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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
sandy craine on 22 December 2011

Category: Uncategorised

Replies: 2

Last updated: 4 January 2012

2nd phase of CML Survey
by sandy craine (Jan 4)

Can the following people who have applied to take part in the survey please contact Emma on emma.seka@macksense.co.uK. Emma has informed me that she has not got the contact details

by nigel (Dec 31)

Hi all, i have just received this email as i completed the form yesterday, self explanitory.
Nigel

Thank you volunteering to take part in the second phase of our survey on Chronic Myeloid

by sandy craine (Dec 22)

Update on 2nd part of CML Survey.
A healthcare market research agency is conducting a survey on the treatment of Chronic Myeloid Leukemia (CML) with patients based in the UK and are looking for
Category: Uncategorised

Replies: 2

Last updated: 4 January 2012
Mistymoo on 22 December 2011

Category: Uncategorised

Replies: 2

Last updated: 22 December 2011

Acute Phase
by Mistymoo (Dec 22)

Yes he was treated by Prof. Tessa Holyoake. She had to push very hard to get him on the trial as all other drugs were not effective. He was treated for less than 6 months on the trial

by sandy craine (Dec 22)

I am sorry to hear your dad did not respond to his therapy. Another member of this forum was recently told that her disease had progressed and a transplant was planned- however even high dose

by Mistymoo (Dec 22)

I have not posted a lot but Dad has had CML for over 4 years. He started on a trial drug - not sure of name - with the Beatson clinic in Glasgow. This was in July however it has not been
Category: Uncategorised

Replies: 2

Last updated: 22 December 2011
chrissbb on 21 December 2011

Category: Uncategorised

Replies: 1

Last updated: 1 February 2012

How your PCR test is carried out
by chrissbb (Feb 1)

Hi Everyone,
Just a reminder that this meeting is this Monday coming.
If anyone is in distance to join us, we look forward to seeing you.
Coffee/Tea and biscuits free to all.

by chrissbb (Dec 21)

Hi Everyone,
First of all i hope your all keeping well, and getting ready for Christmas !
On Monday the 6th of Feb 2012. We are holding another Yorkshire CML Support group meeting, at this
Category: Uncategorised

Replies: 1

Last updated: 1 February 2012
Richard on 21 December 2011

Category: Uncategorised

Replies: 2

Last updated: 5 January 2012

Symptoms of CML
by Richard (Jan 5)

Hi Sandy
Sorry for the delay in replying. I have a small excuse, in that I have spent a little while in hospitals in the last month, although nothing to do with CML. My last bone marrow sample

by sandy craine (Dec 21)

Hi Richard,
You say your blood has been 'normal' for several years, but do you know the results of your cytogenetic tests or pcr results?
Your symptoms- especially the swollen spleen and

by Richard (Dec 21)

I was first diagnosed with CML in 2004 and I have been taking imatinib ever since. My blood has been "normal" for several years. Recently, however, I have been experience the symptoms of
Category: Uncategorised

Replies: 2

Last updated: 5 January 2012
belfez on 21 December 2011

Category: Uncategorised

Replies: 1

Last updated: 21 December 2011

Cell Harvesting in Newly Diagnosed
by sandy craine (Dec 21)

Cell harvesting for autologous transplant used to be offered to CML patients who were in chronic phase at diagnosis. To my knowledge this is now not offered routinely because the efficacy of TKI

by belfez (Dec 21)

Hello. Just wondering what the current situation is U.K. wide.
Is this still being done for use in potential auto transplant?
Category: Uncategorised

Replies: 1

Last updated: 21 December 2011
jacqui from Col... on 18 December 2011

Category: Uncategorised

Replies: 8

Last updated: 19 December 2011

Pleural effusion
by jacqui from Colchester (Dec 19)

Merry christmas to you - yes please let me know how it goes with you too x

by karen (Dec 18)

You should make the most of that! Have a glass (or 2!) for me won't you! Let me know how you get on with your results and have a (very) Merry Christmas

K

by jacqui from Colchester (Dec 18)

Oh Karena that must of been very scary initially. I am stressed just waiting to get some sort of answers , it must be doubley worse for you. Hope they get things sorted soon. x

by karen (Dec 18)

Hello

The answer is not really, they were only taking small amounts to check the fluid. Unfortunately the first time the fluid picked up some contamination in the lab and they thought I had
Category: Uncategorised

Replies: 8

Last updated: 19 December 2011
Belinda Whitting on 16 December 2011

Category: Uncategorised

Replies: 7

Last updated: 17 December 2011

Rising counts
by Belinda Whitting (Dec 17)

Thank you Mandy, just can't help worrying, especially when is heamotologist seems concerned also. Good news about your mum.

by Belinda Whitting (Dec 17)

Sorry think I was meant to add another 0. 0.079?

by Belinda Whitting (Dec 17)

Hi sandy, his bcr abl was 0.79 which his haematologist said was still negliable, as he was in mmr before, it's now going up, as the reading shows, which is why they are now checking it every 4weeks

by manadan71 (Dec 16)

Hi Belinda,
Not sure if this helps, but my mum had rising PCR numbers this year after being in the zero club for many years (dx 2005). Numbers went up to 0.012, but then the latest count was zero
Category: Uncategorised

Replies: 7

Last updated: 17 December 2011
chrissie on 16 December 2011

Category: Uncategorised

Replies: 20

Last updated: 14 December 2012

WIN trial -DNA vaccine +WT1
by chrissie (Dec 14)

Hi Lucky
Yep, I signed onto the WIN trial back in March I think, but as I don't have the required HLA2 gene and therefore can't have the vaccine, I'm in the control group which means I trot along to

by lucky4lock (Dec 13)

Hi Chrissie,
Can you please update on the DNA Vaccine.How it went for you.
Thanks,

Lucky

by chrissie (Apr 3)

Just wondering how the trial is going for you, Bryan ?

best

Chrissie

by JeffMowatt (Mar 15)

Sandy, Yes I mentioned the negative mutation test above. I appear to have just stopped responding.
I'd be very happy to wake using an alarm, I don't need it since I'm usually awake
Category: Uncategorised

Replies: 20

Last updated: 14 December 2012
cousineg on 13 December 2011

Category: Uncategorised

Replies: 1

Last updated: 14 December 2011

Dr. Susan Branford and CML
by Anonymous (Dec 14)

Just watched the videos very informative, recommend, particularly if fairly recently diagnosed as it explains the blood and bone marrow tests well, which are for what and the goals we are

by cousineg (Dec 13)

See Dr. Susan Branford
Category: Uncategorised

Replies: 1

Last updated: 14 December 2011
cmlblogger on 12 December 2011

Category: Uncategorised

Replies: 3

Last updated: 14 December 2011

5 year anniversary
by liz (Dec 14)

Well done, It's a good place to be.
This month I am 4 yrs undetected and 31st march will be my 5 year anniversary.
I can't believe how quick it has gone.
Wishing you a happy healthy

by sandy craine (Dec 13)

Dear Rob,
We have December in common as the month of diagnosis. Mine was the 4th- and I must thank you for reminding me. Because of your post I have just realised that I missed remembering that

by Lyndsey (Dec 12)

Hi just wanted to congratulate you on your 5 year anniversary. For me that feels forever I'm only at the start of this journey at only 5 months. Great to see people posting their results and

by cmlblogger (Dec 12)

Cannot really believe that it was 5 years ago to the day that my GP told me had CML. So much as changed, so much has stayed the same.
Just wanted to thank everyone on here for there
Category: Uncategorised

Replies: 3

Last updated: 14 December 2011
nigel on 8 December 2011

Category: Uncategorised

Replies: 3

Last updated: 11 December 2011

Travel Holiday Insurance
by sandy craine (Dec 11)

Thanks Nigel,
I have added this to the list on FAQ page- Travel
Best wishes,
Sandy

by Anonymous (Dec 11)

Hi Jo, blimey what a year or two you have had, you are through it though so great, glad to hear moms well and a baby, only a few years older with kids so remember it well. Tiring but great fun.
No

by joflo (Dec 10)

Hi Nigel
That's really useful to know. We're also looking to book a holiday around Spring next year ( can't wait as haven't had one for ages due to having an eventful couple of

by nigel (Dec 8)

My family are off on holiday at Easter out of Europe, and so I have been trying to get holiday insurance to cover recent CML diagnosis (two months) tried the usual companies as well as
Category: Uncategorised

Replies: 3

Last updated: 11 December 2011
sandy craine on 8 December 2011

Category: Uncategorised

Replies: 1

Last updated: 9 December 2011

Vitamin/mineral supplements
by david_a (Dec 9)

Hi Sandy,
Thanks to this post I have now purchased some Vitamin B tablets.
Regards
David

by sandy craine (Dec 8)

B Vitamins May Provide Natural Stress Relief

Recent studies have found links between high levels of stress and an increased risk of heart disease, depression and anxiety.
B
Category: Uncategorised

Replies: 1

Last updated: 9 December 2011
nigel on 7 December 2011

Category: Uncategorised

Replies: 2

Last updated: 7 December 2011

PCR tests – is this via a bone marrow sample or blood ?
by sandy craine (Dec 7)

Pcr tests the molecular level of disease....i.e when you can no longer detect PH+ cells by FISH or cytogenetics then they will switch to doing pcr testing from you peripheral blood. You shoulc not

by bobosbo (Dec 7)

Hello Nigel,
PCR tests are normally only carried out once your bcr/abl level is below 30/35%, & is done from blood taken at one of your regular blood checks. Until your bcr/abl falls to this

by nigel (Dec 7)

Hi all, only 2 months in since Dx so unsure on the next stage, read quite a lot however a question please as seem to have seen conflicting info. I am unsure how a PCR test is done. I thought it was
Category: Uncategorised

Replies: 2

Last updated: 7 December 2011