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mneale on 8 March 2012

Category: Uncategorised

Replies: 2

Last updated: 8 March 2012

Recently diagnosed and started on imaginable
by nigel (Mar 8)

Hi Mark, and welcome to this exclusive club. I was diagnosed in September last year at 45. Like you had leg cramps after a few days which lasted a 5-6 days and in the last 2 were really quite

by mneale (Mar 8)

Sorry to all my computer changed the title, please ignore as I have resubmitted.
Sorry
Mark

by mneale (Mar 8)

Hi all, I was diagnosed a week ago at Worcetser Royal Hospital. I had been unwell for some time and the diagnosis was picked up by chance by a blood test. Obviously as with everybody who is
Category: Uncategorised

Replies: 2

Last updated: 8 March 2012
Smahmood on 7 March 2012

Category: Uncategorised

Replies: 2

Last updated: 9 March 2012

Cramps
by Smahmood (Mar 9)

Hi Sandy
Thank you for your info/advice. I am going to see my consultant on Monday at Hammersmith Hospital. I have not thought about changing the therapy as I have had very good results so far and

by sandy craine (Mar 8)

Hi Shaz.... please read my own and others response to Mark who is newly diagnosed. I would say that excercise is essential... especially stretching but then that does seem to prompt muscle cramps.

by Smahmood (Mar 7)

Hi everyone
I have been on Glivec for nearly two years now and have been very fortunate in terms of side effects (hardly any). Recently i have started to have lots of cramps/spasams and because of
Category: Uncategorised

Replies: 2

Last updated: 9 March 2012
sandy craine on 7 March 2012

Category: Uncategorised

Replies: 1

Last updated: 18 March 2012

NICE- MTA nilotinib/dasatinib/400mg imatinib in 1st line- FAD due next week
by sandy craine (Mar 18)

The FAD for dasatinib, nilotinib in 1st line, will be published on the NICE website on either Thursday or Friday this coming week.
Sandy

by sandy craine (Mar 7)

Multiple Technology Appraisal

Dasatinib, nilotinib and standard-dose imatinib for the first line treatment of chronic myeloid leukaemia (incl part-review of TA 70)

The FAD (
Category: Uncategorised

Replies: 1

Last updated: 18 March 2012
chrissie on 6 March 2012

Category: Uncategorised

Replies: 2

Last updated: 7 March 2012

Streaming eyes? Possible remedy!
by Olivia (Mar 7)

Thanks for the suggestion, Chrissie - I thought that streaming eyes was just another of those things we have to learn to live with. I went to the chemist this morning, who said that

by sandy craine (Mar 6)

Hi Chrissie..... this seems like great advice from the Boots optician! It's the first time I have heard this explanation of this particular side effect in over 10 years. Thanks for posting this

by chrissie (Mar 6)

Hi All
Having been on Imatanib for two and a half years with streaming eyes for much of that time, I have been trying to find something to combat this side effect. Last summer my consultant made me
Category: Uncategorised

Replies: 2

Last updated: 7 March 2012
nigel on 4 March 2012

Category: Uncategorised

Replies: 2

Last updated: 5 March 2012

Imatinib, Dasatinib, Nilotinib, Ponatinib, Bosutinib -- Out of interest why do all the drugs end in inib ?
by nigel (Mar 5)

thanks for the reply nigel

by Richard42 (Mar 5)

Hi Nigel
"inib" is a sort of pharmaceutical shorthand for the type of drug these are. It's short for "inhibitor". You may also read of other kinds of modern drug that end in "mab", though not for

by nigel (Mar 4)

Imatinib, Dasatinib, Nilotinib, Ponatinib, Bosutinib -- Out of interest why do all the drugs end in inib ?

Just curiosity really, there must be a reason. Quite Sunday
Category: Uncategorised

Replies: 2

Last updated: 5 March 2012
jacqui from Col... on 28 February 2012

Category: Uncategorised

Replies: 14

Last updated: 14 March 2012

Dasatinib and Pleural effusion
by jacqui from Colchester (Mar 14)

Hi Sandy

I had my appointment on Tuesday and the Consultant has given me Imatinib.. The reason he explained is that they just want to keep me below 0.0 etc using imatinib. Then if

by tony morgan (Mar 11)

Hi Jacqueline sorry been so long in getting back daft as it my seem ,l go every three months to Wolverhampton haematology blood taken weighed sit down with my consultants assistant ,she says

by sandy craine (Mar 5)

Jacqui.... yes this might be the case. ...i.e if you received dasatinib 1st line because you were on the SPIRIT 2 trial this might get around the issue of IM as therapy in second line.
I think you

by sparkypcl (Mar 4)

Hi Jacqui, I do live in Ipswich having returned here in December 2009, after living in north Kent for 35 years. I acheived more or less zero in 2004, after my dose of Imatinib
Category: Uncategorised

Replies: 14

Last updated: 14 March 2012
Mistymoo on 28 February 2012

Category: Uncategorised

Replies: 3

Last updated: 29 February 2012

Dad passed away
by vickiep (Feb 29)

So sorry to hear this and think you've been very brave, especially in granting him the ability to die at home with you.
Like Alastair, I too am plagued with glancing at the message machine daily

by sandy craine (Feb 29)

I am so sorry to hear your news. Losing a parent is hard, but I am glad your Dad was able to be at home rather with his loved ones. It must be overwhelmingly sad for you, but thanks for

by Alastair C (Feb 29)

Hi Mistymoo, very sorry to hear of your loss.
Having lost both my parents in the last few years I initially struggled to deal with the new reality, and still find myself thinking "I must tell

by Mistymoo (Feb 28)

Hi All
I haven't posted a lot on this forum but have occassionally so thought I should let you know that as Dad's CML changed to AML he lost his fight on 10 February 2012. He tried
Category: Uncategorised

Replies: 3

Last updated: 29 February 2012
nigel on 28 February 2012

Category: Uncategorised

Replies: 3

Last updated: 12 March 2012

£500 raised for both CMLSupport Group and Leukaemia research
by chrissie (Mar 12)

for the successful fundraising. What a wonderful result. This group is a lifeline to many of us.
best wishes to all
Chrissie

by vickiep (Feb 29)

How wonderful! Well done Nigel!
Vickie
xx

by sandy craine (Feb 29)

Dear Nigel,
Thanks so much for the kind words and for raising funds for CMLSgroup. CML is still a potential killer and we cannot rest until we are sure we have access to the very best treatment for

by nigel (Feb 28)

Hi Sandy. Just to say we had a quiz night kindly organised though work on Friday gone and raised nearly £1000. We have split this £500 to research into Leukaemia and the balance of
Category: Uncategorised

Replies: 3

Last updated: 12 March 2012
ni2i on 27 February 2012

Category: Uncategorised

Replies: 12

Last updated: 7 March 2012

BMA
by ni2i (Mar 7)

Hi Andy
my last results from October were PCR 5.5% so i think im doing ok i was dx'd in Feb last year and was at 96% then so i think i'm doing good. I will get my next results end of April

by blueyes74 (Mar 7)

Hey,
Ah the old 'we need some more bone marrow' line. One time the lady said the sample was too small. The second piece was a good size, but then asked if she could take a third for

by ni2i (Mar 5)

Andy
Thank you for the response it made me chuckle, i remember prior to my first one they gave me a leaflet that said it was a relatively painless experience, defo lying it was excruciating and who

by blueyes74 (Mar 5)

Hey Naomii,
I was diagnosed 3 years ago this week and have had 4 BMA. The first time they told me to go upstairs for a little procedure that may hurt a little. OMG the lying "
Category: Uncategorised

Replies: 12

Last updated: 7 March 2012
hcy0da on 23 February 2012

Category: Uncategorised

Replies: 3

Last updated: 1 March 2012

1000 days milestone
by Jojo (Mar 1)

I was wondering how you were getting on - glad to hear you're doing so well. And yes, the support of family and friends can be invaluable. All the best to you jox

by sandy craine (Feb 24)

Well done on reaching this significant milestone. I have been bcr/abl 'undetectable' since March 2006- (RIC transplant in 2003 so a slower journey)- but it is a great feeling. Enjoy it.
Best

by hcy0da (Feb 23)

Now this is the time where I wish it had been a brain transplant ... that should have said undetectable bcr/abl for a year - I blame the drugs!

by hcy0da (Feb 23)

Today I am 1000 days post transplant. I've been bcr/abl for a year and my chimerism has been 100% for nearly a year.
Sometimes I can't believe how lucky I have been. A fantastic
Category: Uncategorised

Replies: 3

Last updated: 1 March 2012
pickleg on 22 February 2012

Category: Uncategorised

Replies: 1

Last updated: 22 February 2012

Anybody out there with Complex Varient CML?
by sandy craine (Feb 22)

Hi Karen,
I am not familiar with the effect the changes in the other chromosomes would have on your response to imatinib. Given that imatinib only targets bcr/abl (the oncogene that drives the PH

by pickleg (Feb 22)

Hi
I was diagnosed in september 2010 and I am far from reaching molecular remisssion. This is due to the fact that I have Complex Varient CML. Basically, chromosomes 6 and 8 are also in
Category: Uncategorised

Replies: 1

Last updated: 22 February 2012
Lyndsey on 19 February 2012

Category: Uncategorised

Replies: 1

Last updated: 20 February 2012

International scale
by sandy craine (Feb 20)

Hi Lynne,
Yes, HH use the IS. They also have one of the most sensitive PCR tests.

Sandy

by Lyndsey (Feb 19)

Hi

I was just wondering if anyone knew if the PCR results expressed by Hammersmith were actually using the international scale or not??

Thanks

Lynne
Category: Uncategorised

Replies: 1

Last updated: 20 February 2012
Lydia on 16 February 2012

Category: Uncategorised

Replies: 2

Last updated: 26 February 2012

Anyone have this problem?
by Lydia (Feb 26)

Thanks, Sandy, I knew if I was patient someone would come on site and offer a suggestion. We will check it out.

by sandy craine (Feb 25)

Hi Lydia, sounds like it could be shingles as the area you describe as effected is faily classic for shingles which affects the nerve endings. Is the rash like little raised bumps or blisters

by Lydia (Feb 16)

My husband has been on Glivec 400mg since 2007 and is PRCU. He has had an annoying skin problem for quite a long time. It usually starts each day about 4pm. Over time he has varied the
Category: Uncategorised

Replies: 2

Last updated: 26 February 2012
RodM on 15 February 2012

Category: Uncategorised

Replies: 16

Last updated: 7 March 2012

I'm Special!
by philcowtan (Mar 7)

Rod,
I was diagnosed in December 1993 and remember well the consultant explaining the options and the potential 5 year to live scenario - I'm very pleased to say that things have changed

by EmChops (Mar 4)

I just wanted to add 'hello' and hope you are doing well. I was dx march 2010 ( year anniversary next weekend :-(

I am on Nilotonib and doing well, I have mostly good days, the odd bad one,

by Jojo (Mar 1)

Hi and welcome to this exclusive club :) I am sure you will find lots of support and information here. I was dx in August 2010 and went on the Spirit 2 trial and like you was randomised to dasatinib

by tony morgan (Feb 28)

Hi rod all the best for the future you have the right attitude .I was diagnosed 14th December 2009 at Wolverhampton hospital ,picked up by a routaine blood test a complete fluke no symptoms, know
Category: Uncategorised

Replies: 16

Last updated: 7 March 2012
nigel on 14 February 2012

Category: Uncategorised

Replies: 5

Last updated: 23 February 2012

PCR results / Log reduction - Philadelphia positive at 3 months
by joflo (Feb 23)

Just seen this - great news Nigel. Jo ;)

by Lyndsey (Feb 15)

Hi just wanted to say well done on the reduction on ph+ cells. You must be pleased. I only had my initial diagnosis results expressed as 100% ph+ in the marrow and also a PCR result which was 69%

by Lyndsey (Feb 15)

Hi just wanted to say well done on the reduction on ph+ cells. You must be pleased. I only had my initial diagnosis results expressed as 100% ph+ in the marrow and also a PCR result which was 69%

by sandy craine (Feb 15)

Hi Nigel.... this is the result you need at this point in you journey... and translates into a 60% decrease of PH+ cells. The 'log reduction' is when you describe the drop by decimal points
Category: Uncategorised

Replies: 5

Last updated: 23 February 2012
sandy craine on 14 February 2012

Category: Uncategorised

Replies: 3

Last updated: 16 February 2012

Update on NICE MTA: 2nd Gen TKIs in 1st line, FAD meeting 8th Feb 2012
by marsy (Feb 16)

Sandy,
Many thanks to you and your colleagues for all the time and commitment in getting us this far. I agree with you entirely that it is favourable to keep engaged with NICE and their

by chrissie (Feb 15)

I can only add my thanks to Dennis's for the wonderful work carried out by you Sandy, David and the team. It has been a long hard fight for you all and I know I wouldn't have had any idea

by Dennis (Feb 14)

Thanks Sandy and everyone else who spent so much time pursuing this cause on behalf of the CML population. It must have been emotionally and physically draining for you people, but you should know

by sandy craine (Feb 14)

Summary:
NICE Final Appraisal Determination (FAD) meeting for the use of
dasatinib, nilotinib and standard dose imatinib for first line treatment of
CML.

The Appraisal Committee meeting
Category: Uncategorised

Replies: 3

Last updated: 16 February 2012
EmChops on 12 February 2012

Category: Uncategorised

Replies: 7

Last updated: 22 March 2012

Finding a new job with CML
by RodM (Mar 22)

Hi, Marilu
I was just diagnosed on 6th Feb, so in a very similar position. The good news is that the more you learn the better things look. I also started 2nd Generation TKI (Dasatinib) on

by marilu (Mar 22)

Will be starting 2nd generation drug next Tues, so much to absorb.

by Richard42 (Feb 21)

Hi Emma
I too changed jobs after being diagnosed. I was open with my new firm and they were in fact very understanding. As I have to take time out for appointments I couldn't really

by Janet (Feb 16)

Hi from another teacher. I'm sorry that you are facing this worry. Budgets! :-(
I'm just mentioning that Occupational Health services can be really good support for people with CML. I have
Category: Uncategorised

Replies: 7

Last updated: 22 March 2012
EmChops on 12 February 2012

Category: Uncategorised

Replies: 6

Last updated: 21 February 2012

Blurry vision - side effects or am I just tired/getting old?
by Olivia (Feb 21)

When I first needed reading glasses, at about the age you are now, the optician said "It's not your eyes getting worse, just that your arms are getting shorter...!" Cheered me up

by EmChops (Feb 20)

thanks for your messages.
I had an eye test today, my eyes are healthy but i am now very slightly longsighted so need glasses to read/go on laptop in the evenings or when tired.
the episode that

by paulyloyd (Feb 14)

I am also experiencing this one.

by sandy craine (Feb 13)

I agree that blurry vision is to do with the side effect of water retention and puffiness etc around the eye area (periorbital oedaema) affects vision throughout the day- and especially for close
Category: Uncategorised

Replies: 6

Last updated: 21 February 2012
Don Adkins on 7 February 2012

Category: Uncategorised

Replies: 1

Last updated: 7 February 2012

FDA Accepts NDA for Bosutinib
by sandy craine (Feb 7)

Hi Don,
thanks for this update on bosutinib. In the UK bosutinib has entered the NICE HTA process and is the process of being appraised for cost effectiveness as a 1st line therapy (Pfizer are

by Don Adkins (Feb 7)

Hi Everyone,
This was posted by Jerry Mayfield on his site this morning.
FDA Accepts NDA for Bosutinib
Pfizer Announces FDA Acceptance Of New Drug Application For Bosutinib For Patients With
Category: Uncategorised

Replies: 1

Last updated: 7 February 2012
mariansy on 6 February 2012

Category: Uncategorised

Replies: 2

Last updated: 6 February 2012

A Request
by mariansy (Feb 6)

Thanks Pennie
I'll call them tomorrow
ATB

Marian

by Pennie (Feb 6)

Hi Marian She is called Joanna, and is on the same phone number as Ibrahim was. If you phone the dept I am sure the people on the desk will give you her contact email.
ATB
Pennie

by mariansy (Feb 6)

Does anyone have the name and possibly teh email address for the curent CML Clinical nurse at Kings (London)
Many Thanks
Marian
Category: Uncategorised

Replies: 2

Last updated: 6 February 2012