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RodM on 20 October 2012

Category: Uncategorised

Replies: 2

Last updated: 24 October 2012

Moving to Greenwich...
by RodM (Oct 24)

Thanks, Sandy, I'll ask at my next visit.
Rod

by sandy craine (Oct 20)

Hi Rod, I think your nearest would be Kings? There are quite a few members of CMLSg who are currently treated there so I expect they will be able to advise better than I.
I recently moved to East

by RodM (Oct 20)

Hi
I'm moving to Greenwich fairly soon and I wondered if anyone had a recommendation for which hospital to get referred to.
I assume that if I do nothing, I'll just get allocated to a hospital trust
Category: Uncategorised

Replies: 2

Last updated: 24 October 2012
sandy craine on 20 October 2012

Category: Uncategorised

Replies: 3

Last updated: 18 April 2013

Jeanine is Running For CML Support Group
by Steven Davies (Apr 18)

Hi
Janine is now in top gear to run the Marathon on Sunday lets give a final helping hand to get her one her target.

You can make a donation at her just giving site.
Thanks to those of you who

by Steven Davies (Feb 22)

Hi. Janine's training is going well. As you my realise Janine is running for CMLSUPPORT. Please encourage her by visiting her

Just giving site and help reach her target and go beyond it.

by Steven Davies (Oct 21)

Janine has very kindly offered to run and raise money for CMLSupport.

It would be nice to get a group together and go and cheer her on, on the day.

Nearer the time we will make plans to

by sandy craine (Oct 20)

After the initial shock of discovering I had been ‘fortunate!’ enough to win a ballot place for the London Marathon 2013, I realised it would be a wasted opportunity if I didn’t try to raise money
Category: Uncategorised

Replies: 3

Last updated: 18 April 2013
Spitfire on 18 October 2012

Category: Uncategorised

Replies: 4

Last updated: 21 October 2012

Home remedies for side-effects
by sandy craine (Oct 21)

For those who are/might be interested in learning more about symptoms of low magnesium and how to best supplement with this important mineral, please take a look at the following link to

'

by Spitfire (Oct 19)

Thanks for the tip I will give this a go too! I do get cramp in my toes sometimes, and my joints are a bit odd as well, not sure if this is just old age setting in!
Good to hear about your tennis,

by sandy craine (Oct 19)

Alastair,good to hear some feedback about using MagOil to counter side effects such as cramps, joint pain etc. Thanks also for the tip about buying through Amazon.I will try that in future- I still

by Alastair C (Oct 19)

Sue, quite a few people have (at Sandy's suggestion) used magnesium oil to help specifically with cramp. I play tennis 3-4 times/week, and do suffer from cramp more since I started glivec (over 5
Category: Uncategorised

Replies: 4

Last updated: 21 October 2012
Jayne on 9 October 2012

Category: Uncategorised

Replies: 3

Last updated: 11 October 2012

Just looking in on everyone
by sandy craine (Oct 11)

Hi Jayne,

I am pretty sure they would take blood from Aaron, even though he is only seen yearly. Transplant patients need to be monitored just like everyone else, so I understand why you would

by Jayne (Oct 10)

Hi Sandy, and thank you! I hope that you are well and I can see from the site, keeping busy as always. Aaron is now seen at the Q.E. in Birmingham but only goes once a year for a general check up.I

by sandy craine (Oct 10)

Hi Jayne, good to hear from you and thanks for the update on Aaron. Please give him my congratulations on getting his degree. He deserves it all, he came through what was a very difficult situation

by Jayne (Oct 9)

Hi All - I just wanted to look in on everyone to say hello and see how everyone is doing. There are so many new members here, many of who I don't know, so just to recap - my Son, Aaron, was
Category: Uncategorised

Replies: 3

Last updated: 11 October 2012
BJ on 13 October 2012

Category: Uncategorised

Replies: 2

Last updated: 31 October 2012

Extra tablet by accident
by JulieCheshire (Oct 31)

During the first couple of months after diagnosis and starting treatment, my husband sometimes couldn't remember whether he'd taken his medication. He now uses one of the little tablet containers

by sandy craine (Oct 13)

Bill, don't worry. The fact that you have been sick has already removed all of the second dose before your body had a chance to metabolise it. No matter even if you did, there have been doses of up

by BJ (Oct 13)

Hi first time in nearly five years on 400mg imatanib I believe I took my tablet twice (I usually take 400 once an evening tonight I accidentally took two as I didn't remember taking the first one)
Category: Uncategorised

Replies: 2

Last updated: 31 October 2012
gizmos mum on 3 October 2012

Category: Uncategorised

Replies: 4

Last updated: 3 October 2012

Flu vaccination
by Steven Davies (Oct 3)

Hi

Hammersmith Hospital recommend having the flu jab in fact for the last 2 years i had the swine flu jab twice each year.

Also its a good idea to check with your consultant about the

by chrissie (Oct 3)

I have been having this vaccine free from my GP since diagnosis 3 years ago. The research nurses at the hospital say they advise all patients to have it.I'd never had one before CML, but it's been

by gizmos mum (Oct 3)

That's good, thanks. I will ring the GP and see if i can get a free one then!

by nigel (Oct 3)

Hi i had the jab last year for the first time and had no problem ( probably my healthiest winter ! ) mine was given by nurse at GP's, and my wife was given it as well. My consultant told me i should
Category: Uncategorised

Replies: 4

Last updated: 3 October 2012
Catrina on 2 October 2012

Category: Uncategorised

Replies: 14

Last updated: 8 October 2012

Just diagnoised
by vickiep (Oct 8)

Absolutely ditto to Sandy!

by sandy craine (Oct 6)

Hi Jeff, your 'reflections' on how you were feeling pre diagnosis really resonated with me.

I remember I felt so tired but just passed if off and put it down to pushing myself too hard in the

by JeffMowatt (Oct 6)

Hi Catrina,
Looking back, I saw the transition from a poor state of health marked by passing side effect. No nausea or joint pain in my case, but cramps were pretty severe and a skin rash followed.

by ruddoug09 (Oct 4)

Hi Catrina
Welcome to the site - its a great source of information and support!

The aches disappeared after two week son being on Imatinib, they pretty much go over night and you'll hopefully
Category: Uncategorised

Replies: 14

Last updated: 8 October 2012
hcy0da on 1 October 2012

Category: Uncategorised

Replies: 2

Last updated: 2 October 2012

Sensitive Teeth
by sandy craine (Oct 2)

I use a homeopathic mouthwash which seems to keep this at bay. I think we all suffer at some point with this- due to age as well as effects from chemotherapy. I rub my gums with a few drops of

by Michael.. (Oct 2)

I had my transplant about the same sort of time as you. I have pretty much suffered with

sensitive teath since. It is a lot better than it was, I put the improvement down to

Colgates

by hcy0da (Oct 1)

I was wondering if anyone has suffered with sensitive teeth, especially those post transplant?
I am not sensitive to hot and cold but to starchy foods and certain meat and vegetables; it is making
Category: Uncategorised

Replies: 2

Last updated: 2 October 2012
jacqui from Col... on 16 October 2012

Category: Uncategorised

Replies: 1

Last updated: 19 October 2012

First check after changing Nilotinib
by sandy craine (Oct 19)

Hi Jacqui, good news about your lung tests. Hopefully your liver function tests will settle once you have been on nilotinib for a while. All TKIs are processed or metabolised by the liver, it might

by jacqui from Colchester (Oct 16)

Hi Everyone
After my pleural effusions with Dasatinib and Imatinib , I am pleased to report after a month on Nilotinib my lungs are clear. Blood tests did reveal that my liver function is higher
Category: Uncategorised

Replies: 1

Last updated: 19 October 2012
sandy craine on 29 September 2012

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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

Category: Uncategorised

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