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irenekallison on 8 February 2013

Category: Uncategorised

Replies: 4

Last updated: 9 February 2013

Spa Treatment
by irenekallison (Feb 9)

Much appreciate all comments, WILL enjoy it all the more now!

Irene

by sandy craine (Feb 9)

I absolutely agree with Rod and Chris have said, enjoy your spa day and forget CML for a while.

Sandy

by cdw5000 (Feb 9)

What Rod said. I'm on Tasigna and have had multiple trips to the spa over the last few years. I initially declared it and now I don't even bother for the same reasons Rod identified. They are more

by RodM (Feb 9)

Hi
Yes, been there. I simply didn't declare it. My view was that if you don't declare it, then they're absolved of liability if there were to be a problem because it wasn't made known to them.
Category: Uncategorised

Replies: 4

Last updated: 9 February 2013
joe m on 7 February 2013

Category: Uncategorised

Replies: 5

Last updated: 9 February 2013

Change the time while taking Nilotinib.
by joe m (Feb 9)

Thanks to everyone for the great advice. All the very best to you all. Joe.

by joe m (Feb 9)

Thanks very much Sandy. I appreciate your help. Kindest regards to you. Joe.

by HAYLEY88 (Feb 8)

Hello Joe,
I recently asked my consultant at Hammersmith Hosp re changing my time from 3am and 3pm to 12 noon and 12 midnight. Advise was as follows:
Just change immediately , don’t worry about

by sandy craine (Feb 8)

Hi Joe, Chris has given some sound advice on how you might approach the change in timings.

I contacted novartis for their advice and received the following replay from their EU medical lead:
"
Category: Uncategorised

Replies: 5

Last updated: 9 February 2013
curlysue on 5 February 2013

Category: Uncategorised

Replies: 1

Last updated: 6 February 2013

Hi
by sandy craine (Feb 6)

Hi Sue,

regarding the rash- please see discussion thread below about this side effect of nilotinib, there is some good advice from people who are currently treated with this TKI.
As to your

by curlysue (Feb 5)

Hello all
Am new to this site - although I have had CML since 2006. Have just had my medication changed from 400mg Imatinib daily to 400mg Nilotinib twice daily as the imatinib has stopped working
Category: Uncategorised

Replies: 1

Last updated: 6 February 2013
ni2i on 4 February 2013

Category: Uncategorised

Replies: 1

Last updated: 4 February 2013

Over the moon
by sandy craine (Feb 4)

Dear Naomii, this is wonderful news for you, well done. You have responded so well since changing to 2nd gen TKI.
Ver best wishes,

Sandy

by ni2i (Feb 4)

Well I got my results today and I am made up I am now at 0.036% it's taken a while to get here but I'm finally here. I was 100% at dx in feb 2011 so I know have my log reduction that I so
Category: Uncategorised

Replies: 1

Last updated: 4 February 2013
francineb on 31 January 2013

Category: Uncategorised

Replies: 7

Last updated: 5 February 2013

What should I do?
by francineb (Feb 5)

Thank you so much Sandy!

by francineb (Feb 5)

Thank you so much for the response. I really wish men embodied the qualities that females have. I will let him know that I do understand that it may be hard for him and try to hear him out. I will

by chrissie (Feb 2)

Yes, it is exactly the same with mine, Rod.It used to upset me a little, but now I understand their difficulty. I guess we as CMLers kind of underestimate how our families are feeling or trying to

by sandy craine (Feb 2)

The only thing I can add to all the comments so far is that a diagnosis of CML (or any life-threatening disease) does not only affect the person diagnosed- but rather everyone that is involved in
Category: Uncategorised

Replies: 7

Last updated: 5 February 2013
teddyb on 30 January 2013

Category: Uncategorised

Replies: 5

Last updated: 31 January 2013

9 month results are in.
by teddyb (Jan 31)

Thank you Lindsey!
Yes indeed, i opened a bottle of red :)

by Lyndsey (Jan 30)

Hi

Just wanted to congratulate you on an amazing response. Something to celebrate tonight!

Lynne

by Lyndsey (Jan 30)

Hi

Just wanted to congratulate you on an amazing response. Something to celebrate tonight!

Lynne

by teddyb (Jan 30)

Thank you Sandy :)
Category: Uncategorised

Replies: 5

Last updated: 31 January 2013
ni2i on 28 January 2013

Category: Uncategorised

Replies: 3

Last updated: 5 February 2013

Rash
by fehr (Feb 5)

In the first year of my treatment with Imatinib, I came out with really bad rash all over the place - cracked and bleeding. It has since subsided, but my GP suggested Doublebase cream and it works

by cdw5000 (Jan 29)

Per what sandy said, a rash is quite normal on tasigna. My skin has changed significantly but on the whole has settled to a manageable level. My advice would be to use some E45 and see how it goes.

by sandy craine (Jan 29)

Although I do not have personal experience of 2nd gen TKIs, I think this is a common side effect of nilotinib- although ponatinib also has rash in its list of side effects but I am not sure whether

by ni2i (Jan 28)

Hi all
Hope you are all well. I have been on nilotinib now since July and feel well however I have suddenly developed a raised red rash on my back should I be worries or go to the docs
Thanks x
Category: Uncategorised

Replies: 3

Last updated: 5 February 2013
Mo on 26 January 2013

Category: Uncategorised

Replies: 2

Last updated: 27 January 2013

Calcium tablets
by Mo (Jan 27)

Hi Sandy thank you for getting back to me will take a look at the links, also have a chat with the Dr at HH.
Take care
Mo.

by sandy craine (Jan 26)

Hi Mo, I think that there is a possible contraindication with taking calcium tabs at the same time as, or near to, taking your TKI. If you are taking chewable calcium that is probably in the form

by Mo (Jan 26)

Hi to you all
I was given Chewable Calcium Tablets but looking at some older posts it say's not to take,when at my local

Hospital Iasked about it and was told they had not heard of this,
Category: Uncategorised

Replies: 2

Last updated: 27 January 2013
tony morgan on 25 January 2013

Category: Uncategorised

Replies: 2

Last updated: 26 January 2013

PcR results
by tony morgan (Jan 26)

Thanks for your reply sandy,don't think my balance is a result of imatinib because it started just before treatment,however the shortness of breath slured speech,puffy eyes an cramp, all this I can

by sandy craine (Jan 25)

Hi Tony, from what I can make out your latest pcr is: 0.00001? Well the machine they are using must be pretty sensitive (maybe Hammersmith?)- 4 zeros after the decimal point is pretty impressive.

by tony morgan (Jan 25)

Hi sandy just revived PcR result ,not sure the exact figure just got graph through post.graph has level of BCR/ABL 1 normalised to ABL1 written along the top,down left hand side of graph 10, 1, 0.1
Category: Uncategorised

Replies: 2

Last updated: 26 January 2013
karen on 25 January 2013

Category: Uncategorised

Replies: 2

Last updated: 26 January 2013

Concerns
by karen (Jan 26)

Hi Sandy

I will certainly get that checked on Monday. The 1.2 was a one off, mostly i am between 1.5 and 4.5 so not really in the 'safe' zone.

Hope to see you at the Kings meeting on

by sandy craine (Jan 25)

Dear Karen,

I am sorry to hear your response to ponatinib has not been as good as hoped. 1.2 is a complete cytogenetic response (1.5) but I agree you would want to see MR... at least 3 log (0

by karen (Jan 25)

I have just found out that Ponatinib (at the current dose) is not making the difference to my counts that we hoped it would and the consultants are considering upping the dosage to see if that helps
Category: Uncategorised

Replies: 2

Last updated: 26 January 2013
Basil from RSA on 24 January 2013

Category: Uncategorised

Replies: 1

Last updated: 24 January 2013

Great News
by sandy craine (Jan 24)

Dear Basil... what great and wonderful news. Many congratulations on this continued success on your intrepid journey in to the unknown world of STIM! I am so pleased to hear your latest numbers....

by Basil from RSA (Jan 24)

Hi Guys and Dolls. I would just like to share some great news. I have just received the results of my Jan 21st PCR. After 45 months off Gleevec my test came back "BCR-ABL 9 - 22 Undetected". The
Category: Uncategorised

Replies: 1

Last updated: 24 January 2013
Katedunn on 23 January 2013

Category: Uncategorised

Replies: 3

Last updated: 28 January 2013

MMR will it ever happen?
by Katedunn (Jan 28)

Thanks so much for your encouragement Sandy and Teddy. Had a look at the stats on that site, very interesting. Lets hope slow and steady downward trend will continue. I'll be sure to post on the

by sandy craine (Jan 23)

Hi Kate,

First let me say that I do understand why you feel frustrated- especially as you want another baby, your journey to MMR must seem slow! But, I agree with Teddy, you are showing a

by teddyb (Jan 23)

Sometimes it can take a while for the tki gets the patients to MMR.
Here are some statistics: http://community.lls.org/thread/11781
Seeing you had 2 tests at around 50, then a drop to 16/19, then 12

by Katedunn (Jan 23)

Hi all,

I'm interested to hear from others who may have taken a while to reach MMR.

I've been taking part in a trial for over 2 years now(diagnosed Sept 2010.)

Started on Glivec
Category: Uncategorised

Replies: 3

Last updated: 28 January 2013
Jemma Webb on 21 January 2013

Category: Uncategorised

Replies: 1

Last updated: 22 January 2013

CML Pregnancy!!
by sandy craine (Jan 22)

Hi Jemma,

Thanks for sharing your story. It is very uplifting to hear about your experience, especially being pregnant at diagnosis. It is wonderful that you were supported by both your GP and

by Jemma Webb (Jan 21)

My name is Jemma, I'm 29 years old. I was diagnosed with cml at 6wks pregnant with our now 3year old twin boys. I was advised by my specialist to terminate but I refused and with the support of my G
Category: Uncategorised

Replies: 1

Last updated: 22 January 2013
gizmos mum on 20 January 2013

Category: Uncategorised

Replies: 3

Last updated: 22 January 2013

Opting out of drug trial
by gizmos mum (Jan 22)

Hi Sandy and teddyb
Thank you both for your replies. At the moment i feel a bit fed up with it, I will discuss at my next appointment as Sandy sugggests but I think I will have to wait for the year

by sandy craine (Jan 21)

Hi, I understand why you are tempted to leave the SPIRIT 2 trial. I have looked at the primary endpoint of the trial and that is PFS (progression free survival) at 5 years. However, there is a point

by teddyb (Jan 20)

Hello gizmos mum.
If im reading correctly, you have had CML 9 months (Same as me) and have been on the Spirit 2 drug trial since you were diagnosed?

What was your PH+(Cytogenetics) and PCR at

by gizmos mum (Jan 20)

Hi, i was wondering if anyone has opted out of the Spirit 2 drug trial? I am currently 9 months in to the trial,and dissapointed at my rather slow response to Imatinib. (currently 20% PH+ and 17%
Category: Uncategorised

Replies: 3

Last updated: 22 January 2013
cdw5000 on 8 January 2013

Category: Uncategorised

Replies: 2

Last updated: 8 January 2013

CML in the Daily Express
by Sarah Bo (Jan 8)

Hi Chris,

What a great story. I work in Bristol, am 36, and was only diagnosed a few weeks ago. I had previously been very fit and healthy so it was a huge shock.

Like you, I initially

by sandy craine (Jan 8)

Hi Chris.... thanks for posting the DT article link here. I have just read it and found your story both moving and very familiar. Your 'dark humour' has really cheered me up - I don't often get to

by cdw5000 (Jan 8)

Hello all,
My CML story is in the Daily Express today in the health section. Not Narcissistic, just trying to raise the profile of CML and the TKIs.
http://www.express.co.uk/features/view/369284/
Category: Uncategorised

Replies: 2

Last updated: 8 January 2013
tony morgan on 20 January 2013

Category: Uncategorised

Replies: 2

Last updated: 22 January 2013

Sensitive skin
by tony morgan (Jan 22)

Thanks for that sandy rash been with me for two weeks , but straight after posting,it disappeared .will make appointment to see doctors .all the best tony.

by sandy craine (Jan 20)

Hi Tony, maybe you have shingles? I would definitely check this with your doctor.

Sandy

by tony morgan (Jan 20)

Hello all,just like to ask if anyone as had sensitive skin,I've had a slight rash from the front of my chest round my side to my back,hurts to the touch .keep well tony.
Category: Uncategorised

Replies: 2

Last updated: 22 January 2013
sandy craine on 18 January 2013

Category: Uncategorised

Replies: 5

Last updated: 31 January 2013

CMLS Group Response to: BBC Scotland Investigates 2013: Life Death and Enormous Amounts of Money
by sandy craine (Jan 31)

Hi Rod,

thanks for sharing your response the content of which is more or less the same as we all received I think, and entirely predictable. However, I believe that it was worth complaining

by RodM (Jan 30)

Dear ,

Thank you very much for the feedback regarding the BBC Scotland Investigates programme "Life, Drugs & Enormous Amounts of Money".
It was definitely not the programme makers’

by sandy craine (Jan 25)

See below for the response from the BBC re: CMLSGROUP complaint. As you might expect it is a pretty weak attempt on his part to support the basic message of the programme and in my opinion he could

by RodM (Jan 19)

I have also written my own complaint, having watched the program on Iplayer. The report was biased, unbalanced and very poorly put together.
Rod
Category: Uncategorised

Replies: 5

Last updated: 31 January 2013
Stuart Johnston on 16 January 2013

Category: Uncategorised

Replies: 6

Last updated: 17 January 2013

TV DOCUMENTARY ON BBC 1 SCOTLAND TONIGHT 16TH JAN at 10.35pm channel 951 (sky)
by sandy craine (Jan 17)

I absolutely agree with all you have said. I believe so strongly in the value of the NHS- which was/is based on social solidarity... something for which Britain should be admired.

I am

by sandy craine (Jan 17)

Hi Stuart, yes I do have her contact..... she works directly for BBC Scotland rather than as an independent producer!

I will send it to your private email address.
I too will write a letter-

by nigel (Jan 17)

What i felt was a real shame was the fact they did not mention Glivec comes off Patent in a couple of years and so will fall by some +80% in all likely hood. Drugs companies need to recover their R+

by Stuart Johnston (Jan 17)

Hi Sandy.

I agree with what you say and am annoyed in the way that the BBC portrayed us.

I found the documentary very biased and did not reflect fully on the interviews we gave or the
Category: Uncategorised

Replies: 6

Last updated: 17 January 2013
HAYLEY88 on 13 January 2013

Category: Uncategorised

Replies: 1

Last updated: 13 January 2013

Nilotinib Timings
by sandy craine (Jan 13)

Hi Hayley,

Good to hear the nilotinib has reduced your bcr/abl levels so effectively.

Given that keeping a TKi at a constant (plasma) level is essential to take your drug consistently

by HAYLEY88 (Jan 13)

I was diagnosed in Nov 2010, after 20 months on imatinib my PCR was still at 5% so I was changed to nilotinib. I am delighted to report that after 4 months my PCR is down to 0.417% .Having to fast
Category: Uncategorised

Replies: 1

Last updated: 13 January 2013
sandy craine on 13 January 2013

Category: Uncategorised

Replies: 2

Last updated: 14 January 2013

Tony
by Olivia (Jan 14)

I have had occasional spells of light-headedness, whoch I put down to being on Lisinopril for raised blood pressure. Never very bad, but you have made me wonder whether imatinib is to blame.

by tony morgan (Jan 13)

Hi sandy, thank you for taking the time to reply ,only sent it to you Friday been look anxiously for your reply again thanks .Well you have made my a lot happier with the situation ,can't tell you

by sandy craine (Jan 13)

Submitted by tony morgan on Fri, 11/01/2013 - 21:57.
Hi sandy reading the forum tonight reminded me of Glasgow ,was very nice to meet you and your partner,tried to fine your e mail address ', just
Category: Uncategorised

Replies: 2

Last updated: 14 January 2013