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Steven Davies on 16 April 2015

Category: Getting help

Replies: 2

Last updated: 25 May 2015

Hammersmith Patitent/Carer Meeting Saturday 30th May 2015
by Steven Davies (May 25)

Please book now for the Hammersmith Patient Carer meeting this Saturday

by Steven Davies (Apr 27)

Places going fast so please book early.

by Steven Davies (Apr 16)

Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME LEUKAEMIA PATIENTS SUPPORT GROUP CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 0HS The next meeting of
Category: Getting help

Replies: 2

Last updated: 25 May 2015
markmcd on 26 April 2015

Category: Side effects

Replies: 6

Last updated: 19 May 2015

Imatinib not working well and Nilotinib not tolerated - any advice/suggestions?
by sandy craine (May 19)

Hi Mark... this is good news - back on full dose without a return of the initial problems. Shows that when you have a clinician and a pharmacist who are 'engaged' you can be sure you are in good

by markmcd (May 16)

Thanks for your feedback Sandy & Lucas.
A brief update - hopefully of use to someone in future.
Discussed with my Haematologist and the Pharmacist at the hospital, and switched from the

by Lucas (Apr 28)

hi, mark. somehow i'm lucky and don't have many side effects from those drugs. on nilotinib i went to 800mg and never had to lower the dose. i just have a little fatigue, some skins problems and low

by sandy craine (Apr 28)

Mark... welcome. It's good that you have found this forum as there are many on here who can advise. I think all your questions are very relevant and will try to answer as best I can (although Lucas
Category: Side effects

Replies: 6

Last updated: 19 May 2015
David Ryner on 13 April 2015

Category: Treating CML

Replies: 1

Last updated: 6 May 2015

Ponatinib approved for use in Scotland
by David Ryner (May 6)

CML Support has now written to all 14 local Health Boards in Scotland advising them of the SMC's recommendation for the use of ponatinib for the treatment of CML in all the indications (or clinical

by David Ryner (Apr 13)

Very good news today from the NICE equivalent in Scotland, the Scottish Medicines Consortium (SMC), with ponatinib approved for use in Scotland in what are called all its licensed indications. That
Category: Treating CML

Replies: 1

Last updated: 6 May 2015
Steven Davies on 9 April 2015

Category: Uncategorised

Replies: 1

Last updated: 10 April 2015

Denial of ponatinib by the CDF fund in 12 out of 14 applications
by David Ryner (Apr 10)

Kris is correct in pointing out the abysmal success rate of Cancer Drugs Fund Individual Funding Requests (ICDFRs), made within overall Cancer Drugs Fund (CDF) procedures, for the treatment of CML

by Steven Davies (Apr 9)

Just seen this on face book about the denial of ponatinib by the CDF a
Ponatinib Access: Denied

by Kris Griffin

14 patients who requested ponatinib (from April 2013 to March 2015), just
Category: Uncategorised

Replies: 1

Last updated: 10 April 2015
Parklife on 24 April 2015

Category: Uncategorised

Replies: 5

Last updated: 28 April 2015

Bosutinib vs Dasatinib choice for side effects
by sandy craine (Apr 28)

Hi John,
Very glad to hear you have been able to make a choice- pretty rational to try a TKI that targets a slightly different pathway- although dasatinib is a dual inhibitor and although it does

by Parklife (Apr 27)

Hi guys.
Thanks Sandy and Chris for all your input.
I have spoken to my Consultant and he thinks I should go for a low dose Dasatinib. I collect script as soon as paperwork completed.
I mentioned I

by cdw5000 (Apr 27)

just a quick reply (late for work), but Dasatinib seems like the next obvious step. I've read (anecdotally) about several people maintaining an adequate response on a very low dose of Dasatinib.
As

by Parklife (Apr 26)

Hi Sandy
Many thanks for getting back with your thoughts and advice.
It may be worth me pointing out that my PCR did drop and stabilise whilst being on Nilotinib over the rough year I was assigned
Category: Uncategorised

Replies: 5

Last updated: 28 April 2015
shaynalee on 7 April 2015

Category: Uncategorised

Replies: 5

Last updated: 13 April 2015

fertility and sprycel in males? please help
by David Fitz (Apr 13)

Hi, the NHS (National Health Service) is the publicly funded health service in the UK.
David.

by shaynalee (Apr 13)

David, I dont know what NHS is... we are in the united states, I just happened across this forum when I was doing research and found some of the topics very helpful. We were told by 2 different

by David Fitz (Apr 10)

Hi,
I'm a few years older than your husband, but in a similar situation. The research in inconclusive whether there is a fertility issue in men on Sprycel / dasatinib - perhaps there is no problem

by sandy craine (Apr 9)

Hi,

I am sorry to hear your husband has been diagnosed with CML at the young age of 25.
As Nigel has said, Sprycel (dasatinib) is one of 5 very effective TKIs, and it is more than likely that
Category: Uncategorised

Replies: 5

Last updated: 13 April 2015
sandy craine on 7 April 2015

Category: Uncategorised

Replies: 1

Last updated: 8 April 2015

Side effects of targeted treatments: clinicians' perceptions, patients' realities
by darley (Apr 8)

Oh well it keeps someone occupied

by sandy craine (Apr 7)

The side effects of targeted drugs are poorly documented, and their impact on patients frequently seriously underestimated and undertreated. Efforts to address these issues could improve survival as
Category: Uncategorised

Replies: 1

Last updated: 8 April 2015
wshi2001 on 31 March 2015

Category: Uncategorised

Replies: 5

Last updated: 8 April 2015

Has any one experienced anemia during TKI therapy?
by darley (Apr 8)

I couldn't leap to that conclusion nor to finding it being the cause. It could be entirely coincidental.
Don't stop your doctor doing other investigations for other commonly occurring things such

by wshi2001 (Apr 8)

Thanks to Lucas, Sandy for sharing their experiences, and Chrissie's beetroot therapy. I was never disappointed posting a question in this forum. So it looks like anemia is quite common with people

by chrissie (Apr 1)

I heard about a trial at our local hospital for patients with anemia - eating beetroot. As strange as this seems when I mentioned it to my fitness instructor at our sports centre she wasn't in the

by sandy craine (Mar 31)

Hi William,

I think you response is quite good as Lucas has said... that is if your PCR testing lab is tied to the IS (international scale) an optimal response goal could be MMR (0.1% or 3 log
Category: Uncategorised

Replies: 5

Last updated: 8 April 2015
sandy craine on 24 March 2015

Category: Getting help

Replies: 5

Last updated: 28 May 2015

Question 3: Finding support and information
by darley (May 28)

Which groups are you a member of or have you been a member of and which ones were/remain useful to you?
I came to this site when I was having immense problems with the company "Healthcare at Home"

by Simon Clayson (May 27)

My wife has never been a member of any support group and has rather left it to me to learn about CML while she gets on with life, ignoring it as much as possible. I found this site quite quickly

by sandy craine (Apr 7)

Dear Olivia and Chrissie,

thanks for you helpful response to Question 3. The reason I asked is because we are in the process of rebuilding this website and need to know the links that are

by chrissie (Mar 25)

This site is the only one I use. Like Olivia, I read this site most days. Our hospital doesn't have such a group as far as I am aware. So thanks to this site which offers such a marvellous bank of
Category: Getting help

Replies: 5

Last updated: 28 May 2015
karen on 22 March 2015

Category: Uncategorised

Replies: 1

Last updated: 22 March 2015

Article in today's Daily Mail
by darley (Mar 22)

It's the Daily Mail.
Furthermore the article doesn't validate or live up to the headline.
Neither does it even read like a report of a clinical trial.
I've a strong sense it's just the Mail doing

by karen (Mar 22)

Is this a miracle cancer vaccine? Scientists hail breakthrough treatment as a 'game changer' http://dailym.ai/1AYgNnd @MailOnline
Category: Uncategorised

Replies: 1

Last updated: 22 March 2015
sandy craine on 21 March 2015

Category: Uncategorised

Replies: 1

Last updated: 21 March 2015

Seville orange and drug interaction
by Olivia (Mar 21)

I read the article - and it seems, if I have got it right, that home-made marmalade may be OK? Some part of the cooking process, different from a factory one, may lead to a reduction in the things

by sandy craine (Mar 21)

One quick comment on the Seville orange,
There is not much published on the effect of the different preparation that you can make with those, but from a recent Japanese one, it seems that marmalade
Category: Uncategorised

Replies: 1

Last updated: 21 March 2015
Kosmo126 on 16 March 2015

Category: Uncategorised

Replies: 2

Last updated: 17 March 2015

Margin of Error in PCR Result
by Steven Davies (Mar 17)

Could it possibly be the difference between the local lab standard result and the result on the international standard. ,this could be .5 of.log or more depending on the lab used. And the IS

by sandy craine (Mar 17)

Hi,
I am not sure as I have not read anywhere that there is a margin of error applicable to ALL q-PCR methodologies. They way I understand it is that labs can differ a lot in their methodologies so

by Kosmo126 (Mar 16)

I've read that the margin of error of the PCR reading is half log. I don't quite understand what this means. Do you know what it is as a ± figure? (i.e. 0.04 ± ?)
Thank you.
Category: Uncategorised

Replies: 2

Last updated: 17 March 2015
ece2108 on 15 March 2015

Category: Uncategorised

Replies: 3

Last updated: 17 March 2015

Nilotinib to Imatinib
by sandy craine (Mar 17)

Hi,

I understand why you would consider changing to a TKI that is more easily integrated into your daily routine- but, given you are highly motivated to optimal adherence, and you are seeing

by ece2108 (Mar 15)

Thank you for your quick response. No, I don't have any problems with my heart, but my doc. Is a big fan of Imatinib and says that for a longterm use Nilotinib is more dangerous. It is not the

by sandy craine (Mar 15)

Hi,

yes your doctor is right- there are no data regarding changing from imatinib (1st generation) to any one of the 2nd generation TKIs.
If you are responding well clinically to nilotinib

by ece2108 (Mar 15)

Hello everone, has anyone expirence to cange from Nilotinib to Imatinib? Is there a danger ? Or more side effects?
Category: Uncategorised

Replies: 3

Last updated: 17 March 2015
Olivia on 11 March 2015

Category: Uncategorised

Replies: 1

Last updated: 12 March 2015

Imatinib and the common cold
by vickiep (Mar 12)

Ditto!!

by Olivia (Mar 11)

Since I have been on imatinib - 5 years - each time I have caught a cold I have been much more tired and laid low by it, needing to spend at least one, sometimes two days in bed. I seem to have no
Category: Uncategorised

Replies: 1

Last updated: 12 March 2015
vickiep on 11 March 2015

Category: Uncategorised

Replies: 7

Last updated: 3 April 2015

Dasatinib v Bosutinib
by vickiep (Apr 3)

Thank you for this Sandy..I now feel more confident having this conversation with my Oncologist. Slight diversion here, so do say if I need to start a new thread. I am currently off sick...work in

by sandy craine (Mar 25)

Hi Vickie,
From some of the feedback from those on the DESTINY study, it looks like we can be pretty confident that a dose reduction does lessen side effects- however, this study cohort is at its

by vickiep (Mar 24)

Thank you Karen...as it happened, when the Oncologist rang me, I procrastinated and said we'd leave it a while. The thing is, I've been going through a lot of work-related stress and am now off sick

by karen (Mar 22)

I think if you had gastric issues on the others it is almost inevitable you will get them with Bosutinib! If you start low and build up you may avoid the worst of it though.

With weight I
Category: Uncategorised

Replies: 7

Last updated: 3 April 2015
ece2108 on 11 March 2015

Category: Uncategorised

Replies: 2

Last updated: 11 March 2015

Change from Tasigna
by ece2108 (Mar 11)

. Thank you Chris. This helps me to reconsider. I know that we are very lucky to have this drugs and if there was no other options, I wouldn't even considere a second to change. Have you heard about

by cdw5000 (Mar 11)

Hello,
I'm 37 and have been on Tasigna for 4.5 years now. My personal advice, which has been typically supported by my doctor, is to stick with Tasigna unless you really need to change. Although our

by ece2108 (Mar 11)

Hello, have been on your forum since 2013, when I got diagnosed with CML. 39 years old woman with 2 children, the sentence of the CML was very scaring. But Everything went well from the start on,
Category: Uncategorised

Replies: 2

Last updated: 11 March 2015
Dennis on 10 March 2015

Category: Uncategorised

Replies: 2

Last updated: 17 March 2015

Holiday insurance
by Dennis (Mar 17)

Glad I posted on here now. I had no idea that cover for CML was available at such a reasonable cost. Thanks.

by Steven Davies (Mar 13)

World first insurance covers cml. At a reasonable rate

by Dennis (Mar 10)

Hi peeps, with it becoming increasingly difficult to get any travel insurance at all unless we're prepared to pay extortionate prices, I've been searching around for a company which will still
Category: Uncategorised

Replies: 2

Last updated: 17 March 2015
johnw1001 on 16 April 2015

Category: Uncategorised

Replies: 2

Last updated: 16 April 2015

Skin thinning and increased sensitivity to sun after prolonged use of TKIs
by chrissie (Apr 16)

I have found I burn really easily now in the sun - even under an umbrella. I avoid sitting in the sun now and use factor 50 if outside in sunny weather. I also seem to operate at a higher

by David Fitz (Apr 16)

Hi John,
I spent 20 minutes out in the sun yesterday afternoon. Whilst I did not burn badly, I did get a couple of "red face" comments at work today. I've never been the bronzed Adonis, but I do

by johnw1001 (Apr 16)

Hi Sandy,

Have been on Glivec/Imatinib for over 8 years and now have gained complete molecular response so we are having PCRs every six months now which is good news.

I have an issue
Category: Uncategorised

Replies: 2

Last updated: 16 April 2015
Stephanie K on 25 February 2015

Category: Uncategorised

Replies: 5

Last updated: 3 March 2015

Skin Infections whilst on Nilotinib
by Stephanie K (Mar 3)

Hi Pennie
Thank you so much for taking the time to respond to me and for sharing your experience. I too am very sorry to hear that you have suffered with the skin problems.
We are trying to get an

by sandy craine (Mar 1)

Hi Pennie, sorry to hear you too are having skin/rash problems from nilotinib- but glad to hear your pcr is undetectable- that is worth celebrating. Now you have so many zeros, could you try to

by Pennie (Feb 27)

Hello Stephanie, Sorry your husband has skin problems on Nilotinib, I have terrible issues. My treatment centre is Kings College hospital London, and they are on top of the issues, and I regularly

by Stephanie K (Feb 26)

Hi Sandy,
Thanks so much for your response. It is reassuring to know that we aren't on the wrong track to think that the drugs could possibly be effecting Ian.
His PCR is below 0.1 and very
Category: Uncategorised

Replies: 5

Last updated: 3 March 2015
nigel on 27 February 2015

Category: Treating CML

Replies: 8

Last updated: 28 May 2015

DESTINY Trial - Asked to join
by darley (May 28)

I've just reported on one of the others that I've just had my month 8 tests and all remains absolutely spot on perfect.
Positive is that I've not had any cramps at all for over 3 months now. They

by nigel (May 28)

Month 2 of DESTINY completed, result back today 0.006, lowest yet, realise it is the same as last month in effect, but still nice to see a tiny fall, and no increase after 2 months 1/2 dose. What

by chrissie (May 6)

A great result, Nigel. The same thing happened to me. For 5+ years I'd also been around 0.03 -0.07 and then my first result on DESTINY half dose Imatinib was 0.008 -the lowest ever. After a wee

by sandy craine (May 6)

Hi Nigel, well I bet you weren't expecting and extra zero on a reduced dose? amazing news- congratulations.
Sandy
Category: Treating CML

Replies: 8

Last updated: 28 May 2015