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karen on 20 August 2013

Category: Uncategorised

Replies: 1

Last updated: 20 August 2013

Bosutinib
by sandy craine (Aug 20)

Hi Karen....good luck with this one. I hope it proves to be the one!

I think there are not many more than 50 patients throughout the UK who are currently taking bosutinib. I can put you in

by karen (Aug 20)

Hello,

I am about to start Bosutinib this week and was wondering if anyone who had used it had any words of wisdom for me? Starting on 300mg and hopefully increasing the dose over time to
Category: Uncategorised

Replies: 1

Last updated: 20 August 2013
Steven Davies on 18 August 2013

Category: Uncategorised

Replies: 5

Last updated: 10 September 2013

My Diagnosis back on August 18th 2004
by angela (Sep 10)

Congratulations Steven, really pleased for you. Angela

by sandy craine (Aug 21)

Hi Steven, you can find details on the patient day overview at the top of the page- in red.

this is the paragraph on DESTINY:
DESTINY – a UK study using dose de-escalation for those with

by chrissie (Aug 20)

Hi Steven
I am interested in this one and awaiting the go ahead.
Best

Chrissie

by Steven Davies (Aug 20)

Thank you Sandy.
I must have missed that one. I not heard of it. Do you have anymore details.
Many thanks Regards
Steven
Category: Uncategorised

Replies: 5

Last updated: 10 September 2013
Thomaskk on 4 February 2014

Category: Uncategorised

Replies: 4

Last updated: 20 March 2014

Senior Most Person on Gleevec ?
by darley (Mar 20)

I also went on it when it was still in trial... I'm thinking 13/14 years ago now.
I'm on 400mg per day.
As far as I'm concerned it's a miracle drug. :)

by pat preston (Feb 21)

Hello Thomas, You may be interested to know that I have been on Imatinib since the year 2000 when I began taking it when it was on trial in the UK. It makes me a very expensive woman! In my view

by sparkypcl (Feb 5)

Hi Thomas,
I've been on Glivec since September 2003, was originally on 400mg for the first 6 months then was changed to 600mg per day which is the amount I still take. Don't have many side effects

by Steven Davies (Feb 5)

Hi. There are many people who are on long term imatinib. But like any drug you could become resistant to it. That ia a small proportion. Some people lie me the drug works very well but I'm
Category: Uncategorised

Replies: 4

Last updated: 20 March 2014
markfrommk on 13 August 2013

Category: Uncategorised

Replies: 8

Last updated: 26 November 2013

Newly diagnosed in Milton Keynes
by sandy craine (Nov 26)

Hi Vic,
Good to hear you are doing well on imatinib (Glivec) and that this website has been helpful to you.
Best wishes,

Sandy

by Vic (Nov 25)

Hi, I'm Vic, i'm under MK hospital & had CML for 6+ years & am 37 now.

Tea total ish except for the odd bottle of Baileys!

Hope you are doing ok on Glivec, wonder drug for me

by RodM (Aug 15)

Glad things are working out ok, and welcome to the club.
On drinking, I haven't really changed my habits at all. Anything beyond about 3 beers or half a bottle of wine is rare for me, but one does

by Richard42 (Aug 14)

Hi
I was diagnosed in May 09 aged 42. Have been on Glivec ever since and done really well.
At first, I stopped all alcohol as I just didn't like it with Glivec. Gradually I have become
Category: Uncategorised

Replies: 8

Last updated: 26 November 2013
Basil from RSA on 8 August 2013

Category: Uncategorised

Replies: 1

Last updated: 9 August 2013

News from Basil in South Africa
by sandy craine (Aug 9)

Hi Basil,
just to remind you that one PCR result does not necessarily reflect what is actually going on. You have had this result before- you said your highest was in 2010 - so even if this is a

by Basil from RSA (Aug 8)

As many of you may know by now I have had a wonderful trip off Gleevec or any other TKI's.

It has been 4 years and 3 months ago that I took my last 400mg of Gleevec.

Over this period I
Category: Uncategorised

Replies: 1

Last updated: 9 August 2013
tartancaddy on 6 August 2013

Category: Uncategorised

Replies: 5

Last updated: 9 August 2013

imatinib v newer TKI's
by Steven Davies (Aug 9)

Hi Gary
I was dx 9 years ago next week and have just received my latest PCR result of 0.014. I am intolerant to the TKI's which means they all work for me but they all have bad side effects.
I

by tartancaddy (Aug 8)

Hi Sandy
Thanks once again for your very informative reply. My PCR results were fine the last time i attended hospital. I've just moved from Warwickshire to Edinburgh and meeting my new Consultant

by sandy craine (Aug 6)

Hi Gary,

access to one of the 2nd Gen TKIs depends on where you live. Nilotinib, as Karen has already suggested, is available through the NHS for both 2nd and 1st line therapy in England

by tartancaddy (Aug 6)

Hi Karen
Thanks for the info. I'll have a look at Nilotinib.
Category: Uncategorised

Replies: 5

Last updated: 9 August 2013
kathy on 8 August 2013

Category: Uncategorised

Replies: 1

Last updated: 8 August 2013

white cell 2.7
by sandy craine (Aug 8)

Hi Kathy,

First congratulation on your stable MMR. Regarding white cells counts, it is my understanding that 2.7 is fine. As long as your neutrophils are at a decent level- i.e somewhere over

by kathy (Aug 8)

hi guys had my appointment yesterday and my count was down from 4.4 to 2 .7,is there any reason for concern,im still in mmr so good news there.my consultant'who's new to clinic' said he may have to
Category: Uncategorised

Replies: 1

Last updated: 8 August 2013
Basil from RSA on 6 August 2013

Category: Uncategorised

Replies: 1

Last updated: 7 August 2013

Stressfull times
by sandy craine (Aug 7)

Hi Basil, good luck for a continued stable molecular remission.

Sandy

by Basil from RSA (Aug 6)

My blood samples were taken on Monday. Now the anxious wait.

To date I have been off Gleevec for 4 years and 3 months.

These are always very stressful times waiting for the results.
Category: Uncategorised

Replies: 1

Last updated: 7 August 2013
ClaudeM on 5 August 2013

Category: Uncategorised

Replies: 2

Last updated: 19 February 2014

Interferon / Roferon / Peginterferon negative side effects research
by ClaudeM (Feb 19)

UPDATE:
I finished creating my research / book with the help of steadyhealth and it's completely free.
It's called "Dealing with Interferon Side Effects: Patient Stories". And it has...well, exactly

by sandy craine (Aug 5)

Hi Claude,
I am not sure where you were/are treated, but - certainly in Europe and specifically in UK- Interferon in any of its forms is NOT recommended as first line therapy, and certainly not as a

by ClaudeM (Aug 5)

Hi,
I would like to help other people who are in treatment or about to start one with any kind of Interferon. I was on this drug for a whole year and it was , mildly said, the worst time of my life
Category: Uncategorised

Replies: 2

Last updated: 19 February 2014
Parklife on 3 August 2013

Category: Uncategorised

Replies: 17

Last updated: 12 July 2014

Advice after recent diagnoses.
by Parklife (Jul 12)

Hi
I will start by saying that I came across your post by chance as I haven't been on the forum for a while as things have been manic (Not CML related, as you will see later in my post ;-)). I was

by Wellfi (Jul 7)

Hi John, I know this is an old post but have just read through it while looking for some info and I can relate. My husband has just been diagnosed at 29 years old and I am 6 months pregnant with our

by David Fitz (Aug 7)

If you want to read more, I'd recommend this book. It can get a little technical at times, but not overly so and you don't need to understand the occasional sciency bits to get the overall picture.

by Parklife (Aug 7)

Hi David
Thanks for getting back.
It's all hopefully going to become more familiar as time goes by, I need to read more! I think for me is I don't want to be misunderstanding something that makes
Category: Uncategorised

Replies: 17

Last updated: 12 July 2014
Pennie on 1 August 2013

Category: Uncategorised

Replies: 8

Last updated: 20 August 2013

Latest PCR and 12 year CML anniversary
by vickiep (Aug 20)

Well done Pennie...excellent news, you've done so well and weathered so much over the last 12 years..

Congratulations!

Vickie

by EmChops (Aug 8)

Hi Pennie

Such good news with your PCR result and 12 year anniversary, very heartening for all of us too.

This site and your story always help, I don't come on often but days like today

by sandy craine (Aug 5)

Hi Pennie.... many congratulations on your continuing excellent response. Your latest PCR result is excellent- being somewhere between MR4 and MR 4.5 and will no doubt encourage others who are more

by skiinglaketahoe (Aug 4)

Hi Pennie
Great to hear that you are doing nicely. Well done on the anniversary. It is always nice to hear how you are doing.
Regards

Susan
Category: Uncategorised

Replies: 8

Last updated: 20 August 2013
Steven Davies on 30 July 2013

Category: Uncategorised

Replies: 2

Last updated: 2 August 2013

2 weeks short of 9 years
by Richard42 (Aug 2)

Great news Steven

by sandy craine (Jul 31)

Hi Steven,

Just to say well done and congratulations. I know you have had quite a few intolerance issues but at least you are now comfortable with your QoL on nilotinib and.... an excellent

by Steven Davies (Jul 30)

Went for my regular check up today at and just 2 weeks short of 9 years I'm 0.022. I have been at this level for a number of years and only once reached PCRu when I changed to Bosutinib for a short
Category: Uncategorised

Replies: 2

Last updated: 2 August 2013
Dennis on 30 July 2013

Category: Uncategorised

Replies: 8

Last updated: 31 July 2013

Holiday insurance nightmare!
by Dennis (Jul 31)

Seems this is the only way to go for me - at the moment. Hopefully things might change.

by Dennis (Jul 31)

I got in touch with Hiscox, David. Nice company, gave me a quote then got me to ring their medical line. I spoke to a qualified nurse who understood CML, understood that I'm in MMR, Understood that

by sandy craine (Jul 31)

Hi Dennis,
this is and always has been a problem and I do not see the insurance industry changing any time soon- no matter what. I think that - as David says- the 'computer says no' scenario is

by cdw5000 (Jul 30)

Dennis,
I've traveled quite a bit since Dx. I'm also MMR and have been for some time. I received some silly quotes from a 'specialist' insurer (read: we can justify high prices because we're a '
Category: Uncategorised

Replies: 8

Last updated: 31 July 2013
cdw5000 on 27 July 2013

Category: Uncategorised

Replies: 8

Last updated: 2 August 2013

Emerging Strategies for Targeting CML Stem Cells
by Lyndsey (Aug 2)

Thanks sandy

I am on the HCQ 800mg along side the imatinib 400mg. Next bone marrow oct. Prof Holyoake is very good at explaining things and you can see her passion when she speaks. She is

by sandy craine (Aug 2)

hi Lyndsey,

this study is certainly 'one to watch'. I hope you can take time to keep us informed as you go on. Hopefully you will see a further drop in PCR test next time. Just to clarify- you

by Lyndsey (Jul 30)

I have tolerated it very well. Initially after 3 weeks on drug I got constant diarrhoea the drug was stopped until settled. Sample etc taken to rule out infection then drug restarted at same dosage

by sandy craine (Jul 30)

Hi Lyndsey,
Thanks for your update, it is obvious that you are doing very well as your last PCR result shows. Can you let us know how you have got on with the new therapy? ... has the HCQ caused you
Category: Uncategorised

Replies: 8

Last updated: 2 August 2013
sandy craine on 31 July 2013

Category: Uncategorised

Replies: 3

Last updated: 4 August 2013

Bosutinib patients in Scotland?
by skiinglaketahoe (Aug 4)

Pleasure Sandy, sorry to be such a nerd looking out for typos......
Hope you do get some response but as you say it is going to be difficult - but you have to try!
Susan

by sandy craine (Aug 1)

Thank you Susan, I have now corrected it. Not too hopeful of a response as there are so few (I only know of one) patients on bosutinib in Scotland. Nevertheless we need to try.
best wishes,
Sandy

by skiinglaketahoe (Jul 31)

think you have a typo on the email address so you may not get any responses
Susan

by sandy craine (Jul 31)

The upcoming SMC appraisal is crucial if bosutinib is going to be available to CML patients in Scotland and given the recent NICE ACD which does not recommend bosutinib for treatment in England (we
Category: Uncategorised

Replies: 3

Last updated: 4 August 2013
sandy craine on 26 July 2013

Category: Uncategorised

Replies: 1

Last updated: 26 July 2013

New article on Home Page: State of CML Treatments.
by David Fitz (Jul 26)

I read this article this morning, unrelated to seeing this post, and was interested in this piece of it [talking about the genesis of the Ph+ chromosome in an individual]:
"How and why that happens

by sandy craine (Jul 26)

http://www.cmlsupport.org.uk/node/7982
Category: Uncategorised

Replies: 1

Last updated: 26 July 2013
Olivia on 25 July 2013

Category: Uncategorised

Replies: 4

Last updated: 2 August 2013

Does cancer run in families?
by Richard42 (Aug 2)

My mother has had CMML for 8 years, diagnosed 4 years before my CML. I was told this is coincidence, and hers is dysplastic not proliferative like CML. To my knowledge no one else in my family has

by Steven Davies (Jul 28)

Hi
In 2 weeks it will have been 9 years since dx and considering my local hospital said I had 3-5 5 years . What they forgot to say is that I had 3-5 years without medication. Obviously once I got

by Olivia (Jul 28)

Hi Sandy
That's really interesting! Perhaps I should warn my family about the possibility. It makes me wonder whether we have a genetic glitch that makes us a little more susceptible, and then

by sandy craine (Jul 25)

Hi Olivia,
my mum was recently (2 years ago) diagnosed with CLL. It was a bit of a shock for my family as they had only just about got used to me having CML! CLL has a higher incidence rate than CML
Category: Uncategorised

Replies: 4

Last updated: 2 August 2013
Luisa on 24 July 2013

Category: Uncategorised

Replies: 10

Last updated: 8 April 2014

neutropenia on nilotinib
by cdw5000 (Apr 8)

I'm not aware of the 400mg once a day either, but it seems to be doing the trick!
The cynical side of me thinks Novartis probably understands how to get to a single dose and maintain adequate plasma

by sandy craine (Apr 8)

Hi Steven,
I think you are the first person I am aware of who is on 00mg once daily, although I am sure there are others.

My question is, why are you not required to divide the 400mg into

by Steven Davies (Apr 2)

Hi Luisa.
Sorry to but in but just reading your latest post.. I am on 400 mg Nilotinib once a day as I cannot tolerate the full dose..

The full dose is actually 400mg twice daily. (800mg) .

by Luisa (Apr 2)

Hi Dav,

I still use this forum occasionally. I tend to read other people's stories rather than posting myself!. Anyway to answer your question: after a week off nilotinib my blood counts
Category: Uncategorised

Replies: 10

Last updated: 8 April 2014
Sarah Bo on 23 July 2013

Category: Uncategorised

Replies: 2

Last updated: 23 July 2013

PCR Results
by David Fitz (Jul 23)

Congrats Sarah - that sounds awesome! Onwards and downwards!

by sandy craine (Jul 23)

Hi Sarah... very good news, and given you have had this within 6 months it is likely that you will respond well to imatinib. It's also great that you have few side effects - oh and that you feel

by Sarah Bo (Jul 23)

Hello,
Hope everybody is well.
I have just had my 6 month PCR results back from the Hammersmith and I am pleased to say they are now at 0.88%. I am so pleased as I was worried whether Imatinib would
Category: Uncategorised

Replies: 2

Last updated: 23 July 2013
tartancaddy on 22 July 2013

Category: Uncategorised

Replies: 4

Last updated: 24 July 2013

affect of chemo on having children
by tartancaddy (Jul 24)

guys, thanks for all your helpful comments.

by sandy craine (Jul 23)

I would also add to Rod's suggestion that you read the following from the CML Horizons Conf. where Prof. Jane Apperley presented about fertility and pregnancy issues.

The full report is on the

by bc (Jul 23)

Hi Gary,
What sort of chemo are you talking about? Hydroxyurea possibly on first diagnosis? My understanding (I went through a similar situation) is this is low dose chemotherapy and shouldn't

by RodM (Jul 22)

Hi
I suggest you watch the videos on pregnancy in CML, which do also deal with fathering a child.
Available using the links at the top of the forum topic lists.
Rod
Category: Uncategorised

Replies: 4

Last updated: 24 July 2013