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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
chrissie on 27 January 2012

Category: Uncategorised

Replies: 3

Last updated: 5 February 2012

WIN trial
by chrissie (Feb 5)

Hi Bryan
Thought of you on the 4th Jan. Pleased to hear the vaccination programme is going OK and will keep my fingers crossed for you that they are having the desired effect. I guess you'll get

by sandy craine (Feb 3)

Thanks Bryan, good to hear that the actual vaccine is not too painfull an experience. When reading the protocol and the description of how it was actually delivered it sounded a bit scary;o)
Good

by bc (Feb 2)

Just a quick line on the update. I've just had my 3rd vaccine this morning. Nothing particularly interesting to report asuch - I think it is a little early to draw any conclusions with respect

by chrissie (Jan 27)

I am wondering how Bryan is getting in with the trial treatment? I am waiting for the result of my blood test to see if I have the necessary gene. Should know sometime next week I hope.
Hope
Category: Uncategorised

Replies: 3

Last updated: 5 February 2012
Lyndsey on 24 January 2012

Category: Uncategorised

Replies: 5

Last updated: 25 January 2012

6 month PCR
by Lyndsey (Jan 25)

Thanks everyone for your kind wishes and please let us know how you get on with your PCR results. Hope your wait is not too much longer!

Lynne x

by EmChops (Jan 25)

Really good news Lynne well done!

Good luck Naomi and Nigel too!

Emma x

by sandy craine (Jan 25)

Well done Lynne and I am sure your results will give others waiting for pcr results some comfort.
Your 3 and 6 month results are very good and are both well within the guidelines for optimal

by joflo (Jan 25)

That's brilliant! - also well done Emma and good luck to Naomi and Nigel for the 12 month and 3 month one. - Jo :) x
Category: Uncategorised

Replies: 5

Last updated: 25 January 2012
sandy craine on 11 February 2012

Category: Uncategorised

Replies: 1

Last updated: 12 February 2012

Alzheimer's Research- Off topic but important
by EmChops (Feb 12)

That is really good news. X

by sandy craine (Feb 11)

Although I do not usually go off topic, I felt it important to post this news here because Alzheimer's is an increasing problem and there are people out there that are currently struggling
Category: Uncategorised

Replies: 1

Last updated: 12 February 2012
Ali Loram on 22 January 2012

Category: Uncategorised

Replies: 7

Last updated: 29 January 2012

Advice please, Glivec or interferon?
by Dennis (Jan 29)

I think you have made the right choice there, Ali. Good luck with it. Hope it works well for you.

by Pennie (Jan 28)

Hi Ali I am doing OK on nilotinib, it suits me better than glvec or dasatinib, but as with all TKIs has side effects!!
I found the sickness with glivec eased a bit if I kept off all

by Ali Loram (Jan 28)

Hi & many thanks for your replies. My consultant describe the side effects just as you have Dennis, although it did you well at the time.
We have decided, for now to try a low dose of Glivec for

by Dennis (Jan 24)

Hi Ali,
Before the Glivec era, after a failed autologous stem cell transplant, I was on Interferon Alpha for 8 years. The reported down side of Interferon was the susceptibility of some patients to
Category: Uncategorised

Replies: 7

Last updated: 29 January 2012
sandy craine on 21 January 2012

Category: Uncategorised

Replies: 2

Last updated: 22 January 2012

R&B Singer Etta James had CML
by sandy craine (Jan 22)

Hi Liz,
yes.. you are right, currently the consensus is that TKIs do not cure (but in some cases- eg those who are part of the responding cohorts in the stopping imatinib (STIM) trials they might

by liz (Jan 21)

Hi Sandy,
I understand that CML cannot be cured with TKI's but controlled, but I did think it was curable with a BMT? Do you think her doctor meant her personal Leukemia couldn't be cure,

by sandy craine (Jan 21)

Etta James- legendary R&B singer, died this week. She was 73. I have always been a big fan, and I was saddened by this news- she had just released a new album.
Today I heard that she had
Category: Uncategorised

Replies: 2

Last updated: 22 January 2012
EmChops on 20 January 2012

Category: Uncategorised

Replies: 10

Last updated: 4 February 2012

9month PCR test result back and big hooray!!!
by LizzieD (Feb 4)

Sorry for the late comment but I have been very busy, but well done Emma. Keep it up. Glad to hear things are getting better. Lets hope your PCR result next time will be lower again.
Sue

by skiinglaketahoe (Jan 26)

Hi Emma
I was at the meeting at HH and heard your questions and dilemma, I just wanted to say that I am so glad that you just had such excellent results. Long may they continue.

regards
Susan

by sandy craine (Jan 21)

Dear Emma,
good to read your news and read about your big smile too. Well done and congratulations. Keep downing those drugs and I am sure you will see another zero soon. 3 log reduction -0.003 is

by liz (Jan 20)

Congratulations, really happy for you. x
Category: Uncategorised

Replies: 10

Last updated: 4 February 2012
ni2i on 18 January 2012

Category: Uncategorised

Replies: 2

Last updated: 25 January 2012

what to expect
by sandy craine (Jan 25)

I have had some discussions about what you should expect to see at the 3 months pcr.... there is now some confusion regarding the conversions to the International Scale (now used at the HH lab

by sandy craine (Jan 21)

Hi Naomii, the following ELNet guidlines outline the 'optimal' response at 3, 6 and 12 months.
The current (2009) ELNet guidelines indicate an optimal response (to 400mg

by ni2i (Jan 18)

Hi All
Hope you are all well.
I am coming up to my first anniversary of CML and have the annual tests coming up. i will be having my BMB shortly just to say in advance OUCH. although i am lucky as i
Category: Uncategorised

Replies: 2

Last updated: 25 January 2012
LizzieD on 16 January 2012

Category: Uncategorised

Replies: 2

Last updated: 19 January 2012

Skin Rash
by Swede (Jan 19)

Hi Sue
I also had a bad skin rash on Glivec although it started almost immediately and I was on steroids to keep it at bay. Soon as I stopped, it came back, although I did manage to get the dose

by sandy craine (Jan 17)

Hi Sue, I agree that this late onset of what sounds like quite a severely uncomfortable rash is puzzling... but I am sure you are not alone. Given you have already tried all the topical creams which

by LizzieD (Jan 16)

Hi Everyone
I look at this site regularily, but have not actually posted on here before. I was diagnosed with CML in July 2009 and have been on Glivec since then. The side effects
Category: Uncategorised

Replies: 2

Last updated: 19 January 2012
Tenny on 13 January 2012

Category: Uncategorised

Replies: 1

Last updated: 14 January 2012

Curious if anyone has come across this...
by sandy craine (Jan 14)

Hi Tenny,
first I would like to welcome to this forum. I assume you are based in the US and that your mother is treated there?
If so as a first step I suggest that you take a look at the National

by Tenny (Jan 13)

Hello all, my mom was diagnosed with CML on April 22, 2010. I know we havent hit the one year mark just yet, but everything has been going well her white blood cell counts were coming down the
Category: Uncategorised

Replies: 1

Last updated: 14 January 2012
sandy craine on 13 January 2012

Category: Uncategorised

Replies: 1

Last updated: 16 January 2012

NICE: APPEAL REJECTED ON ALL 3 GROUNDS
by sandy craine (Jan 16)

CML Support Group: Response to the Appeal Panel judgement is now published on the home page.

by sandy craine (Jan 13)

Unfortunately the Appeal Panel have rejected the CMLS Group grounds as we submitted for appeal against the NICE FAD which does not recommend dasatinib (or HD imatinib) as an option for 2nd line
Category: Uncategorised

Replies: 1

Last updated: 16 January 2012
sti571 on 11 January 2012

Category: Uncategorised

Replies: 2

Last updated: 12 January 2012

Hello
by suzhope (Jan 12)

Hi John, it's Suzanne Dreger, though I am Suzanne Hope these days. I was deeply saddened as well to hear of Zavie's death. He was a good man who helped many people over the years

by sandy craine (Jan 11)

Hi John,
yes there are plenty of people still around from those early years.... including me. Regarding the Zero Club, I heard today that there might be a way of preserving this- but that will

by sti571 (Jan 11)

Hello,
My name is John Calderwood. I believe it was this site I spent the better part of my days back in 2000-2003. I was diagnosed with CML June 2000 and went on a trial for STI 571 (gleevec). Some
Category: Uncategorised

Replies: 2

Last updated: 12 January 2012
nigel on 10 January 2012

Category: Uncategorised

Replies: 6

Last updated: 12 January 2012

Ist bome marrow test since Dx at 3 months on Glivec
by Olivia (Jan 12)

I have a PCR every 3 months, and get the results on my next visit - so I wait 3 months for the result. I don't know if it would be better to get the result earlier, but at least when

by joflo (Jan 12)

Yes will be in touch Nigel- fingers crossed for a good start this year hey . Thanks also to Sandy for clarifying the 10% thing - think being a newbie I'm still working

by nigel (Jan 12)

Hi just to say thank you for the info Sandy and Naomii, fingures crossed for our tests Jo and any other newbi, were you at Hammersmith last week for the meeting ? Let me know how you get on Jo,

by ni2i (Jan 11)

Hi guys
i'm not sure on what the guidelines say but, i have a bmb every 12 months only ever had 1 at dx due my 2nd end of the month. I have a pcr test done every time i go to the centre which is
Category: Uncategorised

Replies: 6

Last updated: 12 January 2012
Steven Davies on 10 January 2012

Category: Uncategorised

Replies: 8

Last updated: 27 January 2012

PCRU .0.000 after 7.5 years a nice start for 2012
by mariansy (Jan 27)

Congratulations.

I've been on Glivec for 6+ years now and my best result to date is 0.022, just had a PCR draw done so fingers crossed. So refreshing to hear that some of us just take

by Belinda Whitting (Jan 11)

Well done, good news.xx

by Steven Davies (Jan 11)

Thank you for your kind messages.Carol and I are still on cloud 9.
Steven

by Pennie (Jan 10)

Huge congrats Steve from Billl and I. Its wonderful to hear you have got to the zero at last. It must be a fantastic felling. So pleased for you.
Me next please!!! Here I am
Category: Uncategorised

Replies: 8

Last updated: 27 January 2012