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daniellaw on 3 November 2014

Category: Uncategorised

Replies: 6

Last updated: 25 March 2015

EURO-SKI study
by sandy craine (Mar 25)

Hi Daniella,
Thanks for updating on your progress. I am sure you are very happy to be able to do the DESTINY protocol inspite of not being eligible for the study. Even though your data will not be

by daniellaw (Mar 21)

Hi everyone,
I posted back in November that I was looking into enrolling on the EUROSKI study after Prof Apperley at Hammersmith had suggested it at my check up. We also talked about the possibility

by sandy craine (Feb 9)

Hi Simon... this does seem so unfair. The trial inclusion criteria is always very strict- but in this (and Daniela's) case it seems a little churlish. Over time it might be that this particular

by Simon Clayson (Feb 7)

My wife has been looking forward to joining the DESTINY trial ever since it was first announced. She is treated in Birmingham and when that centre recently joined the trial, she was delighted that
Category: Uncategorised

Replies: 6

Last updated: 25 March 2015
david_a on 27 October 2014

Category: Uncategorised

Replies: 2

Last updated: 4 November 2014

PCR levels after stopping TKI's
by FOURthPLINTH (Nov 4)

Hi David,
It may interest you - I stopped taking tki`s almost 5 months ago.So far so good!
Read my post to Daniella [3Nov] re:EURO-SKI Study.
Sue.

by fehr (Nov 4)

Not quite relevant, but I had been taking Imatinib 400mg for six and a half years when I stopped because of particular side effects. My PCR results after the first year had settled to around 0.003

by david_a (Oct 27)

hello, is there anyone out there not on tkis with a stable (low) pcr level? You may have been on the STIM trial?

If so what is your pcr level and how long have you been off the tkis?
Category: Uncategorised

Replies: 2

Last updated: 4 November 2014
Frenchguy on 23 October 2014

Category: Uncategorised

Replies: 8

Last updated: 25 October 2014

Myelocytes
by sandy craine (Oct 25)

My understanding is that myelemia means the same as myelocytosis which is an overabundance of meylocytes in either the marrow or peripheral blood.

by Frenchguy (Oct 25)

Sorry for being a bit boring but I have got one last question. I watched an other time this blood test. In fact, it is myelemia at 0.03 and not myelocytes sorry to have made the confusion. In the

by Lucas (Oct 24)

Thanks, francis! my sokal score was pretty high too due the spleen size. now, put in your mind that the sokal score is from the interferon era (70's/80's). there's some research with imatinib and

by Frenchguy (Oct 24)

Thanks very much, It is clearer now, the body and blood languages are very very difficult to understand. The most difficult is that I can't ask to my onc because he is too busy and I am fed up with
Category: Uncategorised

Replies: 8

Last updated: 25 October 2014
Anonymous (not verified) on 17 October 2014

Category: Uncategorised

Replies: 1

Last updated: 18 October 2014

Eczema
by sandy craine (Oct 18)

Linda, as far as I am aware, this kind of skin rash is quite a common side effect from nilotinib. I think from what others have said that it resolves in most people if the drug is stopped for a

by Anonymous (Oct 17)

Hi I am on 400mg daily of Nilotonib, I started in Jan 2013. By May I had eczema on my legs. My consultant said it could possibly be

connected to the TKI. It settled down after using steroid
Category: Uncategorised

Replies: 1

Last updated: 18 October 2014
mal e-jones on 16 October 2014

Category: Uncategorised

Replies: 1

Last updated: 16 October 2014

high blood pressure from glivec
by Richard42 (Oct 16)

Hi there
thats really interesting - I've been having my blood pressure checked now I'm on a trial and it's higher than it ought to be especially as I exercise regularly and am not overweight. Will

by mal e-jones (Oct 16)

this is my first post, hope you are all doing well, I have been taking glivec for many years , I think I was one of the first in North Wales to do so, apart from two bouts of pancreatitis all has
Category: Uncategorised

Replies: 1

Last updated: 16 October 2014
YoungWithCML on 13 October 2014

Category: Uncategorised

Replies: 1

Last updated: 15 October 2014

OK - This is a tough one
by sandy craine (Oct 15)

From reading your post I am reminded that the US health system is not one that I would like to emulate and I am very glad that we have a national health system such as we have in the UK. You have

by YoungWithCML (Oct 13)

So I'm a 26 year old male who just got officially diagnosed in June of this year, 2014.
4 Years ago I got hurt in an auto accident (not my fault) and have been battling an insurance company for my
Category: Uncategorised

Replies: 1

Last updated: 15 October 2014
sandy craine on 13 October 2014

Category: Uncategorised

Replies: 1

Last updated: 13 October 2014

Patient/carer day
by Olivia (Oct 13)

First of all - what an excellent venue. It was the right size, and the spectacular views at lunchtime were a good contrast to the concentration of facts and opinions in the sessions.
The opening

by sandy craine (Oct 13)

Slides and videos are now uploaded. See link via post in red at top of page

Sandy
Category: Uncategorised

Replies: 1

Last updated: 13 October 2014
ypoulton on 13 October 2014

Category: Treating CML

Replies: 34

Last updated: 1 July 2015

Destiny trial
by darley (Jul 1)

:)
I asked when I was there today if they had a high level summary of how the people on the trial were doing so far.
Anyone else asked for that? Or got it?

by darley (May 28)

All remains well.
No cramps for 3 months now :)
Also my sense of smell and taste is most definitely returning :) Never expected that

by Richard42 (May 11)

Just an update - back to HH today for month 13 PCR result and still zero. So, officially stopping imatinib today. It is a sense of freedom tinged with slight apprehension since while I was

by darley (May 1)

So far, so good
Category: Treating CML

Replies: 34

Last updated: 1 July 2015
teddyb on 9 October 2014

Category: Uncategorised

Replies: 1

Last updated: 10 October 2014

Invalid url
by sandy craine (Oct 10)

Hi Teddy,
thanks so much for letting me know! I have now made the correct links and pathways so that you can access the pdf on CMLAdvocates.net website. They only share their info directly through

by teddyb (Oct 9)

Hello Sandy.
Just wanted to let you know, the url mentioned here does not work:
http://www.cmlsupport.org.uk/node/8558
Would be nice if you could update it to a working one :)
Teddy
Category: Uncategorised

Replies: 1

Last updated: 10 October 2014
Chad Chinavare on 7 October 2014

Category: Uncategorised

Replies: 2

Last updated: 7 October 2014

Depression with Gleevec?
by sandy craine (Oct 7)

Hi Chad,

I think that everything that Chris has suggested would help. As humans we are designed to move and even though it may be difficult to start with, if you try a little walking exercise

by cdw5000 (Oct 7)

Hello Chad,
It is possible Gleevec is causing or contributing to your symptoms. I suffered with some mild depression last year and it took some determined steps to improve my mental state. My advice

by Chad Chinavare (Oct 7)

Hello, I was diagnosed with CML in 2009 when I was 14. I have been on Gleevec (400 mg.) ever since. I am currently in remission and have been since 2011. Also, I am still on Gleevec(400 mg). Within
Category: Uncategorised

Replies: 2

Last updated: 7 October 2014
johnw1001 on 6 October 2014

Category: Uncategorised

Replies: 3

Last updated: 7 October 2014

Generic imatinib-risks and issues
by Richard42 (Oct 7)

Hi John
Personally, I have no concern about using a generic that has been approved by the FDA or EMA. They have to be bioequivalent, which means they achieve the same levels of active in the body

by Lucas (Oct 6)

Hi john,
I'm brazilian and here the public service uses generic imatinib. my doctor said that he believes that the medication is good, but there's not study about it. i've heard about a few cases of

by sandy craine (Oct 6)

Hi John,
I will be asking the CML clinicians who are attending the UK CML patient/carer day in Newcastle about this issue this coming Saturday.
Thanks for bringing the subject to our attention as

by johnw1001 (Oct 6)

It will be of interest to all of us as CML patients currently taking the branded version of imatinib namely Glivec that not so far into the future that it will be off patent and that generic
Category: Uncategorised

Replies: 3

Last updated: 7 October 2014
sandy craine on 3 October 2014

Category: Uncategorised

Replies: 8

Last updated: 13 October 2014

National UK CML Patient Day October 10th
by nigel (Oct 13)

Hi John Paul, Glad we had chance to talk, hopefully you will find higher does glucosamine helps, I believe it did me - Pre CML so maybe different, but hopefully not. Let us know how you get on.

by Parklife (Oct 12)

Thanks for the links, I am going to order some oil, even it stings like a Bee then it will be better than this constant ache, tingle and general soreness in the neck, shoulder and back I'm getting.

by sandy craine (Oct 12)

Hi.... yes it was a good day, in fact I found it to be one of the best meetings so far.

It was lovely to talk with you and your wife and I really hope you can resolve the joint pain you are

by Parklife (Oct 11)

Hi Sandy
Just wanted to say, it was great to meet you finally today at the CML day in Gateshead, your presentation was very good. Hope everyone enjoyed a sunny day on Tyneside. Hopefully everyone
Category: Uncategorised

Replies: 8

Last updated: 13 October 2014
Lienke SA on 30 September 2014

Category: Uncategorised

Replies: 2

Last updated: 1 October 2014

Indirubin (Indigofera tinctoria)
by Lienke SA (Oct 1)

Hi Sandy
Thank you for your comment and all your hard work!
I am responding well to treatment with MMR after 8 months of treatment, which I am extremely greatful for. However my Platelets are very

by sandy craine (Oct 1)

I have not heard of this particular herb as being specific for treatment of CML. Chinese Traditional Medicine (TCM) has a different approach to the current model of 'scientific' western medicine...

by Lienke SA (Sep 30)

Hi
I am 33years old. Diagnosed with cml 9 months ago. On Nilotinib.
Does anybody know anything about Indirubin (Indigofera tinctoria)?
I found the following on University of Maryland Medical
Category: Uncategorised

Replies: 2

Last updated: 1 October 2014
Lucas on 24 September 2014

Category: Uncategorised

Replies: 4

Last updated: 26 September 2014

trisomy in chromosome 8 ph-
by Lucas (Sep 26)

hi, ginger! thanks for the words. trisomy is another genetic alteration (i have three chromosomes 8). if the trisomy is on the leukemic cells then there's a clonal evolution (the leukemia is

by ginger (Sep 26)

Dear Lucas,

I read your posts all the time and am glad you have such a close relationship with your doctors. Good luck on Tasigna. I had never heard of trisomy. . .not sure if staying in the

by Lucas (Sep 25)

Thanks, sandy. My doctors aren't concerned about the trisomy (it was only in 10% of my cells) but they want to continue my close monitoring (i have cbcs every month and bmas every 3). I started

by sandy craine (Sep 25)

Hi Lucas,
from some brief research it seems that the T8 in PH neg cells is reported in patients treated with imatinib, in most cases it seems to be transient

http://www.ncbi.nlm.nih.gov/pubmed
Category: Uncategorised

Replies: 4

Last updated: 26 September 2014
MaryClaire on 23 September 2014

Category: Uncategorised

Replies: 2

Last updated: 25 September 2014

Newly diagnosed with CML
by sandy craine (Sep 25)

Welcome, I am glad you found you way here via our Facebook page. Gerry has already suggested how you might find support in Australia either via facebook group or via the Leukemia Foundation- http://

by Gerry (Sep 24)

Hi MaryClaire,

Just wanted to wish you luck with the Peg-Interferon, I'm not fond of needles and the self injecting would spin me out, but I guess people get used to it. I'd have to organise

by MaryClaire (Sep 23)

Hi

I'm MaryClaire and in the past two months I've been diagnosed with CML. I'm from Australia and have chosen to take part in a trial where I'm taking Nilotinib and in a month or so I'll also
Category: Uncategorised

Replies: 2

Last updated: 25 September 2014
sandy craine on 23 September 2014

Category: Uncategorised

Replies: 2

Last updated: 22 October 2014

Q RT-PCR: A Primer For Patients - online version
by ginger (Oct 22)

Dear Sandy and Sarah,

Thank you for making this available to us. Finally have a better understanding of those logs!

Ginger

by sandy craine (Sep 29)

For those who requested a printed copy of the q-PCR Primer for Patients, I hope you have now received it. for UK members of this forum, we have decided to waive the cost of P&P and will provide

by sandy craine (Sep 23)

Our designer has kindly produced an online version of the hard copy of the Primer. So for those of you like David who prefer to work towards being 'paperless' then you can now access it clicking on
Category: Uncategorised

Replies: 2

Last updated: 22 October 2014
sandy craine on 21 September 2014

Category: Uncategorised

Replies: 4

Last updated: 24 September 2014

22/09 World CML Day: Q RT-PCR: A Primer For Patients
by sandy craine (Sep 24)

Hi David,
Maybe this link (provided by our graphic designer) would be an easier way to download the PDF
www.withrelish.co.uk/cml/qrt-pcr-primer.pdf
Hope that works,

Sandy

by David Fitz (Sep 24)

Thanks Sandy,
For the benefit of those who'd like a PDF copy to save to their computer, e-reader or tablet, rather than rely on the web based view (which can be a bit tricky on the eyes and

by sandy craine (Sep 23)

Hi David,

Thanks so much for the offer, but there is no need for a donation- it was always meant to be freely available to all.
The graphic designer- who produced all the illustrations and

by David Fitz (Sep 22)

Hi Sandy -
I"m happy to make a donation towards the cost of production, but I'm a paperless kind of guy wherever possible so it would be great if the PDF was available to UK patients as well!
David
Category: Uncategorised

Replies: 4

Last updated: 24 September 2014
wshi2001 on 15 November 2014

Category: Uncategorised

Replies: 12

Last updated: 23 November 2014

Red pinpoint spots on skin
by ginger (Nov 23)

Dear William, Good, good luck with stopping the Imatinib for a week in hopes the spots diminish. I did have blood work when the spots appeared and my platelets were low/normal. I think my body

by wshi2001 (Nov 22)

hi, Ginger,

My latest blood test result is quite low refer to my new post(Low platelets,low WBC,low RBC). The red spots is mainly due to ultra low platelets. It doesn't disappear. I was told

by ginger (Nov 22)

Dear William,

Good luck with the blood test. I have taken off the jade bracelet which is such a lovely green color. What you wrote is a scary thought. And to think that jade is supposed to

by David Fitz (Nov 20)

The ones that were on my arms eventually went away about 90%. I get a lot on my legs too that have persisted, but since as a guy I don't wear skirts too often, it doesn't really bother me!
Category: Uncategorised

Replies: 12

Last updated: 23 November 2014
blueyes74 on 19 September 2014

Category: Uncategorised

Replies: 2

Last updated: 20 September 2014

I hit the big Zero
by skiinglaketahoe (Sep 20)

Hi, I am under the Royal Free for my CML. I have been extremely pleased with my treatment. UCH and Royal Free are linked in haematology and several of the consultants have clinics at both sites. UCH

by sandy craine (Sep 20)

Congratulations on your lovely zero's. Regarding getting to hammersmith- I live in east london (E!7) and still make the treck to HH. Driving there is a nightmare so now I get the tube to East Acton

by blueyes74 (Sep 19)

This week was my 5yr mark and I finally got the 0.000.

I currently go to North Middx hospital but am thinking of changing. They haven't got a clue there about any of the trials taking place
Category: Uncategorised

Replies: 2

Last updated: 20 September 2014
Lucas on 19 September 2014

Category: Blood tests

Replies: 9

Last updated: 3 June 2015

pcr < 10% and not in MCyR. is it possible?
by Mr Bill (Jun 3)

Sorry moved post

by Lucas (Oct 3)

unfortunately not many labs run pcr tests with this profile. i think i'll use this most sensitive lab for a long time. it's far from my city (3 hours by plane), but i think that's the only way i can

by sandy craine (Oct 3)

Lucas, you can safely ignore any result that has less than 10,000 copies of a control gene (BCR; ABL1 etc)
I am sure you will do well on tasigna-
Sandy

by Lucas (Oct 3)

Thanks, gerry! The paper you send me talk about pcr x cytogenetics at diagnosis. i don't know if we can apply this after DX. As you can see, all my results were less than 10%, even the test i had in
Category: Blood tests

Replies: 9

Last updated: 3 June 2015