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Vangogh on 29 March 2011

Category: Uncategorised

Replies: 4

Last updated: 30 March 2011

Results
by zaviemiller (Mar 30)

Hi Tony,

I would think that you are doing just fine. That is what Dr. Druker would say. If it is working well for you, then leave it alone.

In my own case, I was on 400 mg for 5 years before I

by sandy craine (Mar 30)

Hi Tony,

good to hear you do not suffer side effects. given that, it might be worth considering 600mg imatinib as it might just give you a couple of extra zero's and would not be likely to

by Vangogh (Mar 30)

Hi Sandy

I was dx in June 2008 sarted on Chemo, and after an apheresis procedure commenced Glivec 400mg in July 2008. I was then BCR/ABL 34.106%. March 2010 I was 0.0991%. I haven't

by sandy craine (Mar 29)

Hi Tony,

I know is a goal for all of us to see as many zero's as possible but your results- whilst they have not changed over the months- are pretty stable and that is a good place to be.
Category: Uncategorised

Replies: 4

Last updated: 30 March 2011
lloyd152 on 23 March 2011

Category: Uncategorised

Replies: 1

Last updated: 24 March 2011

EMS Research: Patient Study "CML"
by sandy craine (Mar 24)

Hi Lloyd,

I had actually deleted the post put on this form by the company you have given the link for. Whilst I undertand that you are free to take part in questionnaires of any type, this

by lloyd152 (Mar 23)

Hi all, My doctor forwarded me the details of this research project who are looking for participants (including those with CML) to complete a questionnaire - I thought it might be of some interest
Category: Uncategorised

Replies: 1

Last updated: 24 March 2011
sandy craine on 23 March 2011

Category: Uncategorised

Replies: 9

Last updated: 21 April 2011

NICE- Appraisal meeting for dasatinib/nilotinib and high dose imatinib for IM resistant CML in chronic phase
by sandy craine (Apr 21)

Hi Steven and all,

I cannot say much at the moment- we are subject to strict confidentiality agreements and cannot be seen to divulge the internal processes of NICE appraisal committees.

by Steven Davies (Apr 20)

Hi

Just wondering how the meeting went with panel. When will there be a decision.

Regards

Steven

by sandy craine (Mar 31)

Dear All,

just to say that we have a IM resistant patient who has volunteered to attend the NICE meeting with me on April 12th. Thanks Bob ;o)

Best wishes,

Sandy

by sandy craine (Mar 29)

Thank you for your support ;o) ......you need to concentrate all your efforts on getting to 0%- leave the fighting to others for now ;o)

Hope you are doing OK and not suffering too much with
Category: Uncategorised

Replies: 9

Last updated: 21 April 2011
ADJL on 20 March 2011

Category: Uncategorised

Replies: 8

Last updated: 2 May 2011

New arrival
by ruddoug09 (May 2)

Huge congratulations, My wife and I are about to start IVF in Newcastle on May 11th and very much hope to be reporting back in a few months with some good news, stories like yours give us hope

by alison28 (May 2)

A massive congratulations to you and your wife on your new arrival. I noticed that you state you are on the spirit 2 trial and taking dasatinib. I am also in the same trial and the same drug. If

by marsy (Mar 28)

Congratulations to all 3 of you.

You are right.....the new generation of drugs and treatment make all this possible.

Very Best Wishes for the future !

by sandy craine (Mar 23)

really lovely news. many congratulations on the birth of your lovely daughter.

Sandy
Category: Uncategorised

Replies: 8

Last updated: 2 May 2011
Steven Davies on 18 March 2011

Category: Uncategorised

Replies: 4

Last updated: 23 March 2011

Bosutinib v Glivec v Nilotinib
by sandy craine (Mar 23)

dear Steven,

please take a look at the home page ... I posted the latest trial data re: BELA trial which will give you some information on bosutinib vs imatinib.

Sandy

by Barbs (Mar 23)

Hi Steve,

there's a post about this on the Asian site at the moment - Bosutinib seems to give better results but causes more side effects like diarrhea & sickness,

best wishes

by Ali Loram (Mar 20)

Hi, I am currently on Bosutinib & will email you privately.

All the best

Ali

by sandy craine (Mar 19)

Hi Steven, I am not sure what to advise here. Is your response to nilotinib not as expected?

Given that the data from bosutinib is quite new - not sure how long the trials have been going- I
Category: Uncategorised

Replies: 4

Last updated: 23 March 2011
ni2i on 17 March 2011

Category: Uncategorised

Replies: 5

Last updated: 3 April 2011

painful legs
by Kate (Apr 3)

Hi Naomii

Just thought i'd reply to see how you are getting on with your leg pain. I hope it is easing now.

I am recently diagnosed too (Sept 2010) and had excruciating leg pain when I

by ni2i (Mar 19)

Just wanted to say thank you to everyone for the advice, im on day 12 of the medication now and my legs are still excruciatingly painful, but using hot packs etc for short term ease, i will defo

by sandy craine (Mar 18)

Dear Naomi,

the vast majority of us have this side effect in the first week/months of taking imatinib (Glivec). It does pass but is a very unpleasant experience while it lasts. I found that

by kathy (Mar 18)

Hi,i had the same problem when i first started taking glivec,the pain is horrid but it did pass after 4/6 weeks.

hope your doing ok,kath.x
Category: Uncategorised

Replies: 5

Last updated: 3 April 2011
jackieb38 on 17 March 2011

Category: Uncategorised

Replies: 17

Last updated: 2 May 2012

Drug Interactions with Glivec
by teddyb (May 2)

Thank you for replying Sandy.
Yes, anti-histimine indeed.

I will only use Zyrtec a week or two, and as ive read somewhere, zyrtec also seems to be given when Glivec causes rashing of the skin

by sandy craine (May 1)

Yes.... you are right. The proviso is not to take too much or take it regularly - as some people might do. The only issue with this kind of pain killer is that it is metabolised by the liver, as is

by ruddoug09 (Apr 30)

Having attended a seminar last year, a direct question to the consultant was if it was OK to take paracetamol. His answer was clear, yes it is absolutely fine to take paracetamol with Glivec.
I've

by sandy craine (Apr 29)

Many drugs can interact with imatinib. Below is just a partial list that I found on eMC Medicine Guides
I have not been able to find a note of interaction between Zyrtec and Glivec. Please check
Category: Uncategorised

Replies: 17

Last updated: 2 May 2012
Annie Kennedy on 10 March 2011

Category: Uncategorised

Replies: 3

Last updated: 12 March 2011

Travel Insurance - update
by sandy craine (Mar 12)

Hi Karena,

imatinib, nilotinib and imatinib are all a class of drugs described as targeted therapy. They are called tyrosine kinase inhibitorsor TKI's for short- and have a very

by karen (Mar 11)

Just wondering whether Dasatinib is classed as chemo? I know when I first went on it they said it was but i am not sure - any ideas?

K

by sandy craine (Mar 11)

Hello Annie,

thanks very much for posting this. It is very helpful and claryfies where the difficulties might lie- i.e with the interpretation of what is and what is not '

by Annie Kennedy (Mar 10)

Response from Medici travel:

Glivac is a medication that is NOT an oral chemotherapy, but can often be used in conjunction with Chemotherapy treatment.

So as long as the
Category: Uncategorised

Replies: 3

Last updated: 12 March 2011
ni2i on 7 March 2011

Category: Uncategorised

Replies: 3

Last updated: 19 March 2011

hydroxea
by Jojo (Mar 19)

hi Ni

yes I had a similar start post-diagnosis with rising WBC where they were adjusting the hydrae(sp?) dosage. i had several days of getting results before I even said 'so what's

by ni2i (Mar 9)

Hi Stuart

Thanks for the reply, yu have really put my mind at rest. I was panicked when i saw the results. I have started Glivec now. I saw Prof Clarke last week and he said the same phrase to

by Stuart Johnston (Mar 8)

Hi Ni

i was in a similar situation as you regarding hydroxcarbramide.

my first two weeks showed little reaction.the main focus was on getting the WCC count down to acceptable levels before

by ni2i (Mar 7)

Hi All

Benn back to the centre today to have my bloods done, i start my Glevic tonight (not looking forward to it) My question is, i have been on the hydoxea tablets for a fortnight had my
Category: Uncategorised

Replies: 3

Last updated: 19 March 2011
ian hinley on 5 March 2011

Category: Uncategorised

Replies: 6

Last updated: 8 March 2011

Plateau
by sandy craine (Mar 8)

Hi Ian... I agree with Pennie. Given you have been told you have a complex bcr/abl (I assume he meant complex translocation?) it might be best to get yourself referral- either to Kings or

by mariansy (Mar 8)

...know how you get on. I'm sure he will refer you. What Kings will do who knows. My experience was a fairly good drop between jan 06 and aug 06 to 0.983% No change in meds from Kings. I

by ian hinley (Mar 6)

Thanks for your responses, very useful and informative.

I have emailed Paul Hill with my concerns/questions and will see what he says.

Cheers

Ian

by vickiep (Mar 6)

After nearly five years, my results still aren't quite as good as yours, I'm seen at Eastbourne, with bloods going off to Kings. I'm on second line Dasatinib, after failing to respond
Category: Uncategorised

Replies: 6

Last updated: 8 March 2011
Kate on 5 March 2011

Category: Uncategorised

Replies: 1

Last updated: 8 March 2011

Arthritis update
by sandy craine (Mar 8)

Dear Kate... thanks for updating on your outcome. It is really good to hear that your break from therapy somehow solved the arthritis symptoms. It should give people lots of hope that side effects

by Kate (Mar 5)

Hello all,

I put up a post in December about having arthritis as a 'side effect' of Glivec.

I have been so busy since that I didn't get a chance to thank Sandy and Richard for
Category: Uncategorised

Replies: 1

Last updated: 8 March 2011
Moiraw on 5 March 2011

Category: Uncategorised

Replies: 13

Last updated: 30 March 2011

How long to wait for a transplant
by Moiraw (Mar 30)

Hospital in Dublin rang Alastair this morn to confirm he's got a viable donor. We're very happy. Scheduled for 23rd May. We are going to hospital next Tue to find out the itinerary

by sandy craine (Mar 18)

Dear Moira,

I understand why travelling to Dublin would be a problem with 2 small kids - but the safest place to have a transplant is always at a centre that has a lot of experience and I

by Moiraw (Mar 13)

Hi Sandy We live i N.Ireland. Alastair mainly treated in City hosp, Belfast but we live close to Altnagelvin hosp in Derry so that's where he gets his meds and transfusions. In Ireland, only

by sandy craine (Mar 12)

Dear Moira, thanks for letting me know why Alistair needs a transplant. I understand now and as he has an extra problem running alongside the Ph+ cell then transplant would be the obvious route.
Category: Uncategorised

Replies: 13

Last updated: 30 March 2011
Carol on 4 March 2011

Category: Uncategorised

Replies: 3

Last updated: 5 April 2011

Hammersmith Patient/Carer Support Group will be on Saturday 9th April 2011
by lynnsch (Apr 5)

.....I can only pop in for an hour as I have a baby shower to attend, but want to say hello and celabrate the start of the Ariad trial!

See you then

Lynn

by Steven Davies (Apr 3)

Looking forward to meting friends new and old

Steven

by bobosbo (Mar 26)

Looking forward to seeing everyone

Bob

by Carol (Mar 4)

Patient Support Group Meeting at Hammersmith Hospital

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du
Category: Uncategorised

Replies: 3

Last updated: 5 April 2011
cmlblogger on 4 March 2011

Category: Uncategorised

Replies: 1

Last updated: 8 March 2011

6 weeks on Dasatanib and feel much better
by sandy craine (Mar 8)

Dear Rob.... this is really good news. I had thought from your initial reaction of dasatinib that you might not handle it very well.... so - good to hear the you are feeling so much better now and

by cmlblogger (Mar 4)

Just wanted to share my expereinces since my moving to Dasatnib 6 weeks ago. You may recall I had a real bad first night but since then I have not experinced the same things. In fact since coming
Category: Uncategorised

Replies: 1

Last updated: 8 March 2011
sandy craine on 28 February 2011

Category: Uncategorised

Replies: 10

Last updated: 4 March 2011

1 in 4 cancer cases missed: GPs send away alarming number of patients, delaying vital treatment
by liz (Mar 4)

I had been diagnosed with another condition called Behcets 5 months prev to my CML diagnosis. That was in Oct 06, in Feb 07 i was put on a drug called MMF Cellcept. I was given a list of all the

by mariansy (Mar 4)

My story fits this thread. Dx back in Oct 05. I had been going to my GPs surgery on and off for about 4 months with a persistant cough, saw various locums who listened to my chest and couldn

by Richard42 (Mar 3)

Hi Lisa

That does seem bad - it is concerning that the practice of GPs in dealing with persistent complaints is so variable. In my own case, I went to the doctor a couple of years before I was

by lisad123 (Mar 3)

Darrens was missed for a long time, he went with lumpy bruises twice and was told they were cysts. He went about night sweats and chest infections.

He went the last time with me because he would
Category: Uncategorised

Replies: 10

Last updated: 4 March 2011
ni2i on 27 February 2011

Category: Uncategorised

Replies: 3

Last updated: 28 February 2011

what to i ask?
by zaviemiller (Feb 28)

Hi Naomii,

Welcome to the club that nobody really wants to be a member of.

Make sure that you get a copy of all your results. Don't worry about understanding the first report. After

by Vangogh (Feb 28)

Hi Naomii

Welcome to our club. It really depends on which tests you have had, as to what questions you can ask. If at the moment you have had only blood count tests you will need to know if the

by Alastair C (Feb 27)

Hi Naomi; welcome the club none of us applied to join, but with some great therapies which are now available and the support of each other through this site many, many members are leading very

by ni2i (Feb 27)

I was wondering if anyone could help me with the questions i should be asking the doctor on Tuesday when i go back. I have general questions to ask but what sort of questions do i ask about my
Category: Uncategorised

Replies: 3

Last updated: 28 February 2011
ni2i on 25 February 2011

Category: Uncategorised

Replies: 27

Last updated: 3 November 2011

Newly diagnosed with CML
by ni2i (Nov 3)

Hi jofl
Welcome to the club. I was dx in Feb this year. When i was told i thught that's it my little boy is gonna be left alone. Now 9 months on and to be honest i forget i have it (until tablet

by ni2i (Nov 3)

Hi Terry
Small world as i also live in Kinmel Bay. my email is naomiio@aol.com x

by joflo (Oct 31)

Hi Steven thanks for getting in touch, do they have the patient days quite regular? Think I would like to get to one at some point would be good to meet everyone and hear what the experts have

by terryhickmott (Oct 30)

Hi Ni,

I too live in North Wales (Kinmel Bay) and am 6 years post-dx.
I am happy to make contact if you like cerries@aol.com or www.leukaemianorthwales.org

Terry
Category: Uncategorised

Replies: 27

Last updated: 3 November 2011
Annie Kennedy on 24 February 2011

Category: Uncategorised

Replies: 6

Last updated: 25 February 2011

Travel insurance - that old chestnut......
by chrissie (Feb 25)

Hi there

Last October my healthy husband and I got insurance online with Columbus for annual multi trips excluding USA and Canada. I declared CML but said I wasn't on chemo ( Is Glivec chemo

by Alastair C (Feb 25)

We visited Cairo and did a Nile cruise last year - very pleased we ticked that trip off the list before the current troubles! I was struggling to find a sensible quote but got good cover at a

by Annie Kennedy (Feb 24)

Many thanks - would welcome any input that cuts down my legwork or phonework...

Email address annie_kennedy@btinternet.com

by marsy (Feb 24)

Hi ,

I needed cover for a trip to Australia last November, after being diagnosed last August. I carried out some checks with various insurance companies and made some notes.

If you could
Category: Uncategorised

Replies: 6

Last updated: 25 February 2011
Annie Kennedy on 21 February 2011

Category: Uncategorised

Replies: 1

Last updated: 23 February 2011

Weird Question - dental implants....
by Vangogh (Feb 23)

Hi Annie

I had a dental implant 6 months prior to being dx with CML (2008). The only thing that hurt was the price, £1200. I have had absolutely no problem with it at all.

by Annie Kennedy (Feb 21)

Some of us CMLers seem to be plagued with teeth problems - please don't worry if your teeth are fine it just seems to be a minority of us who have problems - my teeth are weak, break easily and the
Category: Uncategorised

Replies: 1

Last updated: 23 February 2011
sandy craine on 23 February 2011

Category: Uncategorised

Replies: 4

Last updated: 6 April 2011

Transplant
by Parmjit (Apr 6)

Haven't posted for some time. My young son was dx in 2003 at the age of 10 and was initially treated with hydroxurea and then glivec. Response to glivec gave concern after 18 mths as it seemed

by Michael.. (Mar 31)

Hello David,

I have not been on the site for quite a while, found it most useful when i needed information and support. Sandy was a star for me when i needed help.

I think it's right that

by marsy (Mar 31)

Hi David.... Thanks for the update and details described superbly. I really feel for you and what you are going through - you are so unlucky that the TKI's are not working.

However,

by DavidABall (Mar 31)

Hey all,

I thought I would update everyone on my progress. I hope this post finds all well.

I am now being cared for between Sheffield Hallam (Proffessor Riley, Dr Dalley and Dr Snowdon) and
Category: Uncategorised

Replies: 4

Last updated: 6 April 2011