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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
tartancaddy on 29 November 2011

Category: Uncategorised

Replies: 6

Last updated: 1 December 2011

back to fitness!!
by david_a (Dec 1)

Hi all,
I run 10km apx 3 to 4 times a week, but this has reduced recently due to winter weather and colds!
I can do 10km in apx 50 mins.
Im 35 and started around 3 running around months ago.
I was

by marsy (Dec 1)

Hi Fellow CML'ers,
I just want to re-iterate Sandy's point about keeping fit and hope you don't mind me sharing my experience with taking TKI;s
Just prior to beng diagnosed in

by cmlblogger (Nov 30)

Sandy - sounds like a plan :)
and BTW - my lunch time run in the winer sunshine was great
9.3Kms at just under 11KM/h
http://runkeeper.com/user/robmargel/activity/61601801
Rob

by sandy craine (Nov 30)

Hi Rob... good to hear the change to dasatinib has helped towards you acheiving a better level of fitness. Walking/running/jogging has a positive effect on quality of life- especially when taking
Category: Uncategorised

Replies: 6

Last updated: 1 December 2011
sandy craine on 29 November 2011

Category: Uncategorised

Replies: 1

Last updated: 29 November 2011

Gareth's message reposted from below
by sandy craine (Nov 29)

Dear Gareth... your GP is right to be angry. You are not getting the specialist care you need. He/she should refer you to a more specialist centre who know about the side effect profile of imatinib

by sandy craine (Nov 29)

submitted by Gareth84 on Mon, 28/11/2011 - 18:53.
Hello everybody. I've just been reading thru these posts and thought I would tell my story and see if anybody has any advice
Category: Uncategorised

Replies: 1

Last updated: 29 November 2011
Graham Richards on 28 November 2011

Category: Uncategorised

Replies: 1

Last updated: 29 November 2011

Anthony Nolan
by marsy (Nov 29)

An additional point to note and relevant to people visiting this site, is that the Leukaemia & Lymphoma Research charity is also one of the groups hoping to be selected by the Football

by Graham Richards (Nov 28)

Hi
I am not sure if I am posting this on the correct page, however if wrongly posted maybe somebody could let me know. I have just been informed about the following:
Anthony Nolan has been
Category: Uncategorised

Replies: 1

Last updated: 29 November 2011
tartancaddy on 26 November 2011

Category: Uncategorised

Replies: 1

Last updated: 26 November 2011

birmingham local support group
by nigel (Nov 26)

Hi Gary, i am in north birmingham and think it would be good if a few were interested to meet up and have a chat / share experiences etc, anyone else interested ?
Nigel

by tartancaddy (Nov 26)

Hi Guys

I live in warwickshire and was wondering if anyone was willing to form a sort of local support group in and around the Birmingham area to possibly meet up and swap
Category: Uncategorised

Replies: 1

Last updated: 26 November 2011
ni2i on 24 November 2011

Category: Uncategorised

Replies: 2

Last updated: 24 November 2011

New PCR result
by david_a (Nov 24)

well done Naomii, hope you are celebrating!! Your well on track!
I got my latest PCR result yesterday = 0.006%
My results are dx july 2010 = 53%
3 months = 14%
6 months = 0.07%
9 months = 0.

by sandy craine (Nov 24)

Well done Naomii, looks like you are on track and will get a zero or two next time.
Best wishes,
Sandy

by ni2i (Nov 24)

Hi All
Hope your well.
I had my 3rd PCR result today and i'm quite happy. Here are my results so far:
Feb 2011- 96%
May 2011- 36%
Aug 2011-5.5%
I know they are 3 months behind but i am a very
Category: Uncategorised

Replies: 2

Last updated: 24 November 2011
nigel on 24 November 2011

Category: Uncategorised

Replies: 4

Last updated: 25 November 2011

Been on Imatinib for a month seeing Haematologist what should i have achieved ?
by nigel (Nov 25)

Thanks all, glad going well Jo, yes seems we ar same point, i'm at docs tomorrow after 4 weeks Glivec, will see how the bloods are.
Keep up the good work ! Nigel ;)

by joflo (Nov 25)

Hi Nigel
Sounds like I'm around the same timing as you- I've been on the Glivec 3.5 weeks precisely and had my clinic meeting yesterday with my consultant. You're right it's all

by Richard42 (Nov 25)

Hi Nigel
The general guide is to achieve complete haematological response within 3 months though many do it well before that. So, if all your counts are normal this time that's as good an

by ni2i (Nov 24)

Hi Nigel
I'm quite new to all this myself so i am sure others will have better advice but i can share my own experience so far. After a month of Glivec i had reached Heamatological response but
Category: Uncategorised

Replies: 4

Last updated: 25 November 2011
ian hinley on 23 November 2011

Category: Uncategorised

Replies: 2

Last updated: 25 November 2011

Durable complete molecular remission of chronic myeloid leukemia following dasatinib cessation, despite adverse disease features
by sandy craine (Nov 25)

Hi Ian... thanks for this encouraging article. I have put it on the home page.
Best wishes,
Sandy

by Richard42 (Nov 23)

And NICE challenged the effectiveness of dasatinib in second line....

by ian hinley (Nov 23)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3208693/
Durable complete molecular remission of chronic myeloid leukemia following dasatinib cessation, despite adverse disease features
David M. Ross,1,
Category: Uncategorised

Replies: 2

Last updated: 25 November 2011
Belinda Whitting on 22 November 2011

Category: Uncategorised

Replies: 7

Last updated: 28 November 2011

Results going the wrong way
by Belinda Whitting (Nov 28)

Hi sandy thank you so much for your help. A year ago my husbands bcr abl was 0.17 haemoglobin 13.4 White count 4.7 platelets 204. Thank you. Belinda.

by sandy craine (Nov 28)

Dear Belinda,
do you have the previous result to compare this one with? 0.79% is still a molecular response but you would need to know how much the 'rise' was to assess whether there is any

by Belinda Whitting (Nov 27)

Thank you everyone for taking the time to answer my questions your all very kind. Sandy I have found out my husbands BCr abl was showing to be 0.79? Thank you.x

by ruddoug09 (Nov 25)

The advice you've already received is spot on, blips can and do happen. My bcr-abl was coming down nicely since my dx last year and all of a sudden the results started going the wrong way
Category: Uncategorised

Replies: 7

Last updated: 28 November 2011
ni2i on 21 November 2011

Category: Uncategorised

Replies: 2

Last updated: 22 November 2011

PCR Help
by ni2i (Nov 22)

Thank you Sandy very reassuring as always will let you know how i get on.
Take care
Naomii x

by sandy craine (Nov 21)

Hi Naomii,
First point (and I think you have already said this) your pcr's are showing you have a good response so far.
Your May pcr result showed an 'optimal response' of approx. 60%

by ni2i (Nov 21)

Hi All
Hope you are all well, I am bit nervous as i get my 2nd PCR result on Thursday and was wondering what i should be looking for. I only have to see my consultant every 3 months so have
Category: Uncategorised

Replies: 2

Last updated: 22 November 2011
jackieb38 on 19 November 2011

Category: Uncategorised

Replies: 14

Last updated: 16 December 2011

AMAZING NEWS!!
by manadan71 (Dec 16)

Jackie, this is my first ever post on this site, although i have been lurking for many years!!! I had to register just so i could tell you how thrilled i am to hear this. I read your post a couple

by Belinda Whitting (Nov 27)

Fab news. Hope it all goes well.xx

by Richard42 (Nov 23)

Fantastic news Jackie. So pleased to hear this. Another success story for dasatinib. Very very best of luck with the transplant. Richard.

by Janet (Nov 22)

Dear Jackie
I am so so pleased for you - what fantastic news!!!! And yes, what a rollercoaster you have been on......
The very best of luck with your transplant, and don't forget to let us all
Category: Uncategorised

Replies: 14

Last updated: 16 December 2011
nigel on 19 November 2011

Category: Uncategorised

Replies: 4

Last updated: 20 November 2011

Allopurinol and how do they test a brother for stem cell match
by sandy craine (Nov 20)

Hi Nigel... allopurinol - I was taking this for around 3 weeks following start of 400mg imatinib. so as Chris says you will probably be taken off this very soon as long as your white cell count is

by cdw5000 (Nov 20)

Nigel,

I'm a little surprised too you've been on allopurinol for that amount of time, although from my experience that's not excessive. I think i was on it for 4-5 weeks overall.

by Pennie (Nov 19)

Hello Nigel
Allopurinol helps bring the white cell count down, not sure how long I took it for - about 4 weeks I think. Wonder where in the country you are? There are CML specialist centres

by jackieb38 (Nov 19)

Hiya Nigel,
I can't quite remember how long I was on Allipuinol when first diagnosed, I think it was a few weeks.
As for testing your brother to see if he is a match it is just a simple blood
Category: Uncategorised

Replies: 4

Last updated: 20 November 2011
sandy craine on 16 November 2011

Category: Uncategorised

Replies: 1

Last updated: 16 November 2011

CML: Mechanisms of Resistance & Treatment
by sandy craine (Nov 16)

Apparently the link does not take you to the full article.. try this link to the PDF
http://download.journals.elsevierhealth.com/pdfs/journals/0889-8588/PIIS0889858811001018.pdf
Sandy

by sandy craine (Nov 16)

for those of you who were at the Seminar in Cardiff, this extensive article refers to a lot of the issues discussed in Prof. Apperley's excellent presentation.
Take a look at the home page for
Category: Uncategorised

Replies: 1

Last updated: 16 November 2011
kate32 on 15 November 2011

Category: Uncategorised

Replies: 8

Last updated: 18 November 2011

Bile Reflux
by sandy craine (Nov 18)

Hi kate... just thought of another complimentary thing you could try... fresh ginger root is fantastic for dodgy diegestive tract stuff... or your could make a lemon and fresh ginger tea, which is

by kate32 (Nov 17)

Hello all and thanks for the further messages.
I have spoken to my drugs nurse as I am on a the SPIRIT trial, she is really nice and helpful. She has spoken to my

by liz (Nov 17)

Hi, Kate
If you feel like no meds are working, there is a small op that can be performed. Ask your consultant or GP to refer you to a gastro doc. It maybe something worth looking into, especially if

by cdw5000 (Nov 17)

Kate,
I'm sorry to hear you're having issues - I too am having the same issues on tasigna and i know it's not much fun. It sounds like you're doing all the right things. My reflux/
Category: Uncategorised

Replies: 8

Last updated: 18 November 2011