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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
heg on 20 February 2011

Category: Uncategorised

Replies: 2

Last updated: 21 February 2011

Nilotinib and stomach pains
by lynnsch (Feb 21)

Hi Hayley,

I agree with Pennie, I had terrible trouble with my stomach initially, which was a complete turnaround from Glivec. It is now completely fine and I achieved this by changing my

by Pennie (Feb 21)

Hi Hayley, Tell John one of the major problems I had when starting Nilotinib was terrible constipation. And I do mean terrible !!! Get him to monitor this, and take prune juice

by heg (Feb 20)

Hi,

Can anyone help with info? My husband started taking Nilotinib (150mg am, 150mg pm) on Thursday. he started with stomach pains yesterday. He says it feels like his middle stomach
Category: Uncategorised

Replies: 2

Last updated: 21 February 2011
marsy on 18 February 2011

Category: Uncategorised

Replies: 5

Last updated: 26 February 2011

Annuities and CML
by Jenny Freeman (Feb 26)

Single life, it was only a small policy I had taken out as a AVC to my main pension but any little bit helps.

Jenny

by marsy (Feb 25)

Thanks for the info Jenny,

Was yours based on a single life or Joint /Partner/last survivor. ?

Cheers

by Jenny Freeman (Feb 25)

Hi Dave

I negotiated an enhanced annuity last May with Sally Mallinson at Financial Strategies; sally@financialstraegies.co.uk. She spent time speaking to me on the phone and was very

by marsy (Feb 23)

Cheers John.......Will look into that.

Dave M
Category: Uncategorised

Replies: 5

Last updated: 26 February 2011
Barbs on 17 February 2011

Category: Uncategorised

Replies: 1

Last updated: 17 February 2011

Glutathione
by sandy craine (Feb 17)

This sounds interesting although I have not heard of it being used here in the UK. I would be interested if you hear any more about it.

Hope you're well,

best wishes,

Sandy

by Barbs (Feb 17)

Has anyone else heard of this?

I went to a meeting this morning - a woman was trying to sell patches that you put on acupuncture points in order to stimulate energy, immunity etc;
Category: Uncategorised

Replies: 1

Last updated: 17 February 2011
louisepim on 15 February 2011

Category: Uncategorised

Replies: 6

Last updated: 19 February 2011

Getting Glivec whilst living abroad
by louisepim (Feb 19)

Thanks, Bee.

Louise

by Bee (Feb 18)

I would go with the EHIC reply and if you can get a 6 months supply - then go for it!

So long as you keep an address in the UK - there shouldn't be a problem. That's how most do it.

by louisepim (Feb 18)

Dear Bee,

My query was just about getting Glivec not other pills and potions. My Glivec is delivered by a company who are sent the prescription from the hospital Ihave my blood tests at.

by Bee (Feb 17)

Sorry, Louise - I didn't mean that people routinely come back to UK to get Glivec - perhaps some do, but I don't know of any.

I was just referring to general health pills and potions
Category: Uncategorised

Replies: 6

Last updated: 19 February 2011
CS on 9 February 2011

Category: Uncategorised

Replies: 9

Last updated: 24 June 2011

Pregnancy and nilotinib
by Kate (Jun 24)

Hi Ladies.

I read your posts with interest because I found out I had CML whilst trying for a second baby (inability to conceive was one of the things that sent me to my GP).

I read about

by patrice (Jun 24)

Hi Ladies,
So good to hear about other people trying the same thing, had either of you had any luck? any further progress?

by patrice (Feb 16)

Hi there, I'm also looking for more information about pregnancy and what to do, as someone mentioned above your doc's appt's are really quick and they try and rush you out the door

by stella (Feb 15)

Yes, my email is stellajanesmith@gmail.com

It would be good to discuss it further.

Stella
Category: Uncategorised

Replies: 9

Last updated: 24 June 2011
jacqui from Col... on 9 February 2011

Category: Uncategorised

Replies: 3

Last updated: 24 February 2011

GOOD NEWS
by jacqui from Colchester (Feb 24)

Hi thanks for your comments, you must be on the same Trail as me. After the initial emotional termoil i decided to be positive and I really believe that is the key, I have been aiming for

by brassman (Feb 22)

Hi Jacqui.

Congratulations on your latest results. I started the spirit II trial in June 2010 and was randomised onto Dasatinib. I've had very few side effects and results so far have been

by sandy craine (Feb 14)

Dear Jacqui,

Many many congratulations on your low pcr result.

Best wishes,

Sandy

by jacqui from Colchester (Feb 9)

HI Everyone its been a while since I have posted. I just wanted to share my news with you all - I was diagnosed on the 9.9.09 and have been on the spirit II trial taking dasatinib - my last
Category: Uncategorised

Replies: 3

Last updated: 24 February 2011
chrissie on 8 February 2011

Category: Uncategorised

Replies: 3

Last updated: 11 February 2011

Grapefruit
by chrissie (Feb 11)

Thanks for your replies. Like you. Ali, grapefruit is my favourite fruit. Can't say how it would taste now, but oranges taste very metallic now I'm on Glivec, so I avoid them. Guess

by Ali Loram (Feb 9)

Hi Chrissie,

Your question isn't a silly one! My understanding is that we shouldn't have grapefruit in any form whilst taking any of the TKis. I don't even use a shampoo with citrus

by Barbs (Feb 8)

Hi Chrissie,

I must be even worse than you - I won't even eat grapefruit flavored sweets!

But in my heart of hearts I know I'm being OTT.

A couple of years ago when

by chrissie (Feb 8)

Hi Everyone

I have a rather silly question. We, Glivec takers, are not supposed to drink grapefruit juice as it affects the absorbtion of the medication. I have religiously avoided eating
Category: Uncategorised

Replies: 3

Last updated: 11 February 2011
lisad123 on 7 February 2011

Category: Uncategorised

Replies: 4

Last updated: 19 February 2011

Would you class 0.07 as remission?
by zaviemiller (Feb 19)

This is an excellent result. Achieving a 3 log reduction just about guarantees that he will never relapse with his CML.

There are several levels of remission. The first one is CCR. This occurs

by david_a (Feb 8)

He has achieved greater than a 3 log reduction, as a 3 log reduction would be 0.098% in his case.

I am also looking move house this year with a PCR of 0.07%, I too was looking for a

by lisad123 (Feb 7)

he started at 98% so is that still a 3 log reduction? Its been nearly 2 years since he was told CML and some good news has been a long time coming.

We are hoping to move so would like to have

by david_a (Feb 7)

Firstly well done to Darren with the result, this is something to be very pleased about!!

A major moleculor respone is a 3 log reduction from his PCR result at diagnosis.

A 3 log
Category: Uncategorised

Replies: 4

Last updated: 19 February 2011
marsy on 6 February 2011

Category: Uncategorised

Replies: 3

Last updated: 15 February 2011

Living in Australia
by Bee (Feb 15)

By the way - Australia does have a reciprocal Health Agreement with the UK ( as do many other countries outside the EU) for temporary visitors, i.e.holidaymakers and the like

by marsy (Feb 10)

Many Thanks Bee.

Really good information and lots to think about.

Cheers

by Bee (Feb 9)

I don't honestly know the answer to your question - but I know what happened to my sis-in-law when she and her husband emigrated last year. They fufilled a long held dream to join their two

by marsy (Feb 6)

Before being diagnosed last August, my wife Julie and I had plans to move to Australia in 4/5 years time. Our son obtained Permanent Residency there last April and the idea was to head out
Category: Uncategorised

Replies: 3

Last updated: 15 February 2011
alison28 on 4 February 2011

Category: Uncategorised

Replies: 3

Last updated: 4 February 2011

help with results!
by alison28 (Feb 4)

hi alastair and sandy and thank you for your replys.

I am on dasatinib and in the spirit 2 trial.

With regards to side effects, i still get the more common ones, headaches bone pain skin

by sandy craine (Feb 4)

Dear Alison,

I agree with Alistair that you have had a good response and should not worry as long as your results remain stable or preferably decrease further over the coming months.

by Alastair C (Feb 4)

Hi Alison. This looks pretty good to me. In the FAQ section on PCR I think the quote below is important.

"as long as the PCR is stable or decreasing, IM is having disease control and there

by alison28 (Feb 4)

hello everyone i hope you are all ok.

i went for one of my check ups yesterday ( manchester royal )

i asked for my results and they are at 0.557% the doc then went on to tell me
Category: Uncategorised

Replies: 3

Last updated: 4 February 2011
jackieb38 on 3 February 2011

Category: Uncategorised

Replies: 2

Last updated: 6 February 2011

Additional abnormalities on chromosome 3 any one else got this?
by lisad123 (Feb 6)

Darren has a weird one with the 8th but no one seems too fussed by it, theyhave just said its a side effect of the drugs.

by Vangogh (Feb 5)

Hi Jackie

When I was dn in June 2008 I was told I also had a chromosome adnormality regarding 4;15 in the Philadelphia positive clone.

Nobody at Kings seemed to know what it meant,

by jackieb38 (Feb 3)

Hi,

I was told today by my hematologist, just in passing as I was asking about various test results, that as well as the usual problems with chromosome 9 and 22 I also have an additional
Category: Uncategorised

Replies: 2

Last updated: 6 February 2011
ian hinley on 1 February 2011

Category: Uncategorised

Replies: 2

Last updated: 5 February 2011

Vaccine Trial at Southampton
by rickjohnson (Feb 5)

this is really interesting..

http://www.thebestblender.com/

by ian hinley (Feb 2)

http://www.controlled-trials.com/ISRCTN62678383

by ian hinley (Feb 1)

Hi all,

Not sure if you have seen this but I found it on a US CML site last night:
Southampton scientists begin patient trials of new leukemia cancer vaccine

A new cancer treatment which
Category: Uncategorised

Replies: 2

Last updated: 5 February 2011
dmc23 on 30 January 2011

Category: Uncategorised

Replies: 1

Last updated: 30 January 2011

Progress Update
by jackieb38 (Jan 30)

Hi David,

Congratulations on achieving CMR, that's great news!

I am on Mebeverine too, not the fybrogel sort though. I was told I would get free prescriptions for life as CML is a life

by dmc23 (Jan 30)

Dear All.
I wanted to share my latest results with you, and some news you may not be aware of.
I received my results at 10 months of Treatment on Thursday 27 January. My Philadelphia Cell Count is
Category: Uncategorised

Replies: 1

Last updated: 30 January 2011
Carol on 28 January 2011

Category: Uncategorised

Replies: 2

Last updated: 27 February 2011

Patient/Carer Support Group will be on Saturday 9th April 2011
by Steven Davies (Feb 27)

Hi, Looking forward to seeing everyone again.

Steven.

by bobosbo (Feb 2)

Hello Carol,

I will see you there, I am looking forward to seeing everyone again.

Bob

by Carol (Jan 28)

Patient Support Group Meeting at Hammersmith Hospital

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du
Category: Uncategorised

Replies: 2

Last updated: 27 February 2011