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ADJL on 26 April 2010

Category: Uncategorised

Replies: 5

Last updated: 3 May 2010

Not alone
by sandy craine (May 3)

Dear Adam,

Thanks for your post about your experience having a diagnosis of CML. I am so glad that you have found a good centre for your treatment and that you have good support given that you

by kate32 (Apr 28)

Hi Adam

That make sense to me too. I understand where you are coming from! It takes a while to get your head around things and you can only do things when your ready. It took me

by ADJL (Apr 28)

Hi Kate,

Thanks for responding to my post!!

I'm glad to hear that your treatment is still so effective 18 months on from diagnosis.

It would be nice to meet up at some stage, but

by kate32 (Apr 27)

Hi Adam

This is my first post on this forum too! I am 34 and I also live in Bristol. I am under Frenchay/Southmead Hospital. I was diagnosed in Nov 08 and am mostly doing well and am
Category: Uncategorised

Replies: 5

Last updated: 3 May 2010
ian hinley on 26 April 2010

Category: Uncategorised

Replies: 1

Last updated: 26 April 2010

After 4 Months 0.5 log reduction
by zaviemiller (Apr 26)

Hi Ian,

Welcome to the club that nobody really wants to be a member of.

I would make sure that you get a copy of all your test results. It will allpw you to follow your progress. They are very

by ian hinley (Apr 26)

Hi all, had my first results since starting Gleevec today and my Haematologist said I had a 0.5 log reduction but didn't have the figures with him ?!?! He said he was looking for
Category: Uncategorised

Replies: 1

Last updated: 26 April 2010
angela on 26 April 2010

Category: Uncategorised

Replies: 6

Last updated: 23 May 2010

Travel Insurance - Shop Around
by goofyfoot (May 23)

£1480 for single trip to New York He was diagnosed nearly 4 years ago and remains stable and otherwise healthy

This is outragous! Has anyone please got any ideas of other insurance

by Dennis (Apr 29)

Obviously, the reason some people get refused insurance and the reason we get different quotes, is down to the answers we give. For instance, I'm always asked if I am currently on

by angela (Apr 28)

Hi Michelle,

Thanks very much for your kind words.

The travel company is called Orbis Insurance Services based in Bexhill, Sussex. Tel: 01424 217107

They were really helpful and when you go

by Bill (Apr 27)

Hi. I bought insurance from Medici

www.medicitravel.com

They were really helpfully and very cost effective. I bought mine for the year. I cannot remember but I think the whole family and
Category: Uncategorised

Replies: 6

Last updated: 23 May 2010
Ali Loram on 26 April 2010

Category: Uncategorised

Replies: 4

Last updated: 4 May 2010

Stopping Nilotinib & dose reduction.
by Ali Loram (May 4)

I have just finished the third dose of steroids via IV. I have never had such an extreme reaction before. My face & neck were burning red sore & swollen. My eyes had started to swell and

by sandy craine (May 3)

HI Ali,

I hope the rash and other effects clear up soon. Also hope you can try the lower dose as it looks like it might be fine. Remember the standard dose of dasatinib began at 140 mg and then

by Bhiru (Apr 30)

Jed is also now on the 300mg dose which has helped with side effects.

At the time that he changed doses we were told about some recent research that had been done to compare outcomes of

by lynnsch (Apr 28)

Hi Ali,

I recently moved over to Nilotinib and I am on 300mg. I believe that there are a few of us who are on this dosage and achieving good responses but with fewer side effects.

I hope
Category: Uncategorised

Replies: 4

Last updated: 4 May 2010
Pennie on 23 April 2010

Category: Uncategorised

Replies: 2

Last updated: 23 April 2010

Current advice on changing from one 2nd generation TKI to another please
by michael (Apr 23)

Sorry to hear your news Pennie,contact Diabetes uk for advice, they will be outraged if your access to Dasatinib is denied,especially since the costs are about the same.I am diabetic so I

by sandy craine (Apr 23)

Dear Pennie... I am so sorry to hear that you have developed diabetes! what a challenge! Regarding the problem with changing drugs and PCR's etc. I suggest that you contact Kate Spall... who

by Pennie (Apr 23)

I am in the unhappy situation of probably having to change from Tasigna to Dasatinib, due to onset of diabetes. As this counts intolerance, what is the current advice on approaching PCT for
Category: Uncategorised

Replies: 2

Last updated: 23 April 2010
Pennie on 23 April 2010

Category: Uncategorised

Replies: 1

Last updated: 26 April 2010

Current advice on changing from one 2nd generation TKI to another please
by Ali Loram (Apr 26)

Pennie, please could you email me privatly? ali@loram2028.fsnet.co.uk

Thanks

by Pennie (Apr 23)

I am in the unhappy situation of probably having to change from Tasigna to Dasatinib, due to onset of diabetes. As this counts intolerance, what is the current advice on approaching PCT for
Category: Uncategorised

Replies: 1

Last updated: 26 April 2010
chrissie on 20 April 2010

Category: Uncategorised

Replies: 3

Last updated: 21 April 2010

PCR results delay
by chrissbb (Apr 21)

Hi My results go to Leeds, and it has been over 4 weeks since i have had my blood test, i still have no results.

I,m hoping to hear something soon, i know we get anxious, and the delay only

by irenekallison (Apr 21)

I have had a couple of 'late' results + lost in post once. If late my consultant has phoned thro for a FAX'd copy and phoned me with the results so try getting the consultant to chase

by karen (Apr 20)

Mine normally are back in about 3 weeks but saying that I have had 2 occassions where my blood has gone off in the post (!) so no results and once it went missing in the post (!) so never assume.

by chrissie (Apr 20)

My blood went to Hammersmith on March 12 for the PCR results but the results aren't back yet although my local hospital thought 2-3 weeks. I'm wondering how long it usually takes to get
Category: Uncategorised

Replies: 3

Last updated: 21 April 2010
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