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yogiB on 13 April 2010

Category: Uncategorised

Replies: 8

Last updated: 1 December 2010

alcohol and glivec?
by david_a (Dec 1)

Hi everyone,

I used to be a fairly heavy drinker before I was diagnosed back in july 2010, consuming around 50 units a week!

Now (on glivec) I have the odd occasional drink (just to be

by zaviemiller (Nov 26)

Hi Sarge,

Happy to hear that you are doing well on Gleevec. In fact, good enoung to join the Zero Club. So ...
YAHOOO!!! YIPPEEE!!!
Number 1368 in the Zero Club
Zavie

Gleevec is

by sarge (Nov 26)

Hey there.

I just found this forum by searching 'Glivec Alcohol' in google. I'm 24 diagnosed with CML when I was 10 and have been on Glivec for years. 5-10 I'm really

by lynnsch (Apr 14)

Hi Beth,

I was dx'd a year ago, and have to confess to being a fairly heavy drinker pre CML and have spoken at length with various consultants on this matter ;-). When I was on
Category: Uncategorised

Replies: 8

Last updated: 1 December 2010
fselman on 12 April 2010

Category: Uncategorised

Replies: 4

Last updated: 13 April 2010

After 2 years on Glivec my counts are starting to go up
by michael (Apr 13)

Fernando,

Your brothers and sisters just need a simple blood sample for the tissue typing,and you could try a higher dose prehap 600mg of Glivec you might be below optimum dosege at the moment

by fselman (Apr 13)

Thank you Sandy and Michael for your feedback. My daily dose is 400mg. Because of other health issues my hematologist and I agreed to wait for a month before switching medicine. At that time I

by sandy craine (Apr 13)

Dear Fernando,

I agree with Michael that it does no harm to have your brothers tested to see if they match. Mine were tested immediately on diagnosis (on 1999 pre Glivec) and my younger brother

by michael (Apr 12)

Whats your glivec dose?

And I can see no reason why you cant get your brothers tissue type done now as a reserve plan you need to know your options,and your lucky to have 4 brothers, the
Category: Uncategorised

Replies: 4

Last updated: 13 April 2010
sandy craine on 12 April 2010

Category: Uncategorised

Replies: 5

Last updated: 13 April 2010

teething problems with the new Forum
by kestrel (Apr 13)

Thanks for the explanation Sandy. It's beginning to look more familiar now, which is half the battle, but it will be even better if the techy guy can sort the little niggles out. Thank you for

by vickiep (Apr 12)

Hi Sandy,

Thanks for explaining why the new site was necessary.I don't have any problems with having to scroll to the right, but I am getting confused as to which postings I've read and

by ali (Apr 12)

New site is great but I must agree with Olivia, I don't like scrolling from left to right all the time

Ali

by Olivia (Apr 12)

I like the look and layout of the new site, but have a small problem when reading the comments - the text flows too far to the right and I have to keep scrolling backwards and forwards along the
Category: Uncategorised

Replies: 5

Last updated: 13 April 2010
Fibi0108 on 12 April 2010

Category: Uncategorised

Replies: 6

Last updated: 18 April 2010

Nilotinib side effects, advice needed
by Fibi0108 (Apr 18)

Thanks Sandy and all of you for your advice!

I think i wasn't not so clear with what i posted before. In fact, my husband was suffering from serious migraine since he was on Nilotinib

by Steven D (Apr 14)

Hi Fibi,

I have been on Nilotinib for 3 weeks tomorrow. In fact I have my first post glivec appointment at the Hammersmith tomorrow.

My consultant started me off on 400mg mornings and 200mg at

by Apryl (Apr 14)

Hi Fibi

I changed over to Tasigna nearly a year ago now. When I first went on it I wondered if I had done the right thing, I felt like I'd been run over by a bus. It does pass and in a

by lynnsch (Apr 14)

Hi Fibi,

I also moved to Nilotinib recently and felt awful for the first week, I had a migraine which sounds exactly like your husband. The good news is that it does pass quickly.
Category: Uncategorised

Replies: 6

Last updated: 18 April 2010
Darren on 9 April 2010

Category: Uncategorised

Replies: 5

Last updated: 12 April 2010

Understanding results
by Steven D (Apr 12)

Hi Darren,

Theses seem fin. look at the right hand column of this page and look at the FAQ's and look at pcr results. this may explain more.

However as your Dr admits he/she

by Steven D (Apr 12)

Hi Darren,

As you see everyone thinks your doing well however you should be seen at a center of excellence hospital either in Liverpool or Manchester.

These dr see patients with CML

by Darren (Apr 12)

Thanks chaps,

Im currently at Preston Hospital,

by zaviemiller (Apr 12)

Hi Darren, first ...
YAHOOO!!! YIPPEEE!!!

Number 1316 in the Zero Club

Zavie

Darren,

You have had an outstanding response. All you need to get a number in the
Category: Uncategorised

Replies: 5

Last updated: 12 April 2010
Apryl on 8 April 2010

Category: Uncategorised

Replies: 2

Last updated: 14 April 2010

Techno numpty would like to know latest news from NICE
by sandy craine (Apr 14)

Hi Apryl,

There will be no new guidelines published by NICE until after the election. I am sorry that you are finding the site less than easy.... we are working to sort out the problems but this

by Steven D (Apr 9)

Hi Apryl

Yes it is quite difficulkt to find you way round and yes its not as user friendly as the last web site.

As far as Im aware the decision has not been announced by y understanding is

by Apryl (Apr 8)

Sorry to be such a numpty but I cant find my way round this new website. I have been away on holiday and am out of the loop on the latest decisions from NICE. Has Tasigna and Disatimib been
Category: Uncategorised

Replies: 2

Last updated: 14 April 2010
Richard Wilday on 8 April 2010

Category: Uncategorised

Replies: 1

Last updated: 8 April 2010

The Gift of a Decade
by yogiB (Apr 8)

You give us more recently dx ones - great hope Richard!

Thank you and may you enjoy another decade cml free.

Beth

by Richard Wilday (Apr 8)

The 28th of March this year marked the tenth anniversary of being diagnosed with CML. As it turned out the timing was perfect. Jerry's web site and this one had just started, providing a fund
Category: Uncategorised

Replies: 1

Last updated: 8 April 2010
Olivia on 8 April 2010

Category: Uncategorised

Replies: 5

Last updated: 14 April 2010

Edinburgh
by Olivia (Apr 14)

12 it is, then. I look forward to meeting you.

by Swede (Apr 14)

Fine for Tuesday. 12 prob. best for me. Sure we'll recognise each other with those puffy eyes...!

by Olivia (Apr 14)

Yes I would like to meet up, and as it happens I am going to WGH next Tuesday - it'll be 6 months - at 11.00. Shall I come to Maggies after that, say 11.45 - 12.00? How shall

by sandy craine (Apr 14)

Hi Olivia, I do hope you can get a group going... it is so important to be able to talk to others who are in the same situation. I am sure there are other members who are based in Edinburgh -
Category: Uncategorised

Replies: 5

Last updated: 14 April 2010
Pennie on 7 April 2010

Category: Uncategorised

Replies: 9

Last updated: 10 April 2010

New web site
by Ali Loram (Apr 10)

I am finding the same as some others, its difficult to see what posts have been read & also the page doesnt fit the screen so well. I have to move the curser back & forth to read the pages

by kestrel (Apr 9)

I have the same problem with the 'new posts' thing - I have to check all the dates on the posts to see when they were written and then try to work out when I last looked! The old site used

by irenekallison (Apr 8)

I have to adjust line length anyway but one can't have everything!

Irene

by zaviemiller (Apr 8)

This kinda works. Problem is that it doesn't adjust the line length to accomodate the increase in font size, so you have to keep moving the page left/right in order to see the entire page.
Category: Uncategorised

Replies: 9

Last updated: 10 April 2010
Carol on 6 April 2010

Category: Uncategorised

Replies: 3

Last updated: 7 April 2010

Patient Support Group Meeting at Hammersmith, Saturday 17th April 2010
by michael (Apr 7)

could you tell us who your guest speakers are? and the topics they will speak about please?.Sounds a bit harsh but not living in the area, its a fair amount of effort ,time,cash to attend.

by Carol (Apr 7)

Hi,

We hold our Patient Support Meetings every couple of months at Hammersmith for both patients& Carers.

For people that have attended before we email them prior to our meeting for

by NataliaV (Apr 7)

That would be an event that most members should attend to. I guess you need to hand out to them some announcements and invitation so that they would not forget the date of that. Well, USPS is

by Carol (Apr 6)

Patient Support Group Meeting at Hammersmith

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road
Category: Uncategorised

Replies: 3

Last updated: 7 April 2010
ian hinley on 6 April 2010

Category: Uncategorised

Replies: 3

Last updated: 14 April 2010

This is interesting, shows someone is still working hard to rid CML
by sandy craine (Apr 14)

Hi Ian... thanks for providing the link to this article. I had meant to comment but I forgot owing to the Website redesign etc.

We have been aware of the search for a vaccine (and the various

by Olivia (Apr 9)

Good luck, Ian.

I am coming up to 6 months on Glivec, next results at the end of this month - I'll be thinking of you! Hope you haven't had too many horrible side-

by ian hinley (Apr 9)

this is a potential cure and some people are working hard to make it work...

The results seem very encouraging for all the 3 log reduction and lower cmlers, fingers crossed

by ian hinley (Apr 6)

http://www.news-medical.net/news/20100403/Study-Trial-vaccine-eliminates-residual-cancer-cells-in-CML-patients.aspx
Category: Uncategorised

Replies: 3

Last updated: 14 April 2010
nikks on 6 April 2010

Category: Uncategorised

Replies: 8

Last updated: 13 April 2010

i really need some help understanding this.
by Richard42 (Apr 13)

If CML, definitely not "wait and see". However, if CMML (which is different) then the doctor's advice may be right - I have a relative with this condition and that person is not

by PhilB (Apr 12)

I'd second all the comments above that if he does have CML then he should a) start Glivec immediately and b) change to a competent haemetologist. One thought though - is it possible that

by eileena (Apr 10)

Hi, It is always a terrible shock to be told that someone close has leukaemia. My daughter then aged 13 was diagnosed with CML in Sept '09. I can honestly say the care she receives in

by Annie Kennedy (Apr 6)

Glasgow is undoubtedly the best CML centre in Scotland (i'm in Edinburgh) - Tessa Holyoake and her team are very highly regarded so he should be seeing them - best of luck getting to the
Category: Uncategorised

Replies: 8

Last updated: 13 April 2010
robert mcadie on 5 April 2010

Category: Uncategorised

Replies: 2

Last updated: 6 April 2010

glivec
by robert mcadie (Apr 6)

Thanks Peter

I feel more reassured now. When I was first diagnosed in 2003 I was told that the Glivec had an average working life of 5 - 7 years. I'm now coming up to 7 years on Glivec

by pstacey (Apr 6)

Hi Bob

Basically, for patients in chronic phase, who respond to Glivec and are not intolerant to it (i.e. do not experience an intolerable level of side-effects) the progression rate is very low

by robert mcadie (Apr 5)

Hi

Just wondering does anyone have any idea of the average time that glivec supports the non progression of this illness into the accelerated phase .

Bob
Category: Uncategorised

Replies: 2

Last updated: 6 April 2010
sandy craine on 5 April 2010

Category: Uncategorised

Replies: 8

Last updated: 16 April 2010

New website design for our 10 year anniversary
by sandy craine (Apr 16)

Dear Beth,
thanks for your comments... I will certainly add them to the list and keep them in mind when we do an overview of the new site and the tweaks it needs.
I am not too clear on what you

by yogiB (Apr 16)

Sandy

Some added suggestions!

I miss the fact that I can no longer access the forums that I have voiced myself on - rather I now have to trawl through all

the entries. I liked the personal

by fselman (Apr 6)

Thank you Sandy for your efforts. It helps not to feel alone,

even if we are at the end of the world.

Cheers,

Fernando

by danielchee (Apr 6)

Dear Sandy,

Great looking and lovely. A million thanks for your

dedication to helping us understand CML better.

daniel
Category: Uncategorised

Replies: 8

Last updated: 16 April 2010
SwanValleySue on 4 April 2010

Category: Uncategorised

Replies: 1

Last updated: 5 April 2010

Children with CML
by sandy craine (Apr 5)

Dear Sue,
Jayne Lister set up the group 'Children with CML' .....www.childrenwithcml.org.uk

I am sure you will find members on there that will be willing to share information.
Sandy

by SwanValleySue (Apr 4)

Children with CML
In Australia the numbers are increasing with children being diagnosed with CML.
Each child depending on age and when diagnosed is individual as are all our management regimes.
Is
Category: Uncategorised

Replies: 1

Last updated: 5 April 2010
sue on 3 April 2010

Category: Uncategorised

Replies: 3

Last updated: 10 June 2010

Sad News Loss of Yorkshire Region CML Support Group Member
by alison28 (Jun 10)

i am so sorry to read this sad news, i am a newly diagnosed and it just makes me so sad to read this. love warmest wishes to all the family.xxxx

by sandy craine (Apr 4)

Dear Sue,
Thank you for letting us know about Rebecca. Blast phase CML is a very difficult disease to conquer and I am so sorry that Rebecca was unable to overcome the post transplant complications

by SwanValleySue (Apr 4)

Even though I come from Australia - my heart goes out to Craig and his children, Oliver and Francessca.
My sister-in-law passed over with ovarian cancer when she had just turned 36 years old leaving

by sue (Apr 3)

I have been asked by Craig Bray,husband of Rebbeca, who are members of the Yorkshire Region CML Support Group to inform everyone that Rebbeca sadly passed away on 31/04/10 after a brave fight with
Category: Uncategorised

Replies: 3

Last updated: 10 June 2010
ian hinley on 3 April 2010

Category: Uncategorised

Replies: 9

Last updated: 5 April 2010

NICE not getting good press which is nice...
by Dennis (Apr 5)

I certainly wasn't electioneering. It really is quite difficult to keep politics out of the Dasatinib and Nilotinib debate, considering that over the past few months some of us have been lobbying

by Steven D (Apr 5)

Whilst the press is full of gossip and rumour mungering it seems only fair to point out the parties that seem to have the same goal as us and that is getting drugs for any type of health sufferer

by michael (Apr 5)

I agree with Sandy,This is a place for good advice,surport and humanity,and consideration for others.Lets keep it that way.

by sandy craine (Apr 5)

Whilst it is understandable that during the general election period some of us may feel the need to express our political views and preferences.. Please remember that others might not share the same
Category: Uncategorised

Replies: 9

Last updated: 5 April 2010
cassidy62 on 2 April 2010

Category: Uncategorised

Replies: 1

Last updated: 5 April 2010

fightin fit
by sandy craine (Apr 5)

Congratulations on your 10k run. You are right to be proud of such an achievement and you have proven that CML does not need to control your life. A lot of us now have access to such effective

by cassidy62 (Apr 2)

not been on for awhile as my 9mth daughter takes up most of my time! just a quickie to let you know that last mth i did a 10k in 54mins (pb) and was so proud and me and my husband are off to
Category: Uncategorised

Replies: 1

Last updated: 5 April 2010
Steven D on 28 March 2010

Category: Uncategorised

Replies: 2

Last updated: 28 March 2010

Mail on Sunday Article Another rejection by NICE
by michael (Mar 28)

The worlds gone mad when the advice of Prof Mufti is ignored(Prof Mufti is a great man),NICE decisions are all about money,The very sick in the UK are paying with their lives for the faliure of the

by Pennie (Mar 28)

Many Steven thanks for posting this excellent article.
This drug has been many many years in research and development, and is as big a breakthrough for MDS as Glivec was for us. Prof Mufti has

by Steven D (Mar 28)

There is a very good article in todays Mail on Sunday by Proffesor Rodney Taylor who himself is suffering from MDS.

The link is below
Steven D
www.dailymail.co.uk/health/article-1261234/A
Category: Uncategorised

Replies: 2

Last updated: 28 March 2010
Carol on 26 March 2010

Category: Uncategorised

Replies: 1

Last updated: 6 April 2010

Patient Support Group Meeting at Hammersmith, Saturday 17th April 2010
by karen (Apr 6)

Hope it's a good meeting, sorry I can't attend this time

K

by Carol (Mar 26)

Patient Support Group Meeting at Hammersmith

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road
Category: Uncategorised

Replies: 1

Last updated: 6 April 2010