE refused to accept high dose IM as a
Category: Uncategorised

Replies: 5

Last updated: 2 February 2010
jacqui from Col... on 26 January 2010

Category: Uncategorised

Replies: 8

Last updated: 6 February 2010

Dasatinib Trial first PCR results
by Basil from RSA (Feb 6)

That's great news!

Your response is great and as long as it gets better or stays the same you are doing well!

I think Des and I are just very fortunate to have kept our response off

by jacqui from Colchester (Feb 3)

Peter
Thank you I wished I knew within myself how great this result is - I still don't really understand and my Consultant said it was a great result but would liked to have seen 0.07 rather than 0.

by jacqui from Colchester (Feb 3)

My email address is jacqui@cookbrickwork.co.uk Look forward to heaing from you
jacqui

by Peter Miles (Jan 30)

Congratulations Jacqui - fantastic results. As Sandy suggests - take some time out to celebrate.

God Bless

Peter
Peter Miles

Southport UK
Category: Uncategorised

Replies: 8

Last updated: 6 February 2010
Basil from RSA on 25 January 2010

Category: Uncategorised

Replies: 4

Last updated: 8 February 2010

Des and Basil
by kurt (Feb 8)

Good luck to you guys, and my deepest 'thanks' for having the guts to try. It gives me long term hope, I have only been on Gleevec for 5 months so I have a long way to go still, but if there is a

by Basil from RSA (Feb 2)

Thank you very much for the information you sent me as well as the above post.

I am very interested to also find out about the vaccine under development that Des mentioned.

There are so

by Barbs (Jan 31)

That's great news! well done - I'm going to tell my doctor about it - he's got quite a few patients in the stopping Glivec trial & if I stay PCR-U until july, I can participate if I want to -

by sandy craine (Jan 26)

Dear Basil,

this is good news.... 9 months is pretty good and looks like you might well hold on to PCRu status without imatinib. If you want to know the ongoing results of the French study
Category: Uncategorised

Replies: 4

Last updated: 8 February 2010
bobosbo on 22 January 2010

Category: Uncategorised

Replies: 1

Last updated: 23 January 2010

Dasatinib trial
by jacqui from Colchester (Jan 23)

Hi Bob

I too see the BBC look East and thought the same. I am on dasatinib and doing well

by bobosbo (Jan 22)

Hello everyone,

I have just watched BBC Look East news, one of the headlines was about Colchester hospital starting trials of Dasatinib for men suffering from prostate cancer. I hope that
Category: Uncategorised

Replies: 1

Last updated: 23 January 2010
chris murphy on 21 January 2010

Category: Uncategorised

Replies: 3

Last updated: 24 January 2010

CML - dasatanib and bowel cancer
by Matthew Wilson (Jan 24)

Good luck Brian. Am absolutely sure you will be fighting fit in no time!!

by Matthew Wilson (Jan 24)

Good luck Brian. Am absolutely sure you will be fighting fit in no time!!

by sandy craine (Jan 23)

Dear Chris,
I am sorry to hear that Brian has to agree to such an invasive procedure as total bowel removal but wish him the best outcome possible. It must be daunting for him to contemplate, as

by chris murphy (Jan 21)

Hi
If this is of interest to anyone who gets in this position. Brian, my husband has had CML for three years and is doing very well with dasatanib is now having a bowel cancer operation on next
Category: Uncategorised

Replies: 3

Last updated: 24 January 2010
Andy Parkin on 21 January 2010

Category: Uncategorised

Replies: 5

Last updated: 25 January 2010

Article in Leukemia Jan 2010 edition
by sandy craine (Jan 25)

Dear Andy,
Thanks for the alert to this article which is very good and timely.

See Newswire.....
SandySandy

by sandy craine (Jan 25)

Thanks Ian, I have put the link to the PDF under Newswire.
Sandy

by Andy Parkin (Jan 24)

Thanks Ian, Looks as though this link works well!!

Andy

by ian hinley (Jan 23)

http://www.nature.com/leu/journal/v24/n1/full/leu2009193a.html
Category: Uncategorised

Replies: 5

Last updated: 25 January 2010
Pennie on 20 January 2010

Category: Uncategorised

Replies: 2

Last updated: 23 January 2010

Latest PCR
by sandy craine (Jan 23)

Hi Pennie, this is a really good result and I am sure -as we all love zero's- you are not far off and eventually will get a run of them ;o)

regarding insomnia... it is a real problem for some

by Andy Parkin (Jan 21)

Hi Pennie,

0.011 still sounds good. Well done and long may the low/zero readings continue!!

May see you Monday at Kings CML patient group?

Regards Andy

by Pennie (Jan 20)

Got results from Kings today 0.011. Oh why can't I get a decent run of zero !!!!! Still this is a good result, and I and the consultant are OK with it.
Feeling great on Nilotnib, the insomnia/
Category: Uncategorised

Replies: 2

Last updated: 23 January 2010
karen on 20 January 2010

Category: Uncategorised

Replies: 3

Last updated: 20 January 2010

Meeting at Hammersmith Hospital
by bobosbo (Jan 20)

Hi Karena,

The Carol that i mentioned is Carol Davies who's email address is at the bottom of the post about the meeting:

CAROL DAVIES - steven.carol@ntlworld.com

you could try

by karen (Jan 20)

Hi Bob

I just wanted to check as it was a while ago it was posted on here. Is there somewhere else I can check in future?

K

by bobosbo (Jan 20)

Karena,

As of 3days ago the meeting still appears to be on, as Carol has bumped it up the list. do you suspect differently?

Bob

by karen (Jan 20)

Hello

Does anyone know if the scheduled meeting is still on this Saturday?

Many thanks K
Category: Uncategorised

Replies: 3

Last updated: 20 January 2010
ian hinley on 19 January 2010

Category: Uncategorised

Replies: 1

Last updated: 19 January 2010

See NICE are at it again...
by Richard42 (Jan 19)

This is something I think we all feel very unhappy about and it is a political issue. Why is NICE so often contradicted by other assessors? Do they use a different model and if so why? Do their

by ian hinley (Jan 19)

http://news.bbc.co.uk/1/hi/scotland/8467346.stm
Category: Uncategorised

Replies: 1

Last updated: 19 January 2010
Pesty on 15 January 2010

Category: Uncategorised

Replies: 8

Last updated: 6 July 2012

Fuzzy/full sensation in head
by BHPenfold (Jul 6)

Hi All,
I was diagnosed with CEL (FIP1L1-PDGFRA+) 2 months ago. While not CML, it is very similar and there are no support groups that I have found in the UK.
My mother had AML, and my daughter ALL

by Matthew Wilson (Jan 19)

Sandy,
Thanks for your comments, I am very pleased believe me!!
As for Imatinib and CEL. Well, it's licenced for certain types, but not all subtypes of CEL. It's a rare Leukaemia with 3 or 4

by sandy craine (Jan 18)

Dear Michelle,
that does sound like a strange experience but I am sure it would not be air escaping from your brain. It is more than likely that owing to the extra fluid retained around the area of

by sandy craine (Jan 18)

Dear Mathew,
good to know you are responding well to imatinib and that this drug is effective in CEL. PCRu is a great place to be.... fortunate is an understatement ;o)
Is imatinib licensed for use
Category: Uncategorised

Replies: 8

Last updated: 6 July 2012