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sandy craine on 29 September 2012

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Replies: 1

Last updated: 29 September 2012

CML Adherence to TKI Therapy Survey
by giora (Sep 29)

Hi All

Thanks for participating in the International CML patients adherence survey.

Even though it seems quite obvious that a CML patient will take his life saving drugs on a daily basis

by sandy craine (Sep 29)

Message from Giora:
I would like to share with you some data on our international CML patients adherence survey.

We launched the survey on 22.9 - five days ago.

This morning we had 507
Category: Uncategorised

Replies: 1

Last updated: 29 September 2012
Lyndsey on 29 September 2012

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Replies: 3

Last updated: 29 September 2012

Choices trial
by sandy craine (Sep 29)

Hi Lynne,
Thanks for flagging this up. At the last HH group meeting it was mentioned that they were having some problems with recruitment due to the perception of the effects on eyesight. I thought

by Lyndsey (Sep 29)

Thanks sandy for this very useful information. I am very lucky to have Professor Holyoake as my Consultant. I am seriously considering entering the trial just wondered if anyone else on it. Also

by sandy craine (Sep 29)

ChOICES - CHlorOquine and Imatinib Combination to Eliminate Stem cells
A Randomised phase II trial of Imatinib (IM) versus hydroxycholorquine (HCQ) and IM for patients with Chronic Myloid Leukaemia

by Lyndsey (Sep 29)

Hi everyone,

I am considering joining this trial and wondered if anyone else is on it. It is phase 2. It adds in hydroxycholorquine 800mgs to imatinib for 12 months?? Hope everyone keeping
Category: Uncategorised

Replies: 3

Last updated: 29 September 2012
sandy craine on 28 September 2012

Category: Uncategorised

Replies: 4

Last updated: 29 October 2012

Videos
by sandy craine (Oct 29)

Hi Teddy.... I had a hard time finding it again but eventually managed to. So I have renewed the link on the video page. I am really not sure why it was removed because I found it again. However

by teddyb (Oct 28)

Thanks Sandy.

Any chance of an update link on the "DNA: Curing Cancer- PBS Documentary" video?
It seems to be removed from youtube.
Teddy

by sandy craine (Oct 26)

Watch an inspiring video of a patient diagnosed with CML who did not respond to available TKi's- he had T315i mutation and entered one of the phase l clinical trial of ponatinib.
Sandy

by chrissie (Oct 2)

Particularly the interview with the Canadian, Dr Lipton. This one will keep me positive for a long time!!

Thanks for posting it, Sandy

best

Chrissie
Category: Uncategorised

Replies: 4

Last updated: 29 October 2012
jacqui from Col... on 25 September 2012

Category: Uncategorised

Replies: 8

Last updated: 2 October 2012

Nilotinib
by jacqui from Colchester (Oct 2)

Thanks for the reply
I have continued with the green tea (obviously no milk) and I have been fine - I cant say that I have had any of the side effects mentioned. I think I had worse side effects on

by jacqui from Colchester (Oct 2)

Hi Emma
I have been lucky so far I dont think I have any side effects. I did develop Roscea whilst on dasatinib which hasnt got any worse. My consultant warned me mainly about headaches (luckily

by EmChops (Sep 30)

Hi Jacqui

I have been on Nilotinib for 18 months now and I was told only water during fasting period, sometimes when I am freezing cold I risk a peppermint tea but I have noticed that my rash

by cdw5000 (Sep 28)

Hello Jacqui,
i'm 24 months into Nilotinib now and have read mixed reports about the fasting element. I tend to stick only to water - however, i have been known to have a cup of weak black tea 30
Category: Uncategorised

Replies: 8

Last updated: 2 October 2012
welshlass65 on 25 September 2012

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Replies: 2

Last updated: 26 September 2012

CML Gone??
by welshlass65 (Sep 26)

thank you Sandy, you have explained that very clearly for me.

by sandy craine (Sep 25)

The short answer is no! Sorry.
PCRu- U stands for undetectable- is a term used by patients not clinicians. It is a way of saying that by the current sensitivity of PCR testing evidence of the

by welshlass65 (Sep 25)

When you reach PCRU - complete molecular remission, does this mean that the CML has GONE??? Like other types of cancers in remission.

I seem to hear differing opinions on this.
Category: Uncategorised

Replies: 2

Last updated: 26 September 2012
alison28 on 24 September 2012

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Replies: 4

Last updated: 25 September 2012

Abdomen problems
by alison28 (Sep 25)

Thanks sandy:)
My last results were 0.14%
Manchester are usually fine, I find I am doing the chasing all the time, especially since the old research nurse left who I really liked.

I will ring

by sandy craine (Sep 25)

Alison,
what were your last results. This must be quite worrying for you and all I can advise is that you do not accept the 'made a note..." etc. You need to be proactive here and ask for an urgent

by alison28 (Sep 25)

Hi sandy.

I have informed Manchester and my local hospital about what's going on and they have just " made a note of it"

I'm appalled if I'm honest as the symptoms I'm experiencing are

by sandy craine (Sep 25)

Hi Alison, has your haematologist (rather than GP/other clinical expert) given a view on this pain? If it is to do with your spleen then you would need to review how your are responding to your
Category: Uncategorised

Replies: 4

Last updated: 25 September 2012
welshlass65 on 23 September 2012

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Replies: 6

Last updated: 25 September 2012

complete molecular remission
by welshlass65 (Sep 25)

Many thanks Gerry, hope you are well too.

by Gerry (Sep 25)

The news is great - don't beat up on yourself. Even when I tell people it is a "response" to the drug, it is still difficult for them to get their head around the idea of a drug keeping it in check

by welshlass65 (Sep 24)

Hi Chrissie, thank you.

I have been taking 400mg daily of Imatinib (Gleevec) and it took me 15 months to get here. I have told my friends and family the drug has done its job and that I have

by chrissie (Sep 24)

I'm sure you are overjoyed reaching CMR. That's the place we all aim to get to in time so well done and enjoy the feeling. Which TKI are you taking?

If I reach this position I shall just tell
Category: Uncategorised

Replies: 6

Last updated: 25 September 2012
Swede on 21 September 2012

Category: Uncategorised

Replies: 2

Last updated: 27 September 2012

Scotland to England move
by Swede (Sep 27)

Thanks for your advice Sandy - much appreciated. I will endeavour to get a referral to the Hammersmith somehow, and hope that I can get on some sort of trial sometime.
It's a relief to know that I

by sandy craine (Sep 21)

Hi Sarah,
if you do take the plunge to move to England then you will continue to receive dasatinib through the NHS as you are already treated with this TKI. If you were asking to move to dasatinib

by Swede (Sep 21)

I currently live in Scotland, where I’ve been on Dasatinib for the last 4 years or so, but am planning to relocate to West Dorset. As the time draws closer I’m getting worried about whether I will
Category: Uncategorised

Replies: 2

Last updated: 27 September 2012
nigel on 21 September 2012

Category: Uncategorised

Replies: 7

Last updated: 2 October 2012

CML UK – New Facebook page set up.
by cousineg (Oct 2)

There are two other lists for CML (excluding Facebook):
List of CML sites

http://www.cmleukemia.com/sites--english-and-other-languages.html
List of forums about CML

http://www.

by cousineg (Sep 27)

CML UK is now listed at http://www.cmleukemia.com/cml-on-facebook.html

by welshlass65 (Sep 27)

I personally actually prefer pages, as a page's status updates appear on my newsfeed. with groups you have to remember to click on the group if you want to read things. but i will gladly join either

by nigel (Sep 24)

Yes will do,get my BMB back in 4 weeks hoping for a nil - CCR as this will be my 12 month result. Hope to generate some traffic to CMLsupport, will look into seeing if i can add a perminant link
Category: Uncategorised

Replies: 7

Last updated: 2 October 2012
sandy craine on 17 September 2012

Category: Uncategorised

Replies: 2

Last updated: 22 October 2012

Register here for UK National CML Patinet/Carer Seminar- Glasgow 17th November 2012
by sandy craine (Oct 22)

Dave... I contacted Meg today and she confirmed that the booking reference is all that is needed, so just take it with you.

So far 63 patient/carers have registered.
Best, Sandy

by marsy (Oct 21)

Hi Sandy,

Really looking forward to the day and meeting a few people. Just a quick question on the booking arrangements for the day.

I've booked through the Newcastle University Webstore

by sandy craine (Sep 17)

Please see attached for details of the programme and links to register for this years Patient Carer Seminar in Glasgow on 17th November. Sandy
Category: Uncategorised

Replies: 2

Last updated: 22 October 2012
jonah0674 on 15 September 2012

Category: Uncategorised

Replies: 10

Last updated: 19 October 2012

Cml groups
by sandy craine (Oct 19)

Dear Paul, glad you found the LC meeting of some help. If you need any advice or support about setting up a support group in your area, please contact me privately at cmlsupportgroup@gmail.com and

by jonah0674 (Oct 16)

Sorry for the delay in replying, it is not cml specific.i did go was interesting. Next one in 3months details will be on their website, it gave me an idea how to proceed as I've never been to a

by sandy craine (Oct 11)

Thanks for updating on possible midlands meetings. Is the meeting you mention CML specific or more general Leukaemia information?
Best wishes,

Sandy

by jonah0674 (Oct 11)

Sorry haven't had chance to look into yet haven't been to good,will do shortly,however leukaemia care have a new support group which starts tonight at worcester at the leukaemia care offices.
Category: Uncategorised

Replies: 10

Last updated: 19 October 2012
nigel on 15 September 2012

Category: Uncategorised

Replies: 3

Last updated: 17 September 2012

Glasgow Meeting November 2012 ?
by sandy craine (Sep 17)

I have posted a pdf of the flyer for the seminar - see first post in Red at top of this page

You can register through the link - details contained on flyer. There is a charge of £ 10 per

by sandy craine (Sep 16)

Yes... it is on 17th November- I am waiting for the advert/flier which will contain details for registration etc.

It will be at the Glasgow Hilton and I believe that there will be a set of

by marsy (Sep 15)

Hi Nigel,

That was a co-incidence you posting today as we were looking for information too. I've not seen anything for a while and was wondering what the plans are --- date /hotel etc.

by nigel (Sep 15)

Morning all. Just a quickie, I seem to have read a few weeks ago about a large group meeting in Glasgow, similar to Cardiff last year, just wondered if this was still on the horizon ?
Nigel
Category: Uncategorised

Replies: 3

Last updated: 17 September 2012
sandy craine on 13 September 2012

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Replies: 2

Last updated: 19 July 2013

Kings College Hospital- CML patients meeting
by sandy craine (Jul 19)

Hi Tony,

yes there is and it will be in Oxford on Saturday Nov. 16th, at one of the colleges. As soon as I have the agenda, registration form and other details I will put the links on here.

by tony morgan (Jul 16)

Hi sandy,
His there a national cml meeting this year , like the one in glasgow last year?

by sandy craine (Sep 13)

There is a CML patient group that meets regularly at Kings College Hospital.

Joanna Large is the CNS who helps organise the meetings along with the CML patient committee.

If you would
Category: Uncategorised

Replies: 2

Last updated: 19 July 2013
chrissie on 12 September 2012

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Replies: 7

Last updated: 15 September 2012

Patience
by tony morgan (Sep 15)

Hi I to like the idea of meeting people with cml, I was going down to hammersmith today ,but at the last minute decided was just to fare,his there a meeting sandy in the near future which his closer

by Barb (Sep 14)

Hi - I live in East Devon and also like the idea of meeting up in the area. I was diagnosed 4 years ago and am treated in Exeter. This website is really helpful - and inspirational.

Barb

by kate32 (Sep 13)

Hello I am in Bristol and like the idea of having something a bit more local every so oftan. I am heading up to the London thing this Sat so hope to meet a few others then, never been to one before

by sandy craine (Sep 13)

Hi Jeff, Chrissie, Ali,

I know that Ali was very keen to start a S/W support group some years back. If you feel there is a need (and I am sure there is) how about setting up an informal group
Category: Uncategorised

Replies: 7

Last updated: 15 September 2012
Ali Loram on 12 September 2012

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Replies: 5

Last updated: 2 October 2012

Hickman line
by sandy craine (Oct 2)

Hi Ali,
I am sure everyone here will all be thinking of you when you start your treatment next week- I will visit your caringbridge diary to check how your are feeling.
From my own experience of pre

by Ali Loram (Oct 2)

Hi & many thanks for the advic & info. As you have said the insertion was ok, wouldnt like doen too often though! had a bleed during sunday night so had to return yesterday to have the

by Peter Miles (Sep 24)

Hi Ali

I had my Hickman line put in with a local anaethsetic - a little weird with the pushing sensation as it was inserted but no real worries.

My first one fell out while I was having

by sandy craine (Sep 12)

Hi Ali,

Actually, I agree with Susan- it was much less stressful than I had feared.
However, I did not have sedation- the reason being that they needed me to be alert in case there was a
Category: Uncategorised

Replies: 5

Last updated: 2 October 2012
sandy craine on 11 September 2012

Category: Uncategorised

Replies: 4

Last updated: 13 September 2012

Guardian Newspaper -special supplement- Wed. 12th
by sandy craine (Sep 13)

Thanks Will,
I have now put the link to the whole supplement on the Home Page.
best, Sandy

by wkeeping (Sep 13)

Sandy,
Thank you for this. Great article!
It looks like the whole supplement is available online at: http://www.mediaplanet.com/uk/ under latest publications. (Specific link is http://doc.

by Olivia (Sep 12)

It's good to see what you look like, Sandy! An interesting section of the paper.

by gizmos mum (Sep 11)

Thank you for Sandy for letting us know, i will certainly be buying a copy tomorrow.
Category: Uncategorised

Replies: 4

Last updated: 13 September 2012
gizmos mum on 10 September 2012

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Replies: 8

Last updated: 11 September 2012

1st BCR-ABL test results
by teddyb (Sep 11)

I too had a bad rash, but it subsided within 2 months for me.
I remember i was worried about the same thing you were, but it was "just" a side effect of the Glivec. I took an antihistamine (like

by sandy craine (Sep 11)

Hi Julie,
You know I'm going to say don't worry -particularly about the rash as it is a very commonly reported side effect of imatinib. You should be able to deal with it with a short course of

by gizmos mum (Sep 11)

Hi Sandy

Thanks for encouraging help. I was actually diagnosed 15th May, started treatment towards end of May and the test i have just had was the 3 months one (taken 13 weeks after starting

by sandy craine (Sep 11)

Hi, your 1st PCR test shows a significant reduction of your PH+ cells - you have had a major cytogenetic response within less than 3 months given that you were diagnosed at the end of May.....
Category: Uncategorised

Replies: 8

Last updated: 11 September 2012
sandy craine on 10 September 2012

Category: Uncategorised

Replies: 1

Last updated: 17 September 2012

Survey page
by sandy craine (Sep 17)

See new Survey 2

by sandy craine (Sep 10)

For those who are interested in taking part in Surveys there are now 3 on the Survey Page link (on left hand lower main menu)
Survey 1: asks for your feedback on the agenda for the patient and carer
Category: Uncategorised

Replies: 1

Last updated: 17 September 2012
sandy craine on 9 November 2012

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Replies: 2

Last updated: 9 November 2012

Eye health
by sandy craine (Nov 9)

Thanks Bill.... glad you found it useful. I have edited the link as you suggested.

Sandy

by wkeeping (Nov 9)

Sandy,
Thanks for yet another useful post! Minor point - I think the "Mercola.com" at the end of the link has crept in by mistake. Link works as http://products.mercola.com/eye-support/
Bill

by sandy craine (Nov 9)

An interesting video on eye health through diet/supplement - for those who suffer with eye bleeds as a side effect of TKI it might be of some interest.
http://products.mercola.com/eye-support
Category: Uncategorised

Replies: 2

Last updated: 9 November 2012
Steven Davies on 4 September 2012

Category: Uncategorised

Replies: 2

Last updated: 12 September 2012

Andrew Lansley has gone
by JeffMowatt (Sep 12)

Apparently care minister Norman had threatened to resign over the Health and Social Care Bill, but is now in support of greater private involvement in the NHS.
I recall that I was trying to raise

by sandy craine (Sep 5)

Yes but Jeremy Hunt?
sent from afar in internet cafe in Skopels Island, Greece. ;0)

by Steven Davies (Sep 4)

Thank goodness this man is no longer involved with health
Maybe now the NHS can get its priorities correct. Next thing is to get rid of NICE
Category: Uncategorised

Replies: 2

Last updated: 12 September 2012