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Basil from RSA on 15 November 2011

Category: Uncategorised

Replies: 3

Last updated: 15 November 2011

News from Basil in South Africa
by Basil from RSA (Nov 15)

Hi Richard,
The approach I took was not as cautious as the STIM trials. PCR tests were only done every 3 months and what we were looking for was a continous upward trend in the results. I did have a

by sandy craine (Nov 15)

Hi Basil,
good news from you and thankyou for sharing it with us here. I will email you with some contact details- likewise Richard- so you can contact and update clinicians with your personal

by Richard42 (Nov 15)

Brilliant news, Basil. I've been following your results for a while...
As a potential candidate for a stop/reduce trial in the UK, I'm interested to know how often you are seen (

by Basil from RSA (Nov 15)

Hi all,
Just a little update on my status after stoppimg Imatinib at the end of April 2009 due to a few unbearable side effects.
Latest Quantitative PCR Test. (9/11/2011)
"Not detected
Category: Uncategorised

Replies: 3

Last updated: 15 November 2011
EmChops on 9 January 2012

Category: Uncategorised

Replies: 5

Last updated: 10 January 2012

May need to have a transplant if PCR results are not below 10%
by Annie Kennedy (Jan 10)

Emma
I do not have the answer to this but just wanted to say I was diagnosed 8 years ago, treated with imatinib and had even for those days a sluggish response _ started off with 100% PCR then down

by Lyndsey (Jan 9)

Hi Emma.
Im sorry to hear that you have this added stress since your last visit to your consultant. But hopefully if you have had a good run on nilotinib then this PCR will be below 10%. I am no

by sandy craine (Jan 9)

Hi Emma... I see why you are reeling! I think the generalised answer you got from Prof. Goldman might have been because you prefaced your question with the advice that your doctor had already given

by EmChops (Jan 9)

Thanks for the response Sandy,

I am at The Churchill hospital in Oxford, my consultant was responding to the advice now given by the Hammersmith with this figure of 10% at 3 months being the
Category: Uncategorised

Replies: 5

Last updated: 10 January 2012
Carol on 13 November 2011

Category: Uncategorised

Replies: 6

Last updated: 28 November 2012

NEW YEAR meeting of the Hammersmith Patient/ Carers support group
by Sunnyleon (Nov 28)

Researching ways to celebrate Chinese Brand new Year with family and friends? This Web site tells you Many ways to get a happy, healthy and prosperous Chinese Brand new Year! http://www.

by Carol (Dec 12)

Hi,
Thanks for asking about the Patient/Carer Meeting at Hammersmith on Saturday 7th January 2012. Anyone can attend our meetings patients & carers welcome but this meeting in particular is

by kylaswee (Dec 12)

Can anyone come and join with the meeting?

by RachaelB (Nov 16)

Snow willing, I'm hoping to make this one so see you there
Category: Uncategorised

Replies: 6

Last updated: 28 November 2012
bobosbo on 12 November 2011

Category: Uncategorised

Replies: 6

Last updated: 14 November 2011

Patient Seminar
by chrissie (Nov 14)

I would like to thank Sandy and all the speakers and organisers who gave up their time on Saturday to make the seminar so worthwhile.
regards to all
Chrissie

by sandy craine (Nov 14)

I agree that the seminar was good this year with very clear presentations- particularly from Professor Apperley. Professor Steve O'brien's talk about the STIM trials and the similar trial

by TheCoopers (Nov 13)

Excellent day, very much enjoyed it, and all the talks were very worthwhile attending. Please pass on our thanks to Andy and all the staff at UHW, they must have worked so hard to make all the

by Anonymous (Nov 13)

Thanks Bob likewise nice to put a face to a name, thanks for making me so welcome. I have had a look for the Hammersmith date in Jan but could only find 2011's, do you have any details as yet ?
Category: Uncategorised

Replies: 6

Last updated: 14 November 2011
david_a on 8 November 2011

Category: Uncategorised

Replies: 3

Last updated: 29 November 2011

Side effects - Why?
by keith Pratt (Nov 29)

Interesting thoughts there, now can I throw a spanner into your thoughts. I took Glivec from 2001 through to 2007. I did find odd effects, such as my hair actually changed colour, (much nicer than

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 stories or

by Olivia (Nov 9)

I share your ignorance about why the side effects occur, and in the form they do. I also wonder if anyone knows why they should be intermittent - for instance, I have had occasional hand

by david_a (Nov 8)

Hello all,
I am on Glivec 400mg and am currently on a PCR of 0.009%.
I have minimal side effects but suffer from some of the more common side effects which are occasional fatgiue, hand
Category: Uncategorised

Replies: 3

Last updated: 29 November 2011
clairebear on 8 November 2011

Category: Uncategorised

Replies: 9

Last updated: 29 November 2011

hello newbie
by sandy craine (Nov 29)

Dear Claire,
As promised here are the contact details for the Leukaemia society in Australia person working in Perth.

Sarah Langmead
Support Services Manager
The Leukaemia Foundation

by clairebear (Nov 28)

thanks everyone for all the helpful comments and support , not to mention the hugs well recieved!!
Its been a while apologies, had a mystery virus and was wiped out for best part of a week , then

by Kate (Nov 15)

Hi Claire,

I was in your exact situation just over a year ago!

I am a 37 year old from Wales and I've been living in Sydney for nearly 5 years.

I was diagnosed in Sept 2010. As you

by joflo (Nov 10)

Just wanted to say Hi and glad you found the forum. I was diagnosed this 14th Oct just gone so am also new to it all too ( lovely 40th birthday present!). I discovered this site by chance
Category: Uncategorised

Replies: 9

Last updated: 29 November 2011
sandy craine on 3 November 2011

Category: Uncategorised

Replies: 9

Last updated: 15 November 2011

NICE: FAD Appeal
by sandy craine (Nov 15)

We have to wait until 2nd week in January before we know the outcome and how the Appeal panel have judged. If they find in our favour they will ask for the the original MTA to be re-appraised

by irenekallison (Nov 15)

Has there been an update that I have missed?
Irene

by Olivia (Nov 4)

Just adding to the list of well-wishers! Hope it goes better than well, if that's possible?

by joflo (Nov 4)

Good luck Sandy and Co hope the right outcome is achieved . Jo
Category: Uncategorised

Replies: 9

Last updated: 15 November 2011
robforrest on 2 November 2011

Category: Uncategorised

Replies: 3

Last updated: 9 November 2011

Conceiving on Glivec
by robforrest (Nov 9)

Thanks guys for the posts, its always nice to hear other people have been through the same.
I spoke with my consultant about this the last time I saw him and he towed the classic doctor line of

by bc (Nov 9)

Hi Rob,
We had a similar sort of experience. Diagnosed Nov 2007 and have been on Imatinib 400 and 600 (for the last year/18 months). Fertility issues were one of the things that were important

by cmlblogger (Nov 3)

Dx'd back in 2006, initially the doctors advice was not to try for more children, this advice changed a couple of years later so we started trying for child #2
And after a little while we had a

by robforrest (Nov 2)

Hi All,
I was dx'ed back in early 2009 and finally after a steady decline, I've git the magic 0.1% BCR/ABl. My wife and I are now thinking of starting a family and I was wondering if anyone
Category: Uncategorised

Replies: 3

Last updated: 9 November 2011
Anonymous (not verified) on 2 November 2011

Category: Uncategorised

Replies: 2

Last updated: 2 November 2011

Night sweats – Glivec side effect ?
by lisad123 (Nov 2)

my husband had been having night sweats for about 6 months before he was dx'ed. He was very unwell but was still in first stage of cml. I could be a side effect or it could be the cml itself.

by Olivia (Nov 2)

I have had night sweats all the time I've been on Glivec - 2 years now - but not all night, and not every night. They are just one of those things we have to put up with. As well as

by Anonymous (Nov 2)

Hi all, I been on Glivec for 2 weeks now, had some bad leg cramps for a few days easing off now, found Ibuprofen low does has helped.
Last couple of
Category: Uncategorised

Replies: 2

Last updated: 2 November 2011
hcy0da on 2 November 2011

Category: Uncategorised

Replies: 3

Last updated: 5 November 2011

Glivec Mouth?
by sandy craine (Nov 5)

Hi Naomii,
I have never been told to avoid vitamins/minerals. These are food supplements- i.e what we should get from the foods we eat.... however, the way foods are produced, farming /growing/

by ni2i (Nov 3)

Hi I also have the same problem, started with outh ulcers and then swollen purple gums m heamatologist thinks its from the gleevec, as it only started after taking them. Im not in pain with my gums

by sandy craine (Nov 3)

I have not heard of this side effect.. you might look at supplementing with B Vits as it might be that you need a little more B's etc in your diet. I think one of the signs of B deficiency

by hcy0da (Nov 2)

I have been on Imatinib for 2 years now post transplant and over the last few months have experienced quite sore gums. Several trips to the dentist and a whole face x-ray later has established there
Category: Uncategorised

Replies: 3

Last updated: 5 November 2011
joflo on 30 October 2011

Category: Uncategorised

Replies: 1

Last updated: 30 October 2011

Newly diagnosed any advice/support please
by sandy craine (Oct 30)

Good you found us early on because as you say- the best people to talk to are the one's who have the same experience and therefore understand what you are feeling and understand what you need to

by joflo (Oct 30)

Hi All
Am I glad I came across this site - first time I have had nerve to google as am totally petrified of what I may find out.
Only just diagnosed about 2 weeks ago and I can't tell you
Category: Uncategorised

Replies: 1

Last updated: 30 October 2011
lisad123 on 29 October 2011

Category: Uncategorised

Replies: 2

Last updated: 30 October 2011

HELP, moving PCT after NICE guidelines change on Dasatinib
by sandy craine (Oct 30)

The NICE guidlines are not legal just yet. We have an appeal to get through first. Even so, those who are already treated with dasatinib or nilotinib will remain on treatment unless they cease to

by Pennie (Oct 30)

Hi Lisa not sure of the position now, but when I moved PCT the new one accepted the drugs I was on as OK. Perhaps one way is to stay as a Hammersmith patient and do sharecare with

by lisad123 (Oct 29)

hello all,

sorry its been so long since posting. History for those that dont know. My husband Darren was dx'ed with CML, in April 2009 and to start with he wasnt well at all. |When dx
Category: Uncategorised

Replies: 2

Last updated: 30 October 2011
Anonymous (not verified) on 29 October 2011

Category: Uncategorised

Replies: 1

Last updated: 29 October 2011

Ache legs, Magnesium and Basophils
by sandy craine (Oct 29)

Hi Nigel.... well done on normalisation of blood counts- HR (Haematological Response). within 4 weeks from starting with imatinib therapy is the first goal.
Don't worry- basophils are not blast

by Anonymous (Oct 29)

Hi been on Glivec for 12 days and top of my legs ache, cramps somewhat yesterday and today, feels like after you have exercised to much, and then the following day feeling. Otherwise no side effects
Category: Uncategorised

Replies: 1

Last updated: 29 October 2011
EmChops on 28 October 2011

Category: Uncategorised

Replies: 7

Last updated: 12 November 2011

Water during fasting on Nilotinib please comment if you do
by EmChops (Nov 12)

Thank you so much everyone. i have now had it confirmed by my trial nurse I can drink water during the fasting period. you would not believe the difference it has made to my life, i no longer zone

by lynnsch (Nov 12)

Hi Emma,
I have been on Nilotinib for a year. I have been told that its fat that transports the drug into your bloodstream to quickly and that's why you fast. I personally drink mint tea,

by EmChops (Oct 30)

This really has changed everything! I have started sipping water during fasting although my husband is very reluctant for me to do it without checking with the trial people so I shall call first

by EmChops (Oct 30)

This really has changed everything! I have started sipping water during fasting although my husband is very reluctant for me to do it without checking with the trial people so I shall call first
Category: Uncategorised

Replies: 7

Last updated: 12 November 2011
Janet on 28 October 2011

Category: Uncategorised

Replies: 1

Last updated: 29 October 2011

Webcast - Dr Michael Mauro
by sandy craine (Oct 29)

Hi Janet... thanks. I have uploaded this to the video page as I found a way of getting the embed code by linking to Patient Power via their YouTube link rather than through their webpage.
I agree

by Janet (Oct 28)

This is a webcast by Dr Michael Mauro, an eminent US haematologist. He covers a range of CML treatment questions, the quest for a cure, and treatments for those who do not respond to current TKIs.
Category: Uncategorised

Replies: 1

Last updated: 29 October 2011
cousineg on 28 October 2011

Category: Uncategorised

Replies: 2

Last updated: 29 October 2011

What is the first day of clinical trials for Gleevec?
by cousineg (Oct 29)

According to this article, the first patient, Bud Romine took his first dose of the experimental drug on Thursday, June 25, 1998, at Oregon Health Sciences University.
http://www.

by sandy craine (Oct 29)

thanks for the links to these video's. I actually remember Bud and Yvonne because they were still at OHSU when I started the phase ll trial back in August 99. Watching these video's brought

by cousineg (Oct 28)

See this video: The first day of clinical trials for Gleevec, Bud and Yvonne
See also the History of CML
Category: Uncategorised

Replies: 2

Last updated: 29 October 2011
ruddoug09 on 27 October 2011

Category: Uncategorised

Replies: 3

Last updated: 9 November 2011

Help needed please - a bit confused!
by ruddoug09 (Nov 9)

Hi Sandy
I had the meeting today and the PCR has dropped again to 0.48% (October blood test).
However, the doc said that he wanted to see the cytogenetic showing a negative result, but its actually

by ruddoug09 (Oct 28)

Thanks for a fantastically comprehensive reply Sandy! That's just what I need and I'll take they key points to my meeting next month when hopefully we have an indication to the appeal result.

by sandy craine (Oct 28)

Hi Neil,
I would say that your doctor might be being a little bit picky here given your level is now at
0.62% rather than 0.1...%
the difference between .6 and .1% = .5 .... not much in the scheme

by ruddoug09 (Oct 27)

Hi
I was diagnosed 12 months ago and since the end of November 2010 I've been on standard 400mg Imatinib. My PCR results have gone as follows
Nov-10 71.80%

Jan-11
Category: Uncategorised

Replies: 3

Last updated: 9 November 2011
Steven D on 25 October 2011

Category: Uncategorised

Replies: 1

Last updated: 26 October 2011

I might like to change to Bosutinib
by Ali Loram (Oct 26)

Hi Steven, will contac you via email

by Steven D (Oct 25)

Hi
I have had CML since August 2004 and for the 1st 5 1/2 years was on Gleevec with a good response. However I had quite a few side effects and in May 2010 was changed to Nilotinib. I am doing very
Category: Uncategorised

Replies: 1

Last updated: 26 October 2011
Lyndsey on 25 October 2011

Category: Uncategorised

Replies: 9

Last updated: 27 October 2011

1st PCR result
by EmChops (Oct 27)

well done! really good news, congratulations!
Emma x

by Ali Loram (Oct 27)

Hi Sandy,
Thanks for you kind words, its been such a relief for now. My liver continues not to like Bosutinib, ALT is around 170, although the last one showed 118 for some reason. I think

by sandy craine (Oct 27)

Hi Ali,
this is such good news. You are obviously very sensitive to TKI therapy- given your current response to such a low dose of bosutinib. It must be such a relief for you given your experiences

by chrissie (Oct 26)

Hi Ali
It was good to talk the other day.So pleased to see that your PCRs have come down now. Congratulations - and to Olivia and Lyndsey as well. I am going to Cardiff on the 12th - so we may meet
Category: Uncategorised

Replies: 9

Last updated: 27 October 2011
Anonymous (not verified) on 24 October 2011

Category: Uncategorised

Replies: 4

Last updated: 26 October 2011

Barrier Contraception - Glivec
by sandy craine (Oct 26)

Hi Nigel,
Just for clarity on this specific and very important issue- you say this 'advice' was from your specialist- is that a CML specialist or a general haematologist?
Best wishes,
Sandy

by Anonymous (Oct 25)

Thanks for the notes both Sandy and Richard, very helpful, for info the advise was from my specalist !

by Richard42 (Oct 25)

Hi Nigel
I agree with what Sandy says - the advice given by the doctor who suggested Glivec would somehow be passed on to your wife is most odd and I have never heard that before, nor read it

by sandy craine (Oct 25)

Hi Nigel,
I am very surprised at the advice you received. I have NEVER heard any CML expert clinician express this opinion. Remember, Glivec is a targeted therapy and not chemotherapy in the
Category: Uncategorised

Replies: 4

Last updated: 26 October 2011