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fileokingsley on 5 November 2012

Category: Uncategorised

Replies: 2

Last updated: 6 November 2012

Hello
by sandy craine (Nov 6)

As Alastair has already said, please let us know if you need any advice regarding CML, your diagnosis and/or treatment options.
Best wishes,

Sandy

by Alastair C (Nov 5)

Hi - feel free to let us know anything about CML which is worrying you. We have all been helped by people on this board, and are happy to help the new members of the club to which none of us made a

by fileokingsley (Nov 5)

Hi. I am new here.
Category: Uncategorised

Replies: 2

Last updated: 6 November 2012
jacqui from Col... on 3 November 2012

Category: Uncategorised

Replies: 1

Last updated: 8 November 2012

Weight loss on Nilotinib
by clive walpole (Nov 8)

Hi Jacqui,
I've been on Nilotinib for a couple of years now and have lost a couple of stone. I think it's from the fact that I don't snack as much as I used to because of the fasting. Hope this

by jacqui from Colchester (Nov 3)

Just wondering if anyone else has lost weight taking Nilotinib it would be comforting to know
Regards to you all
Jacqui
Category: Uncategorised

Replies: 1

Last updated: 8 November 2012
kathy on 29 October 2012

Category: Uncategorised

Replies: 1

Last updated: 29 October 2012

joint pain
by sandy craine (Oct 29)

Hi Kathy,
maybe try magnesium oil. see my post on this below. Otherwise you could try requesting a change of therapy to a 2nd gen TKi as it is related to long term side effect of imatinib.
Sandy

by kathy (Oct 29)

Hi all,havent posted for a long time,its been 9years since i was diagnosed.Justa quick question,what do you take for joint pain,havent had it this bad since i first went on glivec,even though it
Category: Uncategorised

Replies: 1

Last updated: 29 October 2012
ni2i on 29 October 2012

Category: Uncategorised

Replies: 8

Last updated: 13 November 2012

PCR result over the moon
by joflo (Nov 13)

Well done : ))))

by karen (Nov 2)

That is great news.

kx

by Don Adkins (Nov 2)

It's time to party.....well done.
Cheers,

Don

by david_a (Oct 31)

well done! Definitley worth celebrating and being chuffed about.
Category: Uncategorised

Replies: 8

Last updated: 13 November 2012
MaggieT on 26 October 2012

Category: Uncategorised

Replies: 3

Last updated: 27 October 2012

A new member
by MaggieT (Oct 27)

Thanks for the words of encouragement

by marsy (Oct 27)

Hi Maggie

Welcome to the club that nobody really wants to be a member of, if we had the choice !!
As Sandy mentions,all of us who log into this site have gone through exactly the same as you

by sandy craine (Oct 27)

6 months is not very long from diagnosis and I am not surprised you are finding it difficult to come to terms with your diagnosis.
Many members of this forum (and there are up to 7500 individuals

by MaggieT (Oct 26)

Hey there,
Just wanted to introduce myself.
I got diagnosed with CML six months ago. I'm responding well to treatment, but have found coming to terms with the diagnosis and how to manage living with
Category: Uncategorised

Replies: 3

Last updated: 27 October 2012
nigel on 24 October 2012

Category: Uncategorised

Replies: 2

Last updated: 25 October 2012

Complete Cytogenetic Remission, a good day...
by sandy craine (Oct 25)

Dear Nigel... that's great news, many congratulations. I can feel your relief!

I hope you and your family take time to celebrate you reaching this important goal.

Very best wishes,

by Olivia (Oct 25)

Well done Nigel - it's great to know the drugs work, isn't it? Hope to meet you in Glasgow.

Olivia

by nigel (Oct 24)

Got my result from my 12 month bone marrow biopsy today : Complete Cytogenetic Remission, really over the moon.
Hope all are well, and looking forward to Glasgow Nigel
Category: Uncategorised

Replies: 2

Last updated: 25 October 2012
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