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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
sandy craine on 5 February 2012

Category: Uncategorised

Replies: 2

Last updated: 12 February 2012

NICE Appraisal Committee meeting- 2nd Generation TKIs for 1st line
by EmChops (Feb 12)

I agree with Steven, thank you for representing us.

by Steven Davies (Feb 6)

Good luck for Wednesday. I know that you can't speak but even your presence will be good.
Steven

by sandy craine (Feb 5)

David and I will be attending the NICE appraisal committee meeting in Manchester on Wednesday. The meeting will consider the comments on the recent ACD (published Dec 2011) for nilotinib and
Category: Uncategorised

Replies: 2

Last updated: 12 February 2012
sandy craine on 3 February 2012

Category: Uncategorised

Replies: 3

Last updated: 18 March 2012

Pulmonary Arterial Hypertension- PAH
by alangent (Mar 18)

Sandy
Thanks for the speedy response. I may have used the term PAH wrongly so I've switched to what I experience as the title. I have no medical training except first aid but as retired chemical

by sandy craine (Mar 18)

I am not sure about CML 'causing' PAH. I don't think so because if it was a causal factor then I think this condition (PAH) would be much more common in the CML population.
I think you

by alangent (Mar 18)

I was diagnosed with CML in June 2011. For several months before I was experiencing breathlessness on exertion and this continues somewhat worsened. . I am on the Spirit II trial taking 100mg

by sandy craine (Feb 3)

FDA notified healthcare professionals that Sprycel (dasatinib) may increase the risk of a rare but serious condition in which there is abnormally high blood pressure in the arteries of the lungs (
Category: Uncategorised

Replies: 3

Last updated: 18 March 2012
oasis_black on 2 February 2012

Category: Uncategorised

Replies: 1

Last updated: 2 February 2012

Possible CML in teenager
by sandy craine (Feb 2)

Hi,
firstly let me say that I totally understand your panic. It is hard to accept that our children might be seriously ill. I hope that the tests your hospital is doing on your son's blood

by oasis_black (Feb 2)

Hi,
I have a couple of questions. My 14 year old son is in the hospital for testing. Today I was told that it is possible that he has a chronic form of leukemia. I had so much info thrown at me that
Category: Uncategorised

Replies: 1

Last updated: 2 February 2012
Olivia on 1 February 2012

Category: Uncategorised

Replies: 4

Last updated: 4 February 2012

Flaky fingernails
by LizzieD (Feb 4)

Hi I have been on Glivec for over 2 years and have had flaky and splitting nails. I have found Pro-strong nail strengthener and moisturiser, and this has done the trick. My nails are a lot

by Olivia (Feb 3)

Thanks, both of you. It helps, somehow, to know I'm not the only one who has this problem - not that it solves anything. At least we women can use varnish without drawing odd looks!

by EmChops (Feb 2)

I share your frustration. My fingernails are in a terrible state, flaky and break very easily. I just keep them short and paint them every few days to distract me from how awful they look! If I ever

by cmlblogger (Feb 1)

hi olivia - i had very thin finger nails whilst on gleevec, that regualrly split. However since moving to dasatanib they have regained some of there former thickness
I put it down to the drugs
Category: Uncategorised

Replies: 4

Last updated: 4 February 2012
david barnes on 31 January 2012

Category: Uncategorised

Replies: 3

Last updated: 1 February 2012

Dastanib (sprycel}
by cmlblogger (Feb 1)

for me it has been the opposite I had trouble exercising on imatanib for more than 20mins, but since moving to dastanib I have been able to exercise harder and for longer...(am 42 and for the first

by brassman (Feb 1)

Hi David,

I've been on Dasatinib since June 2010 and I'm often short of breath when exercising. I mentioned it to my Haemotologist and she first checked for pleural effusion with an X

by sandy craine (Jan 31)

Hi David,
might be an idea to ask for a check on your lung function. one of the more serious though less common side effects of dasatinib is pleural effusion. If you are worried, best get that

by david barnes (Jan 31)

Hi

just wondered if anyone has had the same side affect as me .I was on glevec until aug last year, now on sprycel and have noticed when i am training sometimes get short of breath.
Category: Uncategorised

Replies: 3

Last updated: 1 February 2012
Lizzy on 31 January 2012

Category: Uncategorised

Replies: 1

Last updated: 31 January 2012

pcr result
by sandy craine (Jan 31)

Hi Lizzie,
I can understand why you would worry about the option of a transplant. I would say that a drop from 7% (pcr) to 1.59% in 5 months on Tasigna is pretty good considering. I am not sure

by Lizzy (Jan 31)

Hi all

Although this is my first post, I have been following this site for a couple of years and through it I have found great strength. At this moment I feel I need some help.
Category: Uncategorised

Replies: 1

Last updated: 31 January 2012
cmlblogger on 30 January 2012

Category: Uncategorised

Replies: 2

Last updated: 31 January 2012

CML and Fifth Disease/”Slapped Cheek” Syndrome
by cmlblogger (Jan 31)

thanks Vickie
kept him in as only does 2 days a weke and probably too late now...

rob

by vickiep (Jan 31)

Hi Rob, can't help you with implications for us CML-ers, but I can tell you that the school I work in prefers children to stay out of school until their symptoms have gone.
That's all!

by cmlblogger (Jan 30)

THere is a case of fith disease in my youngests nursery and was wondering about any problems for CML suffererrs. Have had a quick trawl around the web and there doesn't seem to be anything
Category: Uncategorised

Replies: 2

Last updated: 31 January 2012