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angela on 2 April 2013

Category: Uncategorised

Replies: 5

Last updated: 3 April 2013

Eye bleeds / Glivec
by angela (Apr 3)

Had another one at 6pm tonight the previous was last Thursday!!

by angela (Apr 3)

Thanks for the info Sandy. I will let you know what they say

Best wishes

Angela

by sandy craine (Apr 3)

Angela, well done for achieving such a low PCR. 0.007% from the Hammersmith lab is pretty good in my book as their 'machine' is extremely sensitive- your are virtually at MR4.5 on the IS - (0.0032

by angela (Apr 3)

Thanks very much Sandy for your advice. I will definately try magnesium as you per your links. I've got appointment next week at Hammersmith where I will certainly ask about switching from Glivec,
Category: Uncategorised

Replies: 5

Last updated: 3 April 2013
Katedunn on 2 April 2013

Category: Uncategorised

Replies: 2

Last updated: 3 April 2013

Major Molecular Response
by Katedunn (Apr 3)

Hi Sandy,

My samples are tested at my local hospital in Sydney, Australia using the International Scale (a recent development as they used to get sent to Adelaide.)

It's great that I am

by sandy craine (Apr 2)

Dear Kate... wonderful to hear this. According to the International Scale you are virtually at MR4 (0.01%)
On the international scale (IS) an RT Q-PCR test result of:

0.1% BCR-ABL = MR 3 (3

by Katedunn (Apr 2)

Hello,

I want to share some happy news. I have achieved a Major Molecular response.

Latest PCR results 0.05. Finally below the 0.1 and almost exactly a 3 log reduction.

Have been
Category: Uncategorised

Replies: 2

Last updated: 3 April 2013
Anonymous (not verified) on 1 April 2013

Category: Uncategorised

Replies: 1

Last updated: 1 April 2013

Insurance
by Alastair C (Apr 1)

Linda there are a number of insurers listed on the FAQ page of this site here http://www.cmlsupport.org.uk/faq_travelfaq

by Anonymous (Apr 1)

HI, I am hoping to visit my son in the USA. Can anyone suggest an inexpensive Insurance provider.
Thanks. Linda.
Category: Uncategorised

Replies: 1

Last updated: 1 April 2013
Alastair C on 1 April 2013

Category: Uncategorised

Replies: 4

Last updated: 2 April 2013

Glivec Patent Case in India
by sandy craine (Apr 2)

Hi David, This is about patent law and generics.... they did not change the formula- just tried to patent the salt form of imatinib- i.e the mesylate bit. This was an attempt to stop the Indian

by David Fitz (Apr 1)

When did Novartis change the formula? Was this just a change to the drug they had on-file and screened for use with CML, or some change they made after marketing Glivec?

by sandy craine (Apr 1)

I saw this this morning. I am fairly surprised that Novartis decided to try what is called 'evergreeing' imatinib so that they could take out a new patent and continue to extract profit. Apparently

by RodM (Apr 1)

Just found it as well.
I find it hard to see the justification for allowing the drug companies to put Imatinib back on patent.
The laws allow them to have 20 years to get back their investment,
Category: Uncategorised

Replies: 4

Last updated: 2 April 2013
David Fitz on 30 March 2013

Category: Uncategorised

Replies: 3

Last updated: 3 April 2013

Magnesium / Calcium for cramps
by sandy craine (Apr 3)

Hi David... I don't think there is much chance of overdoing it so how much you use depends on you. Personally I started off with 1 tspn 2 times a day. You can also rub a little into to painful

by David Fitz (Apr 3)

Hi Sandy,
I ordered some of the cream from Ancient Minerals which has just arrived. How much would you normally use? There's no directions on the bottle, really.
Thanks,

David.

by sandy craine (Mar 31)

Hi David,
Take a look at this website: http://www.nutritionalmagnesium.org/
then you might like to take a look at a recent discussion thread we had back in February about pain and a possible way to

by David Fitz (Mar 30)

Hi,
Reading through here, and elsewhere it sounds like magnesium and calcium come well recommended for (leg) cramps. I've been getting a fair bit of this with dasatinib over the last month since I
Category: Uncategorised

Replies: 3

Last updated: 3 April 2013
Barbs on 29 March 2013

Category: Uncategorised

Replies: 2

Last updated: 2 April 2013

Latest PCR result
by angela (Apr 2)

Hi Barbara, I'm so pleased for you that's excellent news x

by sandy craine (Mar 29)

Well done Barbara, thanks for sharing such wonderful news here. I am sure it will encourage all.

Sandy
BTW, I noted on another forum you mentioned that some patients on the STIM study had been

by Barbs (Mar 29)

Thought you might be interested to know that my latest PCR (after 22 months off Glivec) came back negative. Next PCR due in May.
Category: Uncategorised

Replies: 2

Last updated: 2 April 2013
sandy craine on 23 March 2013

Category: Uncategorised

Replies: 4

Last updated: 24 March 2013

EMA approves marketing authorisation for ponatinib/Iclusig
by David Ryner (Mar 24)

Yes Chris you are correct. The granting of EMA marketing authorisation for iclusig will be of assistance for clinicians making applications to the Fund on behalf of their patients provided of course

by cdw5000 (Mar 23)

Hi Sandy,
No snow in Bristol, just a bit of rain. We seem to have escaped - my parents in Halifax though have 18" plus drifting.
At least if Iclusig is approved in Europe it should make any

by sandy craine (Mar 23)

Hi Chris,
Well yes you may be right. Usually, as soon as EMA give approval for marketing authorisation then NICE likes to come in as soon as it possibly can. We are expecting ponatinib will enter

by cdw5000 (Mar 23)

So only another few years until NICE recognises its utility, well behind the curve of others.
Cynical Saturday
C
Category: Uncategorised

Replies: 4

Last updated: 24 March 2013
blueyes74 on 21 March 2013

Category: Uncategorised

Replies: 5

Last updated: 22 March 2013

excuse me Dr but could you please explain?
by skiinglaketahoe (Mar 22)

Hi
Just wanted to remind you that everybody is entitled to a second opinion about their treatment. If you are not keen to ask your consultant to refer you then your GP can easily do this.

by sandy craine (Mar 21)

Well...I am glad you found us again!
If they send your PCRs to Hammersmith then you really are in a good place. Their lab has one of the most sensitive PCR methodologies in the world- along with

by blueyes74 (Mar 21)

Thanks for both your replies and so quickly.
I attend North Middx Hospital which is only 10 minutes from where i live. I'd love to go to UCL but i don't know if i could go there.
I know they do

by sandy craine (Mar 21)

Hi,

From your description of your 'communication' with your doctor/s it sounds like you might do better elsewhere if that is an option? You do have a 'right' to request at least shared care
Category: Uncategorised

Replies: 5

Last updated: 22 March 2013
Katy Jones on 18 March 2013

Category: Uncategorised

Replies: 4

Last updated: 19 March 2013

New Diagnosis - please help...
by sandy craine (Mar 19)

Hi Katy, please update us when you have more detail about your brothers white cell count and whether he is in chronic phase, accelerated phase or more advanced disease. It is unlikely that any CML

by teddyb (Mar 18)

Sorry to hear about your brother.

I was diagnosed somewhat the same way. I had painfull/tender area on my stomach which later turned out to be my spleen, i was 37 years old at the time. My

by cdw5000 (Mar 18)

Katy,
Unless your brother is in a really advanced stage of the disease then BMT will likely not be the route to go down.
Without being narcissistic watch this video I did 18 months ago. your bro

by remw (Mar 18)

You should take a look at Sandy Craines notes from the UK CML Patient Carer Day. There is lots of useful information here. This is the direct link to it:

http://www.cmlsupport.org.uk/sites/
Category: Uncategorised

Replies: 4

Last updated: 19 March 2013
johnw1001 on 13 March 2013

Category: Uncategorised

Replies: 3

Last updated: 15 March 2013

Some upcoming issues
by David Ryner (Mar 15)

Hi John
Some points in an even longer response to your long and detailed post. Some of my comments you will be aware of but I thought would write this for a much wider audience who may not know as

by vickiep (Mar 14)

Yes, about a year ago, I went onto this new system, in my case run by "central Homecare" (Boots). I was sent an expensive glossy brochure and duly contacted by Homecare to make extensive

by RodM (Mar 13)

This is a lot of information to think about!
Personally, taking Dasatinib under Spirit 2 and seeing my PCR drop to 0.54% after 9 months, my biggest concern is the 250 Dasatinib arm patients under

by johnw1001 (Mar 13)

Hi All

Just thought that I would flag up what some of us might see as concerns for the future in terms of changes afoot in the organisation and funding of healthcare in England and in addition
Category: Uncategorised

Replies: 3

Last updated: 15 March 2013
nigel on 12 March 2013

Category: Uncategorised

Replies: 2

Last updated: 12 March 2013

Latest set of results
by nigel (Mar 12)

Thanks Sandy thats a great help, will email the Doctor to see if she is able to find out the conversion factor used in Birmingham.

All the best Nigel

by sandy craine (Mar 12)

I have tried to find an explanation that would help but, as you can see from the snip from an article published in Blood (2006) by Tim Hughes..see below... I find your doctors explanation confusing

by nigel (Mar 12)

Hi all, been on Imatinib since October 2011, had my latest result today
"Your bcrabl/abl1 ratio from the last appointment is 0.006. This isn’t quite a 3 log reduction yet but is a continuing
Category: Uncategorised

Replies: 2

Last updated: 12 March 2013
Adolfo on 11 March 2013

Category: Uncategorised

Replies: 3

Last updated: 13 March 2013

PCR 0.00% in 8 months Nilotinib
by sandy craine (Mar 13)

Hi Adolfo,
Your platelets are not too bad. On the lower end of normal. It might be that they take some time to recover and perform their function (blood clotting) after your very quick response.

by Adolfo (Mar 13)

01/06/2012 100% BCR/ABL vs cABL.

07/09/2012 35,09% BCR/ABL vs cABL.

06/12/2012 0% BCR/ABL vs cABL.
211 Platelet 20/12/2012

by sandy craine (Mar 11)

Hi Adolfo,
That is an amazing result! Bruising might be because you have low platelet count- which is not surprising given your response. Do you know your complete blood count? Your platelets will

by Adolfo (Mar 11)

I started treatment with Nilotinib in April 2012, and in January 2013 the results were fantastic. 0.00%

But not all good news, because I have some skin problems, and I'm easily bruised.
Category: Uncategorised

Replies: 3

Last updated: 13 March 2013
Steven Davies on 10 March 2013

Category: Uncategorised

Replies: 1

Last updated: 11 March 2013

CML booklet online in the US. Take a look.
by sandy craine (Mar 11)

Hi Steven.... this has been on the FAQ page for some time here- http://www.cmlsupport.org.uk/faq_cmlfaq (and now also on the CMLSGroup facebook page-) but thanks for putting the link here as some do

by Steven Davies (Mar 10)

Take a look at this link. I found it very interesting.
We should have one like this for the UK
http://www.nccn.org/patients/patient_guidelines/cml/files/mobile/index.h...
Category: Uncategorised

Replies: 1

Last updated: 11 March 2013
Phil Poole on 10 March 2013

Category: Uncategorised

Replies: 1

Last updated: 10 March 2013

Results of Imatinib 'Drug Free' Month - Insomnia & other side effects.
by sandy craine (Mar 10)

Hi Phil, thanks for your update. You have had a good response to 400mg IM so you might well be OK to reduce the dose to 300mg. Hopefully you would tolerate this better and the depression you talk

by Phil Poole (Mar 10)

You may recall that I stopped taking Imatinib due to very long term problems with Insomnia, fatigue, & stomach & back aches over recent months. The result was a surprise actually, as I knew
Category: Uncategorised

Replies: 1

Last updated: 10 March 2013
gizmos mum on 8 March 2013

Category: Uncategorised

Replies: 6

Last updated: 18 March 2013

PCR result 28% at 10 months
by David Fitz (Mar 18)

SPIRIT2 will still probably want to monitor, yes. I dropped out of the SPIRIT2 imatinib arm due to intolerance, and am now on dasatinib. SPIRIT2 have asked if I'd mind still giving regular samples,

by sandy craine (Mar 14)

That's really great news...you must be so relieved. I am glad you found the strength to push for the change - your research paid off!

I think it is also good that SPIRIT 2 lab will still

by gizmos mum (Mar 13)

Hi Sandy, great news today, I am now on Nilotinib as they think i have resistance to Imatinib. I am so pleased, thank you for all your info and giving me the push to try for this change. It has been

by gizmos mum (Mar 10)

Thank you Sandy for the tables and link you provided. After reading all this I think I have to agree with my Consultant's opinion that I am still within guidleines (at least for Essex Health
Category: Uncategorised

Replies: 6

Last updated: 18 March 2013
joe m on 6 March 2013

Category: Uncategorised

Replies: 7

Last updated: 18 March 2013

Three months since being diagnosed. On Nilotinib.
by joe m (Mar 18)

Just over three months and feeling good. Had some side efects at first, but mostly gone now, also lost stone and a half, but eating more now, and putting a bit back on. Saw consultant couple of

by jacqui from Colchester (Mar 18)

Hi Joe
I am also being treated at Colchester and I am now taking Nilotinib.. How are you finding the drugs, "touch wood" I am getting on well with them jacqui

by joe m (Mar 14)

Hi Sandy. The only results I have are the blood test results I get each time I have seen the consultant. In the copy letter they send to my GP. Not sure if these are what you mean.

Joe.

by joe m (Mar 14)

Hi Chris thank you for the advice.

Joe.
Category: Uncategorised

Replies: 7

Last updated: 18 March 2013
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