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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
jaynelister on 26 January 2011

Category: Uncategorised

Replies: 3

Last updated: 31 January 2011

Not posted for a long time - just checking in
by sandy craine (Jan 31)

Hello Paul,

thank you so much for letting us know how Anne is doing. I am really pleased to hear that she has held her response- and remission- over the long term. It surely must be an

by Paul Cooke (Jan 28)

Hi to everyone, I've been using this site since 2004 shortly after my wife was diagnosed (September 2003). Just like Jayne I used to visit this site almost every day for support, an I found a

by sandy craine (Jan 27)

Hi Jayne... good to hear from you, and good to know that Aaron continues to do well. Your link is still here on the 'links' page and it is good to know your site is still active for both

by jaynelister (Jan 26)

Hi all,

I haven't been on this site for a long time, which I suppose is a good sign. However, I felt I wanted to come and just see how everyone was doing?
All is good here with Aaron doing
Category: Uncategorised

Replies: 3

Last updated: 31 January 2011
jackieb38 on 25 January 2011

Category: Uncategorised

Replies: 3

Last updated: 3 February 2011

Confused!
by zaviemiller (Feb 3)

Hi Jackie,

This was normal procedure in the early days. They would do BMBs until you reached CCR and then move on to the PCR test.

3 BMBs would be normal. One at diagnosis and then one every 3

by kathy (Feb 2)

Hi there,im under dr lucas at manchester,its a fantastic hospital and hes a great doctor.x

by sandy craine (Jan 26)

Hi Jackie... that is a lot of biopsies to suffer! Just to confirm, given that you have not yet shown any cytogenetic response as yet as you mention that you are in major HR rather than complete HR

by jackieb38 (Jan 25)

I've just come back from yet another bone marrow biopsy, my 3rd and I was only diagnosed on the 3rd August 10, and I asked why I was having so many when I know from speaking to others that no
Category: Uncategorised

Replies: 3

Last updated: 3 February 2011
sandy craine on 25 January 2011

Category: Uncategorised

Replies: 1

Last updated: 31 January 2011

Blocking rogue gene could stop the spread of most cancers
by sandy craine (Jan 31)

http://www.bbc.co.uk/news/health-12254242

Sandy

by sandy craine (Jan 25)

http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=1518

Scientists at the University of East Anglia have discovered a rogue gene which – if blocked by the right drugs
Category: Uncategorised

Replies: 1

Last updated: 31 January 2011
kathy on 22 January 2011

Category: Uncategorised

Replies: 1

Last updated: 23 January 2011

latest appointment,feel abit down.
by Barbs (Jan 23)

I know how you feel I was dx in May 2004 & am Ok about visits & blood tests, but every time I need a BMA I can't stop myself from crying ,even if it's not too painful.

I

by kathy (Jan 22)

I had my yearly appt on thursday at mancheater and everything went well ,the dr is really pleased with my progress and ive been in mmr for 4 years now ,so all is looking gud,but every time i
Category: Uncategorised

Replies: 1

Last updated: 23 January 2011
cmlblogger on 21 January 2011

Category: Uncategorised

Replies: 9

Last updated: 8 February 2011

First night on Dasatanib
by hcy0da (Feb 8)

It's nice to know I am not alone with my suffering and that things should settle after time.

I started taking Dasatinib last Thu having taking Imatinib since my transplant nearly 2

by cmlblogger (Jan 25)

Strangely enough on the last 4 years being on Imatinib I have sufferred less coughs and colds than prior to dx, and this with having contact with my 2 boys and a wife that works in a school where

by cmlblogger (Jan 25)

Thanks Annie - it is a good read and some great info

the link for others is http://www.newcmldrug.com/bms_discuss/default.asp

rob

by cmlblogger (Jan 25)

I did visit 2 hospitals in one tiring day so maybe some sort of of flu type thing (it was worse than the usual man flu) or just a coincidence, things have gotten a lot better since then.

thanks
Category: Uncategorised

Replies: 9

Last updated: 8 February 2011
alison28 on 18 January 2011

Category: Uncategorised

Replies: 11

Last updated: 28 January 2011

seminar 22nd jan
by karen (Jan 28)

Hello Shelagh

I remember your great posts from the Macmillan site (in the days when i could log in and post comments!). Glad you have found this site and you are well.

K

by shelaghnugent (Jan 28)

Hello everyone, I've just signed up to this site after getting details about it from the seminar in Liverpool. It was a good day, interesting and strangely comforting. Thanks to everyone who

by Helen NW (Jan 27)

I agree totally with everything you said about the Liverpool Seminar and want to thank the CML Team for organising such an excellent and informative day.

I was also diagnosed in late

by JulieCheshire (Jan 26)

I just wanted to say a very big Thank You to everyone involved in the Liverpool seminar.

This was our first seminar since my husband's unexpected diagnosis in August 2010 after a routine
Category: Uncategorised

Replies: 11

Last updated: 28 January 2011