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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
Lorraine Rollo on 6 December 2011

Category: Uncategorised

Replies: 3

Last updated: 7 December 2011

PCT funding
by Lorraine Rollo (Dec 7)

Hi Both
Thank you for your advice - has made me feel a bit better about things. The consultant was actually quite negative about things so it's good to hear some positivity from you both.
I'

by sandy craine (Dec 7)

Hi Lorraine, do not worry- I am surprised your consultant was so vague! He/she should know that imatinib at standard dose is first line therapy (should a transplant not be suitable) on NHS. This

by Richard42 (Dec 7)

Hi Lorraine
I would not worry - as Glivec is recommended by NICE for use on the NHS in your situation, I can see no reason why the PCT won't fund it. Indeed, I believe they are obliged to do so.

by Lorraine Rollo (Dec 6)

Hello All,
Been a while since I've posted on here but would benefit from some of your previous experience. After 11 years of my Glivec being funded by Novartis as part of the original drugs
Category: Uncategorised

Replies: 3

Last updated: 7 December 2011
ni2i on 6 December 2011

Category: Uncategorised

Replies: 8

Last updated: 9 December 2011

having a bad day
by ni2i (Dec 9)

Just wanted to say thanks, I feel loads better. Went to my G.P loads of use he was not, he seemed to panic, and tried to tell me I was depressed in which I made a joke so I think that changed his

by kate32 (Dec 8)

Hi Naomii
Hope you get an appointment with your GP and they are helpful. I seem to remember from other posts you are on a clinical trial, you could try talking to your drugs nurse and see

by sandy craine (Dec 8)

Hi Naomii,
sorry to hear you are still suffering from muscle cramps etc. How long have you been taking imatinib for now?
If you continue to suffer this level of pain then maybe you can consider that

by joflo (Dec 8)

Hi Naomi sorry to hear you were fed up the other day and glad you're feeling a bit better. You've helped to keep my spirits up when I was diagnosed so just wanted to offer my
Category: Uncategorised

Replies: 8

Last updated: 9 December 2011
Steven Davies on 6 December 2011

Category: Uncategorised

Replies: 2

Last updated: 7 December 2011

An Inspirational lady
by sandy craine (Dec 7)

Dear Jackie.... wishing you the best possible outcome with your upcoming SCT. I know you are in good hands with Prof. Craddock. He was my doctor when I was first diagnosed in '98 and was about

by jackieb38 (Dec 7)

As someone who is just about to undergo a BMT (on Monday, eek!) it really is good to hear of someone who is doing so well 25 years later. That really is amazing and makes me feel so much better!
I

by Steven Davies (Dec 6)

Hi
Today went for my fortnightly checkup. My PCR is 0.003 which is the best ever. Although im experiencing some side effects (not the usual ones) one which has not been seen before in the
Category: Uncategorised

Replies: 2

Last updated: 7 December 2011
Steven Davies on 5 December 2011

Category: Uncategorised

Replies: 2

Last updated: 6 December 2011

LBC tonight
by vickiep (Dec 6)

Really well done Steven...I was pretty angry when I heard the national news item and it reared up once again how very hard it is becoming to get vital drugs supported by NICE.
Thank you...

by sandy craine (Dec 6)

Well done Steven in keeping the subject of CML and the wider problem of access 'out there'.
see the home page or the top post of this page for the CMLSg press statement on the NICE ACD for

by Steven Davies (Dec 5)

Hi
Just had about 5 minutes of airtime on James Wales’s radio program on LBC tonight.
They were talking about the suggestion to sell medical records to private companies to enable those
Category: Uncategorised

Replies: 2

Last updated: 6 December 2011
Kate on 2 December 2011

Category: Uncategorised

Replies: 4

Last updated: 5 December 2011

Rising PCR and Ph chromosome, worried
by sandy craine (Dec 5)

Hi Kate,
MMR is defined as either a BCR/Abl ratio of less than 0.10% or a 3 log reduction from the mean PH+ level of 30 patients enrolled in the IRIS trial- this was then used as the baseline.

by Kate (Dec 4)

Hi Sandy,

Thanks so much for your response it has put my mind at ease. I will

ask for feedback too. I have a question about molecular response. Is a Major Molecular response a 3 log

by Kate (Dec 4)

Hi Sandy,

Thanks so much for your response it has put my mind at ease. I will

ask for feedback too. I have a question about molecular response. Is a Major Molecular response a 3 log

by sandy craine (Dec 3)

Hi Kate,
It might be that your biopsy hit a 'pocket' of ph+ cells - this happened to me-given that only 35 cells were tested. so this might be an explanation for the disparity between the
Category: Uncategorised

Replies: 4

Last updated: 5 December 2011
sandy craine on 30 November 2011

Category: Uncategorised

Replies: 4

Last updated: 8 December 2011

CMLSg's Campaigning Activity 2011
by Belinda Whitting (Dec 8)

I agree absolutely no price should be put on life, especially a life that isn't self inflicted! My husband has done nothing wrong to get this disease.

by technician69 (Dec 8)

Had it not been for Imatinib and now Dasatinib Becky (my daughter) would probably not be here now. She has a normal life and has just givin birth to a son, something that I thought I would

by sandy craine (Dec 5)

Dear Jackie... I absolutely agree with you- and you are living proof that dasatinib works in BC patients.
You will be able to comment directly on the NICE website when they publish the draft ACD

by jackieb38 (Dec 4)

I think Dasatinib is an amazing drug and it, and other TKI's should be available to all who need them. How can a price be put on life!!
As you all know it has quite literally saved my life as I
Category: Uncategorised

Replies: 4

Last updated: 8 December 2011
sandy craine on 30 November 2011

Category: Uncategorised

Replies: 2

Last updated: 1 December 2011

NICE ACD-draft appraisal nilotinib/dasatinib/imatinib in first line
by sandy craine (Dec 1)

Hi Alistair, I agree that this is a NICE trend (negative guidance) as their new drug for malignant melanoma had a negative a few weeks ago. PAS are obviously the way in for pharma to sell their

by Alastair C (Nov 30)

Interesting to see another NICE TA being reported (for Ranibizumab for the treatment of diabetic macular oedema) where it would appear at a quick glance that the guidance is not to recommend use for

by sandy craine (Nov 30)

FYI:
NICE will publish the draft appraisal consultation document (ACD) : dasatinib, nilotinib and standard dose imatinib for 1st line use in CML, on their website on Tuesday 6TH December.
CMLSg have
Category: Uncategorised

Replies: 2

Last updated: 1 December 2011