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hannah2010 on 26 June 2013

Category: Uncategorised

Replies: 1

Last updated: 29 June 2013

need help with numbers please
by sandy craine (Jun 29)

Hi Hannah, sorry no one else has answered but I will attempt to give you a view on your numbers.

The difference between your Feb and April results is one log- in other words there is one less

by hannah2010 (Jun 26)

Hi everyone

ok so been on glivec nearly three years

feb 2013 pcr was 0.001

April 2013 pcr was 0.015
Can anyone tell me the significance/ difference between these number i saw a
Category: Uncategorised

Replies: 1

Last updated: 29 June 2013
auditek82 on 26 June 2013

Category: Uncategorised

Replies: 1

Last updated: 29 June 2013

QTc interval on nilotinib
by sandy craine (Jun 29)

Hi, I would tend to agree with what you say your doctor has advised.
There is no evidence that you will exhaust your treatment options by switching drugs early on. The goal is to get you down as

by auditek82 (Jun 26)

I am on nilotinib 400mg twice daily after I did not manage to get 10% bcr-abl after 3 months on 400mg imatinib. I had a pcr of 21.9%. On the 13th of may I had a QTc of 423ms which is fairly good but
Category: Uncategorised

Replies: 1

Last updated: 29 June 2013
august1 on 19 June 2013

Category: Uncategorised

Replies: 11

Last updated: 5 July 2014

PCR at 9 months
by sandy craine (Jul 5)

It seems that imatinib does not have an adverse effect on sperm and so the clinical opinion is that males on treatment with imatinib can father children with only the same level of risk of

by ashu1103 (Jul 5)

hi sandy,

hope i am not irritating you,but my concerns are too much.

i have married six months back could you please tell me , that can i be the father on imatanibs or not? what

by sandy craine (Jul 4)

If your liver is standing up to the TKIs combined with alcohol then you may be lucky and get away without too much damage. Depends on how much you drink on a daily basis- ;o)
Best wishes,

by David Fitz (Jul 3)

Hi Bill,
I took omeprazole, a PPI similar to pantaprazole. Omeprazole significantly interacts with my TKI, dasatinib. But as far as I am aware imatinib doesn't require an acidic environment to be
Category: Uncategorised

Replies: 11

Last updated: 5 July 2014
Steven Davies on 18 June 2013

Category: Uncategorised

Replies: 3

Last updated: 21 June 2013

Change in dosage of Nilotinib
by Steven Davies (Jun 21)

Thank you.

Having had CML for 9 years I had not heard the term "wells" before.
The explanation is excellent and something that I think I understand. Whatever it is I'm in a good position will

by sandy craine (Jun 20)

Thanks for an excellent explanation Luisa. I too have had positive results since HH installed their very sensitive PCR methodology/machine last year. I too have been told that only 1 well was

by Luisa (Jun 20)

Hi Steven,
PCR is carried out in a so called "microtiter plate" that has 96, 384 or even 1536 sample wells arranged in a 2:3 rectangular matrix Each sample is put in a "well" (essentially like a

by Steven Davies (Jun 18)

Hi

10 weeks ago my consultant changed me from 600 to 400 mg 2 weeks ago my pcr was 0.022 up from 0.015. I know this is not a change in real terms however the consultant Said the following
"In
Category: Uncategorised

Replies: 3

Last updated: 21 June 2013
kathy on 13 June 2013

Category: Uncategorised

Replies: 1

Last updated: 14 June 2013

feeling unwell
by sandy craine (Jun 14)

Hi Kathy... it is OK to take paracetamol. The only caution is that you do not take it for long periods of time- i.e consistently. - but rather like you would normally, for headache, flu etc.

by kathy (Jun 13)

Hi all,not posted in ages,dx 03 taking glivec and im doing great,just a quick question ,feeling unwell tonight,sore throat ,high temp etc,am i ok to take paracetamol? thank you.xx
Category: Uncategorised

Replies: 1

Last updated: 14 June 2013
robert mcadie on 9 June 2013

Category: Uncategorised

Replies: 5

Last updated: 10 June 2013

supplementing with magnesium
by robert mcadie (Jun 10)

Thanks Sandy
I have managed to get the consultants email so will drop him a line. I wanted Robbie to start using the magnesium as you do. He was so sore over the weekend the pain seems to be growing

by gizmos mum (Jun 10)

Thanks Sandy, I will have a read. I did look at the multi vitamins in my local Boots, but they all had only 100mg in them, which I think is only 25% of what we need daily, so I will definitely try

by sandy craine (Jun 10)

Hi Julie,

You could try this link to a video which has a lot of information
http://nutritionalmagnesium.com/video-audio/magnesium-deficiency/92-magn...
I personally use Ancient Minerals cream

by gizmos mum (Jun 10)

Hi, I am very interested in this and have been reading about the benefits of Magnesium. I am on 800 mg Nilotinib too, what would be the suggested amount per day and in your opinion which would you
Category: Uncategorised

Replies: 5

Last updated: 10 June 2013
robert mcadie on 8 June 2013

Category: Uncategorised

Replies: 2

Last updated: 9 June 2013

nilotinib
by sandy craine (Jun 9)

Hi Robert, I entirely understand your concerns, however whilst nilotinib (and ponatinib) have some effects on cardiovascular system- as Pennie says, all TKIs have toxicity problems, it is just that

by Pennie (Jun 8)

Hi Robert I have been on Nilotinib now for more than 3 years. I was first diagnosed in 2001, and this is my 3rd TKI
They all have their problems, but if you are at a centre of excellence, and

by robert mcadie (Jun 8)

I have just started taking nilotinib on Tuesday while away at work. I have just returned home for the weekend and my wife has just read the package information leaflet and is really worried about
Category: Uncategorised

Replies: 2

Last updated: 9 June 2013
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