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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
sandy craine on 10 January 2012

Category: Uncategorised

Replies: 6

Last updated: 11 January 2012

Zavie
by Belinda Whitting (Jan 11)

Im so sorry to hear about this sad news. My thoughts are with his wife & family.xx

by david_a (Jan 10)

Zavie will be missed.
His zero club was an inspiration to me when I needed it the most and no doubt to many others.
David
#1375

by Jayne (Jan 10)

I was so sorry to hear about Zavie. He was a wonderful, charismatic man who helped me enormously when my Son Aaron was diagnosed 8 years ago. I felt much comfort and joy when he gave Aaron his zero

by Basil from RSA (Jan 10)

To all the family of Zavie, I sincerely wish you long life. Zavie was a person that I communicated with so many times on Skype that it felt like we were long time buddies. Zavie was an inspiration
Category: Uncategorised

Replies: 6

Last updated: 11 January 2012
sandy craine on 15 March 2012

Category: Uncategorised

Replies: 11

Last updated: 31 March 2012

nilotinib and fasting- new discussion thread from below.
by JeffMowatt (Mar 31)

I can see what you mean Ash. After less than two weeks on nilotinib I'm into a routing of eating better during the day, in anticipation of the fast and like you, usually take it between 5 and 6 each

by sandy craine (Mar 26)

Hi Ash,
thanks for your insight into how fasting helps you. It is really interesting that you have this 'spin' on this issue and one that might help many people to take a positive rather

by newlondon (Mar 23)

Hi. I fully understand the issues with fasting but I have a spin on this. I have been on Nilotinib for a year now which was prescribed directly after diagnosis (on a trial). One of the reasons

by JeffMowatt (Mar 20)

Hi Ali, A head to foot rash was one of my sife effects with imatinib. It was short lived because having experienced it a decade earlier, long before CML I took it to be a recurrence of the psoriasis
Category: Uncategorised

Replies: 11

Last updated: 31 March 2012
ericavebury on 3 January 2012

Category: Uncategorised

Replies: 1

Last updated: 4 January 2012

C-MPL W515
by sandy craine (Jan 4)

Welcome Eric,
I understand from your blog that you have a recently been diagnosed with a rather complicated/rare presentation of a myeloproliferative neoplasm/myelodysplasia. You might find the

by ericavebury (Jan 3)

I'm hoping to establish contact with others having this somatic mutation and their carers. If anybody falls into that category, would they please join the FaceBook Group with this title.
Category: Uncategorised

Replies: 1

Last updated: 4 January 2012
Basil from RSA on 31 December 2011

Category: Uncategorised

Replies: 2

Last updated: 4 January 2012

2012
by ADJL (Jan 4)

Just to wish everyone a healthy and productive year. Lovely words from you, Basil, and Sandy- your story and point of view continues to be a source of inspiration. Thanks both...
ADJL

by sandy craine (Jan 4)

Dear Basil,
Thank you for your thoughtful post and for the good wishes. The New Year is for many of us a time of reflection and (re) assessment. I have been looking over our collection of photo'

by Basil from RSA (Dec 31)

As wel all wait out the arrival of 2012, mixed thoughts and emotions fill my head.
I have been so fortunate and blessed on my journey with CML, but others have not and for those I will send up
Category: Uncategorised

Replies: 2

Last updated: 4 January 2012
Stuart Johnston on 31 December 2011

Category: Uncategorised

Replies: 4

Last updated: 2 January 2012

Cml and Other cancer.
by Stuart Johnston (Jan 2)

Hi Barry

I am glad you are doing well.and thank you for your words of reassurance.

The response from the oncologist really demonstrates how good imatanib is,

The fact that they are

by Barryphilipallsop (Jan 2)

Hi Stuart
I was diagnosed with CML in December 2004. My Pcr readings have been low 0.002,0.005 etc for many years
and have been doing really well on Imatanib for a 67 year old!
However my last three

by Alastair C (Jan 2)

Hi Stuart
Sorry to hear you've joined me in combining CML and testicular cancer. Mine came the other way round - I was diagnosed with a mixed seminoma/teratoma in 1988, and although the

by joflo (Dec 31)

Hi Stuart
Just wanted to wish you and everyone here all the best for the new year ahead.Yourself and others on this site have been a great help to me when I was first dx in Oct..
You have a
Category: Uncategorised

Replies: 4

Last updated: 2 January 2012
Lyndsey on 27 December 2011

Category: Uncategorised

Replies: 7

Last updated: 29 December 2011

Chest heaviness
by jacqui from Colchester (Dec 29)

Hope It sorts itself out soon , keep well jacqui/x

by Lyndsey (Dec 29)

Thanks again jackie. I did manage to get an appointment today at 3pm. So my chest is clear and no signs of fluid. However, he did noticed I looked very pale so he has taken blood. Get results

by jacqui from Colchester (Dec 28)

Hi Lynne
I was breathless although I only noticed it when walking ie shopping at first, then it got to getting breathless when talking in long sentences . I had had a slight cold so put

by Lyndsey (Dec 28)

Thanks Pennie I will definitely get it checked out tomorrow.
Category: Uncategorised

Replies: 7

Last updated: 29 December 2011
sandy craine on 23 December 2011

Category: Uncategorised

Replies: 17

Last updated: 5 January 2012

Jackie
by EmChops (Jan 5)

I am so sorry to read about Jackie, Beth and Alistair.
My thoughts are with their families.
It is a sharp reminder that we must fight on, you just don't know what is around the corner.

by technician69 (Jan 3)

RIP to both people, Didnt know Beth but often chatted to Jackie on Facebook. She was a wonderful ladyl!! xxxx

by jacqui from Colchester (Dec 28)

Such sad news, my heart goes out to all the families
Jackie was such an inspiring and positive person, she certainly touched my heart - God Bless
I also share with you all, further sad news -

by Belinda Whitting (Dec 27)

Dear Moira, I'm so sorry to hear your sad news.xx
Category: Uncategorised

Replies: 17

Last updated: 5 January 2012