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Rogue Wave Fan on 10 July 2013

Category: Uncategorised

Replies: 5

Last updated: 17 July 2013

new and discouraged
by David Fitz (Jul 17)

Hi Christine,
I'm so pleased to hear the bone pain has gone - that's awesome! For me it just wouldn't go, so I switched to dasatinib and that made it go away. The main thing is that it goes, and the

by Christine Wilson (Jul 15)

Hello, I am also newly diagnosed within the last month and just wanted to say what a fantastic site this is and I have received so much reassurance and support from other CML ers.

I would

by Steven Davies (Jul 14)

About 2 years ago I developed what's called geographic tongue which is extremely painful and also very sensitive.
I was put on a course of steroid mouth was and tablets and that cleared it up.
I

by sandy craine (Jul 12)

Hi,

So sorry to read that you are suffering side effects. You do not say when you were diagnosed but I assume it was quite recently- within 3 months?. Side effects from imatinib/Glivec (
Category: Uncategorised

Replies: 5

Last updated: 17 July 2013
chrissie on 3 July 2013

Category: Uncategorised

Replies: 2

Last updated: 5 July 2013

Hayfever
by chrissie (Jul 5)

Hi Sandy

Yes, so far so good.it was the most unpleasant experience, and considering last summer's wet and cold no one thought of hay fever. All under control so far this year thanks to tablets

by sandy craine (Jul 4)

Hi Chrissie,

It could be that as periorbital oedema is a common side effect of imatinib that you are more prone to reactions caused by allergens in the air- such as pollen? Just a guess really

by chrissie (Jul 3)

Hi All

Some of you may remember last summer I had a real problem with my sinuses/nose etc and managed to lose 20 lbs in weight as I was unable to chew and breathe, so chose to breathe. I felt
Category: Uncategorised

Replies: 2

Last updated: 5 July 2013
nigel on 2 July 2013

Category: Uncategorised

Replies: 2

Last updated: 3 July 2013

Update on Results
by sandy craine (Jul 3)

Really good news Nigel. You are absolutely right about the 'guidelines'... see discussion on this as Karen made the same point - see thread further down. My friend took 11 years to get to MR3.
At 0.

by Richard42 (Jul 2)

Excellent news Nigel. Best - Richard

by nigel (Jul 2)

Hi all, Pleased to say after a little blip few months ago and a rise in PCR from 0.4 to 0.6 then back to 0.4 again, we discussed changing from Imatinib with my consultant to Nilotinib, I don't
Category: Uncategorised

Replies: 2

Last updated: 3 July 2013
sandy craine on 2 July 2013

Category: Uncategorised

Replies: 15

Last updated: 11 July 2013

New Thread for Christine's Newly diagnosed post from 30th June 2013
by chrissie (Jul 11)

Hi Christine

I was dx in Sept 2009 and have been taking Imatinib 400mg since then. I have had a strange range of side effects over the years, but seeing my blood tests coming back showing mere

by Christine Wilson (Jul 10)

Hi Chrissie. The pains now are mainly concentrated around my knees and I am having trouble walking still, but at least it is lessening slowly, and hopefully next week my blood results will show

by chrissie (Jul 9)

Hi Christine
Pleased you're sticking with the 400mg dose and that the pain seems to be slightly better. It will all be worthwhile once you see improvements in your blood tests.

In my thoughts

by Christine Wilson (Jul 8)

Hi again, I just wanted to let you know that I have taken all of your advice and I am continuing to take imatinib every evening and not reducing the dose at all.

My bone pains have now changed
Category: Uncategorised

Replies: 15

Last updated: 11 July 2013
mario on 2 July 2013

Category: Uncategorised

Replies: 2

Last updated: 2 July 2013

my son pls help
by sandy craine (Jul 2)

Welcome Mario,

I am so sorry your son has been diagnosed with CML. It is heartbreaking for a parent.... but please be assured that he will respond to the therapy that is specifically for

by David Fitz (Jul 2)

Hi. I'm sorry to hear about your son.
Where do you live? - This is quite important!
Modern TKI therapy, such as imatinib (and to a lesser extent dasatinib and nilotinib) are commonly used as first-

by mario (Jul 2)

hello , i need help , my son/12 yo just diagnose with CML , june 26, after a blood test done by his doctor, his wbc 400t, what is the best treatment can be given to him ? pls help me .
Category: Uncategorised

Replies: 2

Last updated: 2 July 2013
sandy craine on 1 July 2013

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Replies: 5

Last updated: 2 July 2013

European LeukemiaNet recommendations for the management of chronic myeloid leukemia: 2013
by gizmos mum (Jul 2)

Hi Sandy, thanks for asking. I am doing much better on Nilotinib, the 1st BCR test after I changed to Nilotinib showed a big drop, but the one after was only 1.5% drop. I am still around 7.5% PCR at

by sandy craine (Jul 2)

Hi Julie,
ELNet- the European Leukaemia Network - include clinicians from the UK. So to answer your question, yes these recommendations will also be those of CML expert clinicians working in the UK

by sandy craine (Jul 2)

Karen, I have another CML friend who I have known since 2005. She has never has an optimal response on either imatinib or dasatinib. When she changed to nilotinib she responded better but very

by karen (Jul 1)

That is really interesting. I have never managed to hit any of these targets and have had suboptimal responses on four drugs so far but my consultant said recently that as my counts have never
Category: Uncategorised

Replies: 5

Last updated: 2 July 2013
Carol on 26 June 2013

Category: Uncategorised

Replies: 1

Last updated: 11 September 2013

Hammersmith Patient Carer Support Meeting Saturday 21st September 2013 - 10:30-1pm
by Steven Davies (Sep 11)

Hi

Just looking forward to seeing old friends and meeting new ones on Saturday week.

by Carol (Jun 26)

Next patient meeting at the Hammersmith Hospital
LEUKAEMIA PATIENT/CARER

SUPPORT MEETING
SATUDAY 21st September 2013

10.30AM/1.00PM
Haematology Outpatients clinic

Ground Floor
Category: Uncategorised

Replies: 1

Last updated: 11 September 2013
hannah2010 on 26 June 2013

Category: Uncategorised

Replies: 1

Last updated: 29 June 2013

phosphate
by blueyes74 (Jun 29)

they said that to me and gave me these god awful tablets. it turned out that my phosphate wasn't low. my vitamin D level was. after getting a blood test done i had it confirmed.

by hannah2010 (Jun 26)

Hannah again!

Im having an issue with my phosphate level being too low apparently the glivec causes it anyone else with this problem?

Thanks hannah
Category: Uncategorised

Replies: 1

Last updated: 29 June 2013
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