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Luisa on 7 June 2013

Category: Uncategorised

Replies: 3

Last updated: 11 June 2013

hair thinning - nilotinib
by sandy craine (Jun 11)

Hi Luisa,

I am interested that your stored iron levels are low.... you might be interested to read an article (link below) which gives an an easy to understand overview of iron levels, what is

by Luisa (Jun 9)

Hi Chris,
Thanks, that was what I was hoping to hear. I have been on nilotinib for only 3 months (although it feels like a lifetime already!)so I should really expect some side effects - I just

by cdw5000 (Jun 9)

Hello,
I'm sorry to hear you're having these problems. From my experience of 30+ months of tasigna, I find all the side effects to be cyclical. Some months my skin is better than others, sometimes

by Luisa (Jun 7)

Hi all
I have been on nilotinib since CML diagnosis 3 months ago. I tolerate it very well and apart from a few days of bone pain at the beginning , I have no major side effects. However, my hair has
Category: Uncategorised

Replies: 3

Last updated: 11 June 2013
sandy craine on 30 May 2013

Category: Uncategorised

Replies: 3

Last updated: 31 May 2013

Bosutinib: Good news for CML patients in England
by sandy craine (May 31)

Hi Chris and Karen,

just to be clear NICE have not yet appraised bosutinib- we are due to attend the appraisal committee meeting on June 13th, unless it is delayed for some reason.
The CDF in

by karen (May 31)

Great news, the more options people have the better. It will be interesting to see if Ponatinib makes it onto the list in the near future as well.
K

by cdw5000 (May 30)

That is another excellent addition to the TKI arsenal and great news for all CML patients. Well done Prof Apperley for championing the drug and helping get it through NICE.
Looking forward, all we

by sandy craine (May 30)

Good news for CML patients in England
On Tuesday this week the NHS announced that bosutinib is to be made accessible to CML patients via the Cancer Drugs Fund (CDF).

There are a total of six
Category: Uncategorised

Replies: 3

Last updated: 31 May 2013
sandy craine on 25 May 2013

Category: Uncategorised

Replies: 2

Last updated: 27 May 2013

CML Horizons 11th International Conf. 3rd-5th May 2013
by pat preston (May 27)

Yes, thanks for this Sandy. What a great conference it must have been. The comments and research from all corners of the globe about quality of life issues on individual drugs were of particular

by teddyb (May 26)

Great information there, thank you.

by sandy craine (May 25)

Some of you might like to take a look at the videos taken of some presentations at the Prague conf.

Sandy
CML Horizons 2013, the 11th annual international conference for organizations
Category: Uncategorised

Replies: 2

Last updated: 27 May 2013
David Fitz on 16 May 2013

Category: Uncategorised

Replies: 3

Last updated: 18 May 2013

Sore joints - urea serum related
by sandy craine (May 18)

I am not sure at all that you would need to stay on allopurinol for a 'long time'. When I was started on imatinib I was given allopurinol to cope with the high number of cell die off in the marrow.

by Luisa (May 17)

Hi David,
I was diagnosed with CML less than 3 months ago.I started on imatinib but switched to nilotinib after a week. I was also prescribed allopurinol but only for the first month, while there

by Sarah Bo (May 16)

Hi David,
Sorry, I can't help with your question but I just wanted to say congratulations on the PCR results - 76% - 4% is a massive drop.

Hope you manange to sort the joints out soon!
Sarah.

by David Fitz (May 16)

Hi all,
Sorry for posting, yet again, with a minor ailment complaint - but I reckon everyone here is in probably the best place to advise me :-)
I started on dasatinib 10 weeks ago, after switching
Category: Uncategorised

Replies: 3

Last updated: 18 May 2013
Steven Davies on 15 May 2013

Category: Uncategorised

Replies: 1

Last updated: 17 May 2013

A new book called "The Philadelphia Chromosome"
by Olivia (May 17)

My copy arrived today. Very interesting but I agree that it can be hard going in parts. My last science lesson was in 1958!

by Steven Davies (May 15)

I have just started reading the above book by Jessica Wapner which has just been published this month.

So far so good but some of the reading is hard going at times. It's the story of Ph1
Category: Uncategorised

Replies: 1

Last updated: 17 May 2013
smurfy on 15 May 2013

Category: Uncategorised

Replies: 2

Last updated: 23 May 2013

Mini transplant
by tyronlandon (May 23)

It is really sad to hear these are you taking good treatment.

by smurfy (May 15)

june aft open.lol.my touch screen playing up!

by smurfy (May 15)

I was diax may 2012 with cml,fibrosis and monosomy 7.As like most of you went in through a and e because of enlarged spleen.Gp visits prior were diax as sinusitis ,lock jaw ,nasal allergy,hip bone
Category: Uncategorised

Replies: 2

Last updated: 23 May 2013
Phil Poole on 14 May 2013

Category: Uncategorised

Replies: 8

Last updated: 18 May 2013

Imatinib to Dasatinib & the Side Effects.
by sandy craine (May 18)

If you get a drug through the CDF you will be guaranteed access to that drug for as long as you need it. The CDF in its present form will end at the end March 2014, but it is very probable that a

by Phil Poole (May 18)

Hopefully your Consultant will reassure you & come up with a plan Jeff. I have been in stable remission for some time, so he wasn't concerned to suggest a lower Dasatinib dose to reduce the new

by JeffMowatt (May 17)

Hi Phil,
At my current does of 800mg I think the risk is over 6% My concern was that I'd reported side effects that could indicate Atherosclerois. On the Facebook group I also mention receding gums

by Phil Poole (May 16)

Hi Jeff,
He seemed to be concerned because of my age(53)& that this would/should mean that I would have to take Nilotinib for many years & thus increase the risk. More experience with
Category: Uncategorised

Replies: 8

Last updated: 18 May 2013
skiinglaketahoe on 13 May 2013

Category: Uncategorised

Replies: 1

Last updated: 13 May 2013

CML drug and Alzheimer's disease
by Luisa (May 13)

I would be very cautious about information appearing on websites like this, unless is backed up by proper research published in reputable medical journals

by skiinglaketahoe (May 13)

http://www.examiner.com/article/leukemia-drug-may-benefit-parkinson-s-al...
This sounds very interesting

Susan
Category: Uncategorised

Replies: 1

Last updated: 13 May 2013
JeffMowatt on 12 May 2013

Category: Uncategorised

Replies: 6

Last updated: 6 March 2014

Concerns about Atherosclerosis and nilotinib
by CanMakeLightofit (Mar 6)

The original question on this thread mentioned loss of libido as a symptom. My partner experienced this not long after he switched from imatinib to nilotinib.
A bit of online research showed that

by sandy craine (Jun 26)

Interesting article which underscores the latest batch of research that is taking cholesterol off the 'naughty step'.

Sandy
"Oxidized fats contribute to heart disease (and sudden death from

by JeffMowatt (Jun 24)

Thanks for the info Sandy,
By was of an anecdote. It's interesting to recall that a friend working as a heart technician, a lady of Indian origins, had made the connection between Vitamin D

by sandy craine (Jun 23)

Jeff,

I understand that various CML clinicians are seeing more serious long term side effects with

2G TKIs- particularly the cardiac effects cited in the articles you have provided links
Category: Uncategorised

Replies: 6

Last updated: 6 March 2014
pat preston on 12 May 2013

Category: Uncategorised

Replies: 1

Last updated: 12 May 2013

PCR surprise
by sandy craine (May 12)

Hi Pat,
Given that your molecular response to 600mg is so good.... even your 'higher' result 3 months ago is at MR4 and was probably more to do with the test sample rather than your actual levels

by pat preston (May 12)

I never cease to be amazed - my PCR has just come back at o.oo3 again having wobbled up to o.o15 three months ago. As I have been taking Glivec for 12 years one would think I would have got
Category: Uncategorised

Replies: 1

Last updated: 12 May 2013
Luisa on 8 May 2013

Category: Uncategorised

Replies: 6

Last updated: 14 May 2013

Nilotinib and potassium
by Luisa (May 14)

Hi Sandy,

Fair enough comment on your part - apologies - no offence intended. I still think Dr Sircus's website is very misleading but from now on I'll keep my opinions to myself.
Regards

by sandy craine (May 14)

Luisa, it is entirely up to the individual to accept or reject information such as that on sites such as Dr. Sircus and others. There are plenty of links on this and other sites that are based on '

by Luisa (May 13)

Not so sure about all that blurb about Mg, being almost the cause of every known disease, etc. It sounds to me like a ploy to get people to buy whatever Mg supplement he sells. Sodium bicarbonate(

by sandy craine (May 12)

I Luisa,
You might like to take a look at the following link- one of many resources about Magnesium deficiency etc. but an 'easy' read.
I prefer to use the transdermal method of supplementing with
Category: Uncategorised

Replies: 6

Last updated: 14 May 2013
sandy craine on 8 May 2013

Category: Uncategorised

Replies: 3

Last updated: 9 May 2013

The Philadelphia Chromosome
by sandy craine (May 9)

Sarah, that was quick! I ordered mine yesterday so will have to wait a while for delivery.
Sandy

by Sarah Bo (May 8)

I have just started reading this book - it's very interesting so far.

by David Fitz (May 8)

Just ordered! Only 1 left on Amazon, now. I'm sure they'll get more stock soon.

by sandy craine (May 8)

I have been looking forward to the launch of this book. It tells 'our' story.
"The Philadelphia Chromosome relates the backstory—never before told at book length—behind many of those headlines.
Category: Uncategorised

Replies: 3

Last updated: 9 May 2013
Steven Davies on 7 May 2013

Category: Uncategorised

Replies: 1

Last updated: 8 May 2013

PCR Result.
by sandy craine (May 8)

dear Steven,

congratulations on your PCR which- if it were on the IS would be equivalent to a 4 log reduction. Given that it is the HH test then you can be confident that it is pretty low and

by Steven Davies (May 7)

Hi

Had my latest PCR results today and its 0.015 on 600 mg Nilotinib. Im trying a lower dose of 400mg once a day and will know the results in June. Keeping my fingers crossed that i will see
Category: Uncategorised

Replies: 1

Last updated: 8 May 2013
tartancaddy on 4 May 2013

Category: Uncategorised

Replies: 5

Last updated: 7 May 2013

Moving from England to Scotland
by sandy craine (May 7)

Hi Gary... because of issues with data protection we do not share our members email addresses online- However, I did sent you a message with Olivia's email address. take a look in your spam box if

by tartancaddy (May 7)

Thanks for all your kind help guys, i'll ask my GP to refer me here then. Maybe bump into you guys at the clinic one day then!
Olivia, i couldn't get your email address as the site blocked it for

by AnnieKennedy (May 4)

I too see Dr Maung every 6 months or so at a Thursday clinic - the staff are great and the set-up is very efficient in my experience. No concerns at all about funding and in fact they are happy to

by Olivia (May 4)

Hi
I am treated by Dr Maung at the Western General. He has general clinics on a Thursday, but if you are on a clinical trial (as I am), the day is Tuesday. There shouldn't be any problems at all
Category: Uncategorised

Replies: 5

Last updated: 7 May 2013
Olivia on 27 April 2013

Category: Uncategorised

Replies: 5

Last updated: 30 April 2013

Glivec and "silent migraine"
by Janet (Apr 30)

I've had the opposite - frequent migraine throughout my adult life, stopping immediately after starting imatinib. I'm now nearly 7 years down the line, and haven't had an attack in all this time.

by Olivia (Apr 30)

Thanks for all this, everyone. I have no idea what the trigger for the migraines might be - they are so infrequent that I don't think there can be any one cause. I saw a painting done by a

by sandy craine (Apr 29)

I also suffered from migraine from about the age of 15. I found that acupuncture 'cured' me and was migraine free until just before diagnosis when I started to experience 'silent migraines - visual

by karen (Apr 27)

I have had migraines since i was about 11 but whilst on Glivec i had none and again now on Ponatinib i have been migraine free. I did mention this once at an appt and apparently a few people have
Category: Uncategorised

Replies: 5

Last updated: 30 April 2013
sandy craine on 26 April 2013

Category: Uncategorised

Replies: 1

Last updated: 13 May 2013

Doctors Denounce Cancer Drug Prices of $100,000 a Year- NYT article
by JeffMowatt (May 13)

This was something I wrote about too, in February when the patent case in India reached the news. If the good doctor and I are both blacklisted, I may be more vulnerable.
http://www.p-ced.com/1/node

by sandy craine (Apr 26)

With the cost of some life-saving cancer drugs exceeding $100,000 a year, more than 100 influential cancer specialists from around the world have taken the unusual step of banding together in hopes
Category: Uncategorised

Replies: 1

Last updated: 13 May 2013
tartancaddy on 25 April 2013

Category: Uncategorised

Replies: 4

Last updated: 27 April 2013

energy levels
by tartancaddy (Apr 27)

Hi guys
thanks for your helpful comments. Sandy, i'll have a look at your supplement suggestions.
An update on Feroglobin - it tastes horrific and really affects my stomach so in addition to the

by cdw5000 (Apr 27)

Just noticed my appalling spelling of wear, not 'ware' - putting that down to some tasigna brain fog

by sandy craine (Apr 26)

Hi Gary..... as Chris says, its impressive that you manage to keep up the pace! I see no problem with taking supplements like B vitamins Zinc etc. I would add though that you should not just take

by cdw5000 (Apr 25)

Mate, I'm impressed you do the job you do. Walking 18 with a push-cart wares me out. Have you tried berocca?
Chris
Category: Uncategorised

Replies: 4

Last updated: 27 April 2013
gizmos mum on 22 April 2013

Category: Uncategorised

Replies: 2

Last updated: 23 April 2013

Good result on Nilotinib
by gizmos mum (Apr 23)

Thanks, yes relieved and happy. I am already back on 800g and have been for about 3 weeks, but the last blood was taken when I was still on reduced dose, so possibly even bigger drop next time with

by sandy craine (Apr 23)

What a great result- you must be very relieved (and happy). Will you stay on the reduced dose?
Best... Sandy

by gizmos mum (Apr 22)

6 weeks ago I changed from 400g Imatinib to 800 g Nilotinib as I had stopped responding (resistance) and my 10 months PCR since diagnosis had gone up to 28%. I am happy to say that despite a
Category: Uncategorised

Replies: 2

Last updated: 23 April 2013
Steven Davies on 21 April 2013

Category: Uncategorised

Replies: 4

Last updated: 23 April 2013

Jeanine in the London Marathon
by chrissie (Apr 23)

A wonderful achievement, Jeanine. Well done and many thanks,

Chrissie

by David Fitz (Apr 22)

Congratulations, and thank you Jeanine!

by gizmos mum (Apr 22)

Well done to Jeanine, I was there watching it and although I did not see Jeanine, all the runners were brilliant and must be very proud

. That is a fantastic amount to raise - well done

by sandy craine (Apr 22)

Jeanine did so well and exceed her target by 18%
She has raised £1,771.00 for CMLS Group which will be put towards a special education day for patients later this year.... if I can persuade the
Category: Uncategorised

Replies: 4

Last updated: 23 April 2013
sandy craine on 17 April 2013

Category: Uncategorised

Replies: 3

Last updated: 18 April 2013

Vitamin D improves muscle function
by sandy craine (Apr 18)

Hannah, you are obviously worried but please try not to. 2n gen TKIs are equally effective in targeting the BCR-ABL gene. The difference is only in the side effect profile of each and in the

by Hannah (Apr 17)

HI,please anyone explain that

article. http://www.nature.com/leu/journal/v27/n4/abs/leu2012348a.html. does it mean dasatinib better or worse than imatinib or nilotinib?thx

by David Fitz (Apr 17)

From a BBC article:
"Pilot studies and regional monitoring suggests that vitamin D deficiency is likely to affect at least half the UK's white population, up to 90% of the multi-ethnic population

by sandy craine (Apr 17)

Vitamin D improves muscle function
April 8, 2013. The March, 2013 issue of The Journal of Clinical Endocrinology & Metabolism reports the finding of researchers at Newcastle University in
Category: Uncategorised

Replies: 3

Last updated: 18 April 2013