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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
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