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pat preston on 27 February 2013

Category: Uncategorised

Replies: 5

Last updated: 2 March 2013

Long term use of Imatinib
by sandy craine (Mar 2)

Hi Pat... please send your current email address to me at cmlsupportgroup@gmail.com
Thanks,

Sandy

by sandy craine (Mar 2)

Pennie... yes, I have sent you and pat an email.

Sandy

by Pennie (Mar 2)

Hi Pat,

Oh the old days!! Havent we CMLers come a long long way on this journey. I am now on Nilotinib, and doing well. Please contact me direct if you want more of my personal experience

by pat preston (Mar 1)

Dear Sandy, Yes your information is valuable to me and makes me feel stronger already. My PCR's are still low but they are slowly changing upwards. They have been at 0.000 since 2005 when I began
Category: Uncategorised

Replies: 5

Last updated: 2 March 2013
sandy craine on 26 February 2013

Category: Uncategorised

Replies: 2

Last updated: 27 February 2013

Lottie Dothu
by sandy craine (Feb 27)

http://www.meaningfulfunerals.net/fh/obituaries/obituary.cfm?o_id=198298...

by Bee (Feb 26)

Ted and I corresponded with Lottie by e-mail for the last ten years. She was a bright, inspirational woman who had many other health issues apart from her CML, but always had a story to tell....I

by sandy craine (Feb 26)

This is a message from Pat Elliot about the death of Lottie. I promised Barbara Meunier that I would post the news here as some of you knew Dottie and might not have heard this news. She had several
Category: Uncategorised

Replies: 2

Last updated: 27 February 2013
sandy craine on 25 February 2013

Category: Uncategorised

Replies: 1

Last updated: 2 April 2013

EBMT 2013- Patient and Family Day
by sandy craine (Apr 2)

Twenty-one years ago, Telegraph readers raised £40,000 for Victoria Nikishina’s bone marrow transplant. She's never forgotten their generosity
http://www.telegraph.co.uk/health/9962161/Transplant-

by sandy craine (Feb 25)

As you know the EBMT 2013 meeting is almost upon us and with that the Patient and Family Day on Saturday 6th April 2013 09.30 am - 6.00 pm The Mermaid Theatre, Puddle Dock Blackfriars, London EC4V
Category: Uncategorised

Replies: 1

Last updated: 2 April 2013
RodM on 21 February 2013

Category: Uncategorised

Replies: 4

Last updated: 13 March 2013

Eye irritation / Blepharitis
by RodM (Mar 13)

Thanks for the comments, it's helpful to hear I'm not the only one!
I've also noticed slightly drooping skin around my eyebrows, which are falling a little over my eyelid! It would be better if it

by johnw1001 (Mar 13)

Hi Rod

According to the list of side effects of TKIs some eye disorders are quite common .Have been taking imatinib for six years now and always have puffy eyes with eyelid odema or swelling.

by sandy craine (Feb 23)

Hi Rod and Chris,

I have had symptoms of sore eyes/itching/redness etc. when I was taking imatinib but as I no longer need to take a TKI I suffer less.
I always use a natural remedy to bathe

by cdw5000 (Feb 23)

Hi Rod,
i've had some eye issues while on Tasigna. I've had several styes (sp?) and also my eyes look permanently blood shot with reddened eyelids. I also have a strange skin condition from Tasigna
Category: Uncategorised

Replies: 4

Last updated: 13 March 2013
stevebroom on 20 February 2013

Category: Uncategorised

Replies: 3

Last updated: 9 March 2013

Destiny Trial
by stevebroom (Mar 9)

Thanks for the update.

Steve

by sandy craine (Mar 4)

I have just heard from Prof.Clark that they are still waiting for LLR to meet and confirm that the questions they had have been answered to their satisfaction. The next LLR panel meeting is on March

by sandy craine (Feb 20)

No news as yet on either Destiny or SPIRIT 3. Hopefully we will hear soon, but I imagine they are still having Ethics/funding problems. I will ask again,
Sandy

by stevebroom (Feb 20)

Hi there, Iwas wondering if there was any news about the possible Destiny trial that I read a little about in the summary of the Glasgow patient seminar?
Category: Uncategorised

Replies: 3

Last updated: 9 March 2013
angela on 19 February 2013

Category: Uncategorised

Replies: 5

Last updated: 2 March 2013

Hip and groin pain.
by vickiep (Mar 2)

I bought some spray oil today in my local shop and was given a lot of helpful advice about how much to use, ie if two or three sprays makes the skin tingle, this indicates low magnesium levels and

by sandy craine (Mar 2)

Hi Vickie, yes you have it right.
The point is that by using magnesium 'transdermally' -not a word but you know what I mean- it will be delivered through your skin into the cells. Every single cell

by vickiep (Mar 1)

Yes, sorry Sandy, you have indeed mentioned this before, but I think there may be something that I haven't understood, so please bear with me on this! I had thought that one used the Oil on each

by sandy craine (Feb 26)

I know I have said this several times before but I really do find that I benefit from supplementing with magnesium. I did use the 'oil' for some time but it does leave a sticky residue ton the skin
Category: Uncategorised

Replies: 5

Last updated: 2 March 2013
cliffee on 19 February 2013

Category: Uncategorised

Replies: 12

Last updated: 10 April 2013

Just had 19 month PCR and still not MMR
by Basil from RSA (Apr 10)

Your story is a wonderful tale of your inner strength, courage and determination to beat your CML.

Well done Sandy, and thanks for relaying your Good News history. This is inspiration for all

by sandy craine (Apr 8)

Hi Cliff, good to hear your news and that despite the switch you are now feeling great. Please update us as you go along.
Sandy

by cliffee (Apr 8)

Hi Friends,
I switched over to Tasigna 600mg a day 3/27. First 3 days had a mild headache and some pain in legs. They both quickly went away and I feel great now. I wouldn't even know I was on

by Katedunn (Apr 3)

Hi Cliff,

If you get the chance I would thoroughly recommend Nilotinib/ Tasigna

I found it easier to tolerate that Glivec and it has made a difference to me.

You get used to the
Category: Uncategorised

Replies: 12

Last updated: 10 April 2013
Belinda Whitting on 12 February 2013

Category: Uncategorised

Replies: 3

Last updated: 14 February 2013

Help
by sandy craine (Feb 14)

Belinda, I am glad I can help. I am only one of many individuals who try keep learning about CML and everything surrounding it in order to share that knowledge with others. This is how I kept myself

by Belinda Whitting (Feb 13)

Thankyou so much sandy for your reply, it means a lot to me as I know you have a lot of knowledge on the subject. X

by sandy craine (Feb 13)

Dear Belinda, from what you say I do not think you should be overly worried just yet.
It is good that your husband's clinician is being cautious and comparing the PCR results to bmb (cytogenetics)

by Belinda Whitting (Feb 12)

Hi I usually read n very rarely post. Anyway my hubby is seen at our local McMillan unit not a centre of excellence!! I usually post when I don't understand things!! Anyway my hubby has been on 400
Category: Uncategorised

Replies: 3

Last updated: 14 February 2013
tadlaw on 11 February 2013

Category: Uncategorised

Replies: 10

Last updated: 21 February 2013

Appointment with Dr. Druker; Considering changing TKI
by fehr (Feb 21)

Strontium ranelate (sold as Protelos by Servier) increases bone formation and reduces bone resorption. It is used to combat osteoporosis and has shown significant improvements in breakage rates

by tadlaw (Feb 19)

Thanks so much for your help! I'm always so grateful to everyone here for your thoughtful responses. Have a great day!

Tracey

by Simon Clayson (Feb 19)

The correct figure for a 4.5 log reduction is 0.0032% because it is a log scale. In a log scale, half way between 1 and 10 is the square root of 10 which is about 3.2 so the extra 0.5 log

by teddyb (Feb 14)

Thank you for replying. I will use the contact form on the "Contact Us" page to send you a message so i dont hijack this thread. Oh, and im hoping for another zero as well :)
Teddy.
Category: Uncategorised

Replies: 10

Last updated: 21 February 2013
David Fitz on 11 February 2013

Category: Uncategorised

Replies: 11

Last updated: 19 February 2013

I think I'm a little confused about some numbers - help!
by David Fitz (Feb 19)

Thanks Pennie - the middle of the night idea is something I think I will try. If I can get used to it, I think it will work well with my 'previous' lifestyle. I know I'm being too precious about the

by Pennie (Feb 18)

Hi David I have found life on Nilotinib rather better than on Glivec! Good results in the lower 0.0s for a while now.
One option for taking the tabs is to set the alarm for an early pill say 5am

by David Fitz (Feb 18)

You haven't confused it at all! I'm still not fully there on PCRs, cytogenetic and molecular responses - but firmly on the road to understanding!
The 3.2 number at diagnosis wasn't told to me then,

by sandy craine (Feb 17)

Hi David,
I am confused that at diagnosis you were given the level of BCR/abl @ 3.2.
I am assuming this meant that this figure is equal to 100% PH (chromosome) positivity?
Normally you would be
Category: Uncategorised

Replies: 11

Last updated: 19 February 2013
sandy craine on 9 February 2013

Category: Uncategorised

Replies: 3

Last updated: 16 February 2013

Ali Lorem
by tony morgan (Feb 16)

My deepest sympathy to all of ali's family and friends, very sad. Tony.

by karen (Feb 16)

So sorry to hear this, love to Ali's family and friends x

by sandy craine (Feb 16)

I heard today the Ali lost her fight with acute GVHD, and sadly she died on Wednesday. Ali was a long time member of this forum and helped encourage others through her posts. She will be missed.

by sandy craine (Feb 9)

Those of you who know Ali Lorem from this forum might like to send her some support as she is suffering form acute GVHD at the moment. You can send a message of encouragement via her journal here:
Category: Uncategorised

Replies: 3

Last updated: 16 February 2013
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