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loadmastersrock on 8 April 2011

Category: Uncategorised

Replies: 5

Last updated: 30 October 2011

White cell count spike and flying things
by cdw5000 (Oct 30)

James,

i would very much like to contact you. I'm serving and have CML - i'd love to know how many of us are in. Not sure if you can contact me via username, if not please re-post and

by Alastair C (Apr 11)

I've had another look at this in the light of who your employer is. It seems that the requirements of the DDA are now included in the Equality Act of Oct 2010. This carries on most of the

by vickiep (Apr 10)

I'm no legal buff, but my own experience is that I wok for County Council, work in a Primary School. If ever I have a "blip" resulting in any time off, I'm sent to see the

by loadmastersrock (Apr 9)

well i sort of left out my employer lol as its the Royal Air Force and im a loadmaster and fly. however my current role is non critical in flight and to be honest im little more than a chief
Category: Uncategorised

Replies: 5

Last updated: 30 October 2011
Smahmood on 3 April 2011

Category: Uncategorised

Replies: 2

Last updated: 3 April 2011

fluid intake whilst on Glivec?
by lynnsch (Apr 3)

Hi,

Pre CML I used to drink around 2.5 litres but now I'm on about 3.5 - 5 litres depending on my daily activities and coffee drunk (an extra glass for every coffee). Although I have moved

by johnh (Apr 3)

I'm no expert but I believe that 2 litres a day is the usual recommendation. I find that hard enough, 4 litres would be very difficult. You would spend half your day drinking and the

by Smahmood (Apr 3)

Hello

I was just wondering what is the recommended fluid intake whilst on glivec? Is four litres a day too much?

Regards
Category: Uncategorised

Replies: 2

Last updated: 3 April 2011
Anna on 1 April 2011

Category: Uncategorised

Replies: 8

Last updated: 13 May 2011

Another new arrival
by vickiep (May 13)

VERY well done you!!! That can't have been an easy ride, but what a result!

I applaud you and wish you lots of love and happiness for sharing a long future with your family.

xx

Vickie

by Peter Miles (May 12)

Dear Anna - My congratulations to you and your partner on the birth of Ava. God bless you all!

by CS (May 12)

Your welcome I really am so pleased for you, its so good to hear about a succesful birth! Thank you so much for answering my questions it was really helpful to hear how you got on! Im currently

by Anna (May 12)

Hi

thanks for the congratulations! The return to Glivec is going well, just getting through the cramp/bone aches and sickness and starting to get used to it again.

Re: the interferon - to
Category: Uncategorised

Replies: 8

Last updated: 13 May 2011
Cynthia P on 1 April 2011

Category: Uncategorised

Replies: 5

Last updated: 14 April 2011

Stopping Glivec
by fehr (Apr 14)

I developed lower back pain about four years ago, about the same time as I started on Gleevec, although it might have been there earlier - can't really remember I am now

by Cynthia P (Apr 4)

Thank you Sandy,

As always you come up with helpful comments,I have had a blood test from the Dr, which shows normal readings, although he may not have been testing for low magnesium levels, I

by Cynthia P (Apr 4)

Thank you Basil, helpful to know somebody else is successfully weened from Glivec, though I am not knocking it as I know it has been a life saver for me, though the fact that bone pain

by sandy craine (Apr 1)

Try asking your doctor to check your levels of magnesium. if this mineral is low it can cause joint pain and muscle cramps.

You can supplement with magnesium oil by rubbing it on the skin-
Category: Uncategorised

Replies: 5

Last updated: 14 April 2011
Basil from RSA on 31 March 2011

Category: Uncategorised

Replies: 4

Last updated: 7 April 2011

Update from Basil in South Africa
by Basil from RSA (Apr 7)

The figures I gave were not expressed as a BCR/ABL:ABL ratio, but expressed as a percentage of BCR/ABL.

The actual BCR/ABL ratio on undetected results were 0.0000

The RTQ-PCR tests are very

by Andy Parkin (Apr 5)

Basil, Very many congratulations on the 23 month report. I am sure a position that all CML patients on drug therapy aspire to.

Very best wishes for the next 4 month test.

One query? When your

by sandy craine (Apr 1)

Dear Basil.... great news and thanks for the update. I was wondering how you were getting on. Hope this continues- it is such good news.

Best wishes,

Sandy

by karen (Apr 1)

Basil they are truly brilliant results - long may they continue!

K
Category: Uncategorised

Replies: 4

Last updated: 7 April 2011
jackieb38 on 30 March 2011

Category: Uncategorised

Replies: 3

Last updated: 31 March 2011

Is Glivec classed a a chemotherapy?
by chrissie (Mar 31)

Try Columbus - we found it by far the cheapest.@ £84.95 for annual worldwide travel excluding USA and Canada for two of us (both early 60s and only me with CML).

regards

Chrissie

by jackieb38 (Mar 30)

Thanks,

Must've missed that before.

x

by Dennis (Mar 30)

http://www.cmlsupport.org.uk/node/6818

by jackieb38 (Mar 30)

Hi all,

We are just thinking about booking a holiday and was looking at travel insurance when I came across the question 'are you currently undergoing chemotherapy?' do I answer yes or
Category: Uncategorised

Replies: 3

Last updated: 31 March 2011
sandy craine on 29 March 2011

Category: Uncategorised

Replies: 7

Last updated: 1 May 2011

Macedonia- CML patients do not have access to imatinib
by sandy craine (May 1)

Dear friends,
27th of April 2011 is BIG day for CML patients in Macedonia !
On this day the Steering Committee of Health Insurance Fund of Macedonia brought a Decision that Imatinib will be

by chrissie (Apr 6)

Thanks, Richard and Sandy.A pity!

regards,

Chrissie

by sandy craine (Apr 5)

Hi Richard,

thanks for this clarification on the patent timing. I suppose it would make sense as Europe was slightly behind in getting the licence for imatinib. But by the time we reach 2016 I

by Richard42 (Apr 2)

The protection varies around the world based on patent and patent term extension laws varies because those laws are not identical: the US patent expires in 2015. In the UK the patent is extended
Category: Uncategorised

Replies: 7

Last updated: 1 May 2011
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