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sandy craine on 20 April 2010

Category: Uncategorised

Replies: 3

Last updated: 23 April 2010

NICE
by Tufty3 (Apr 23)

Hi All

This is so hard and unfair making those of us who's future depends on this decision, wait any longer! It reminds me of turning up for my blood results in the early days

by PhilB (Apr 21)

"We have been told by the government to hide in a cupboard until the election is over in case we say or do anything that might lose them votes"

by Richard42 (Apr 20)

We (NICE) don't want politicians breathing down our necks on this one. But we (patients) want the politicians to be dealing with the problem because NICE doesn't work properly.

by sandy craine (Apr 20)

Dear All,

I have had the following communication from NICE regarding the likely date that we will hear about the outcome of the March ACD meeting and resultant FAD. It looks like we will not
Category: Uncategorised

Replies: 3

Last updated: 23 April 2010
vickiep on 17 April 2010

Category: Uncategorised

Replies: 9

Last updated: 7 May 2010

Dasatnib delay
by karen (May 7)

Hi Vickie

It would certainly be worth asking your onc for a different service. I am at Kent and Canterbury Hospital and to my knowledge no one on Dasatanib gets a prescription they all go

by vickiep (May 6)

Thanks Karena...took just five days from another chemist, so that's fine. I am interested in what you say though because my Onc knows how hard it is for me (don't drive, live rurally..)

by karen (May 6)

Hi Vickie

Weirdly enough I don't get a prescription - never have. When I first started I got my drugs through the hospital pharmacy and my consultant just used to send the details across and

by vickiep (Apr 29)

My Dasatnib remained missing...I really don't know what's going to happen about it as my small, independent chemist can't afford to be out of pocket like that. He tells me that a
Category: Uncategorised

Replies: 9

Last updated: 7 May 2010
Rosie on 15 April 2010

Category: Uncategorised

Replies: 31

Last updated: 10 June 2010

Worried
by dmc23 (Jun 10)

Thanks Vickie.

As for tiredness, I can happily say that my energy is coming back to me, and dozing on arriving home from work is a thing of the past.

Up until recently, I found it hard to

by alison28 (Jun 10)

hi stuart thank you for your reply.

yes im a member of a club nobody wants to join, ha ha! i can say that everyday i feel more positive about things and the more stories i read the more

by Stuart Johnston (Jun 9)

Hi Alison.

Sorry to hear you have joined our club.

the good news is the future for us CML'S is looking better each day.

I was diagnosed last March at Wigan hospital as a result of a

by alison28 (Jun 9)

hi ali thank you for replying iam finding these sites very helpful.

like you i thought it was great that even though i was eating loads i was still loosing weight, great eh?!! little did i know
Category: Uncategorised

Replies: 31

Last updated: 10 June 2010
Apryl on 15 April 2010

Category: Uncategorised

Replies: 3

Last updated: 17 April 2010

CAN YOU HELP ME UNDERSTAND MY BLOOD TEST
by Apryl (Apr 17)

Thanks steve/Sandy

I'm having another blood test at the end of the month at the GP's so perhaps I can get them to explain it then.

by sandy craine (Apr 15)

Dear Apryl,

not sure what 'wood' means either? Platelets normal rage 150 - 450

diff means differential

Neu 37.1 'L' means your neutrophils are Low as you

by Steven D (Apr 15)

Hi Apryl

Sorry to hear that your not to good.

When are you going to see your cml consultant. Maybe if its not for a while it might be better to see them a bit earlier to get another

by Apryl (Apr 15)

Hi all

If there is anyone out there that understands hospital jargon, perhaps you could help me understand my blood test results. Had my usual test done a few weeks ago at Hinchingbrook
Category: Uncategorised

Replies: 3

Last updated: 17 April 2010
ian hinley on 14 April 2010

Category: Uncategorised

Replies: 4

Last updated: 15 April 2010

GLIVEC short supply at Royal Surrey report
by michael (Apr 15)

I have unused Glivec,and its of no use to me or any body because once its been prescribed to a patient it cant be recycled into the system,any one else with spare supplys.

by Apryl (Apr 15)

I dont know if anyone has seen it, but there is someone in the UK who is (dont know if they still are) trying to sell Glivec on Ebay, item no. 120546960348. with a starting bid of .99p. I sent

by michael (Apr 14)

The other view is that the £300,000 is enough money to fund thirty people to have Glivec,As long as patients health doesn't suffer,were all winners

by Don Adkins (Apr 14)

This is not only disgusting but deplorable. What goes through the minds of people like this...What makes them tick -- greed?

Don
Category: Uncategorised

Replies: 4

Last updated: 15 April 2010
liz on 14 April 2010

Category: Uncategorised

Replies: 3

Last updated: 15 April 2010

3 month reviews
by liz (Apr 15)

Thanks all, I am very pleased with my results...

I hope I can move to longer appts soon, I am in clinic next week so I shall ask.

Liz x

by zaviemiller (Apr 15)

YAHOOO!!! YIPPEEE!!!
Number 1317 in the Zero Club
Zavie

My doctor has moved me to every 4 months. Once you have a consistant low PCR the CML experts are now moving to test every 6 months and

by Don Adkins (Apr 14)

Hi Liz,

I Can't answer your questions but I wanted to commend you on your results -- outstanding!

Healing wishes your way,

Don

by liz (Apr 14)

Hi, I have been on Glivec now for over 3 years and doing well, PCR has been 0.00% for 2 years 4 months. The thing is I still have to clinic every 3 months. I am not sure if my doc will increase
Category: Uncategorised

Replies: 3

Last updated: 15 April 2010
irenekallison on 13 April 2010

Category: Uncategorised

Replies: 1

Last updated: 14 April 2010

NICE response to Daily Mail
by sandy craine (Apr 14)

Hi Irene, yes I agree it is an interesting response from NICE and I detect a defensiveness? This is a good sign in my view and shows the pressure for the many patient groups does have some effect

by irenekallison (Apr 13)

http://www.nice.org.uk/newsroom/news/NICERespondsToDailyMailStory.jsp

Very intersting eh?!

Also there may be some delay before NICE give us our long awaited info!

http
Category: Uncategorised

Replies: 1

Last updated: 14 April 2010
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