You are here

Forum

chris murphy on 23 July 2008

Category: Uncategorised

Replies: 4

Last updated: 1 August 2008

Foreign Holidays
by sandy craine (Aug 1)

Dear Ali,
200mg is below the internationally agreed effective dose of imatinib/Glivec for an adult.

I suggest that you ask to be referred to an CML centre of excellence so that you can be

by Ali Loram (Jul 31)

Hi Chris, sorry to hear about Brians upset tum, mine has been very bad since being on Glivec (dx sept 07). I have been quite greedy with holidays this year (making up for lost time!) having

by sandy craine (Jul 24)

dear Chris,
maybe it would be an idea for Brian to talk to his doctor about splitting the dose? I understand that he is on Sprycel and this might not be possible but given that this side effect is

by Janet (Jul 24)

Dear Chris
I am sorry to hear that Brian has problems of the bathroom kind! However, my suggestions on holidays abroad would be just to say 'Go for it!!'.
Granted, I don't have any digestive
Category: Uncategorised

Replies: 4

Last updated: 1 August 2008
Andy Parkin on 21 July 2008

Category: Uncategorised

Replies: 3

Last updated: 25 July 2008

Plasma Level monitoring
by Tufty3 (Jul 25)

Hi Andy
That's great news for you and some excellent ammunition for those of us who really would like to have the test done, to see if an increased dose would help, before being taken off Glivec.
I

by sandy craine (Jul 22)

Dear Andy,

This is such good news. I am so pleased for you. Your example will really be of benefit to those who are currently experiencing either sub-optimal responses or intolerable side

by Janet (Jul 21)

Congratulations Andy, I am so pleased to see that your PCR has dropped on 600mg. It worked very quickly for you too!
It is also good that you do not have too many side effects.
Enjoy the summer -

by Andy Parkin (Jul 21)

Forum readers, Re my recent post on BCRABL/ABL % ratio and plasma testing, and Kenny's post re PCR test results, I just wanted to provide feedback for the Forum on the plasma test I had some while
Category: Uncategorised

Replies: 3

Last updated: 25 July 2008
Phil Poole on 20 July 2008

Category: Uncategorised

Replies: 3

Last updated: 5 August 2008

Result of Split Dosing.
by fehr (Aug 5)

I split my 400mg dose into two after breakfast and evening meal. I've been doing this for over a year and it seems to have reduced side effects significantly. PCR results are excellent.
John

by sandy craine (Jul 21)

Hi Phil,

I am glad your particular side effect has been helped by splitting the dose. It may well be that because of less digestive upset your drug levels would remain higher for longer... and

by julie hubbard (Jul 20)

Glad things are on the up. My son has always taken imatinib morning and evening (since oct 06) just for ease. It would be interesting to know how they gauge the dose as my son is 11 years old and

by Phil Poole (Jul 20)

Hi everyone,
I thought I would post that my PCR after 3 months of split dosing 600 mg Imatinib into 300 mg twice a day, appears to have worked. Not only are the toilet visits less frequent, and more
Category: Uncategorised

Replies: 3

Last updated: 5 August 2008
julie hubbard on 17 July 2008

Category: Uncategorised

Replies: 12

Last updated: 5 February 2011

glivec and food
by chrissie (Feb 5)

Hi Everyone

I have a rather silly question. We, Glivec takers, are not supposed to drink grapefruit juice as it affects the absorbtion of the medication. I have religiously avoided eating

by hoofinruth (Sep 11)

Thanks Sandy for your kind advice.
I'll certainly talk over your suggestions with her.
Ruth

by sandy craine (Sep 10)

Hi Ruth,

I am so sorry your mum is suffering so badly. To have developed an ulcer is really unfortunate and I am sure that Glivec does not make this condition any better!

You could

by hoofinruth (Sep 9)

I've just seen this thread and thought I'd add my observations with regard to my mother who has CML and is on Glivec.
It seems that there's an increasing range of food she can't tolerate any longer
Category: Uncategorised

Replies: 12

Last updated: 5 February 2011
teresa on 16 July 2008

Category: Uncategorised

Replies: 4

Last updated: 20 July 2008

HRT?
by teresa (Jul 20)

teresa

Thanks for your inputs and thanks for the link Sandy. I think I'll try that rather than the HRT. I don't like the idea of it all coming back when you stop the HRT,I'll be even older and

by sandy craine (Jul 17)

You might want to consider a natural 'progesterone' cream rather than HRT which contains the pharmaceutical product called 'progestergen'
I have used natural progesterone cream for several years now

by Des (Jul 16)

I was on HRT for 4 years post hysterectomy. I started the Glivec 4 months after the HRT and there were no problems. I had to come off the HRT because the GP likes it that way, for all patients not

by skiinglaketahoe (Jul 16)

Hi Teresa
I am on it post transplant, patches, wonderful, no more hot flushes.
Susan
Category: Uncategorised

Replies: 4

Last updated: 20 July 2008
Bill Lubbock on 14 July 2008

Category: Uncategorised

Replies: 2

Last updated: 14 July 2008

toe and finger nails whilkst on Glivec
by Bill Lubbock (Jul 14)

Thanks Sandy. I'll post a note nextweek bout how I got on. Am at present way on holiday but will be seeing my GP next week.

by sandy craine (Jul 14)

hi Bill,

firstly let me say that I am so glad your terrible rash has now resolved and is a side effect of the past! that's great news, considering you were so affected by it that you were

by Bill Lubbock (Jul 14)

Does anyone else have this problem? It seems that my nails are deteriorating fast and my big toe nails look as if they are about to

come off!!

Any advice? I am sure it is one of the
Category: Uncategorised

Replies: 2

Last updated: 14 July 2008
chris murphy on 14 July 2008

Category: Uncategorised

Replies: 3

Last updated: 15 July 2008

cml and teeth
by kestrel (Jul 15)

Hi,

Rio had his 8 remaining 'baby' teeth out last November because they were all in a bad state of repair. It left him with too many gaps to be able to eat properly! Dental consultant had the

by Coyney (Jul 14)

Hi all,
I'm 27 and was diagnosed at 24 although I'm not on any medication as I had a successful transplant 2.5 years ago. A year or so before diagnosis 4 of my back teeth on the bottom started to

by Pennie (Jul 14)

Hello Chris and Brian
I have had terrible problems with my teeth since I have had CML, diagnosed in 2001. For some time now they have been in need of constant attention. Although most Docs say its

by chris murphy (Jul 14)

Hi.

My husban Brian 64 is the cml patient and was dx 18 months ago. No longer on glivec as intolerant, transferred to Dasatanib 8 months ago and it is easier although there is no escaping the
Category: Uncategorised

Replies: 3

Last updated: 15 July 2008
Steven D on 11 July 2008

Category: Uncategorised

Replies: 2

Last updated: 12 July 2008

NEWSFLASH. CML Patient Seminar November 2008
by Pennie (Jul 12)

Thanks for the info Steve, Bill and I hope to see everyone there.
Hope you and Carol are Ok.
ATB

Pennie

by Barbs (Jul 12)

Hello Steven,

yes Elizabeth told me about this, I hope to come this year, London's much easier for me to get to than Scotland & it will be nice to see everyone again.

Elizabeth also

by Steven D (Jul 11)

Hi All,
I thought you all might like to know that I have just heard that the CML patient seminar will be held on 15th November 2008 at the Royal College of Physicians in London. We wait for further
Category: Uncategorised

Replies: 2

Last updated: 12 July 2008
sandy craine on 8 July 2008

Category: Uncategorised

Replies: 2

Last updated: 11 July 2008

'Yours' magazine for older women - a chance to share your story of Glivec and CML
by sandy craine (Jul 11)

Thanks to those who responded. Your details are with the magazine and they will be in contact directly with you.
Sorry Keith,

sometimes it just does not pay to be a man does it? ;o))))

by keith Pratt (Jul 10)

Hi Sandie

Bit sexist or what ?

Keith

by sandy craine (Jul 8)

We have received an enquiry from 'Yours' magazine who are writing a feature on targeted therapies which will include Glivec.

They were wondering if anyone would like to be interviewed for the
Category: Uncategorised

Replies: 2

Last updated: 11 July 2008
sharon morris on 7 July 2008

Category: Uncategorised

Replies: 9

Last updated: 29 August 2008

Baby girl
by sandy craine (Aug 29)

Hi Sarahjane,

Novartis are in the process of setting up a pregnancy registry for maternal Glivec birth outcomes. They hope to have this set up by the end of the year. It is great that you had

by sarahjane (Aug 28)

I was also lucky to have a baby whilst just being diagnosed with CML in the November 2004, then I was pregnant by the June in 2005. It was a very tense time as I was told that Mathew would be one of

by sandy craine (Aug 1)

Dear Jan,

I am sure there are members of this forum that will be more than pleased to read your news.

There has been news of 4 baby girls in the last few months or so (see KennyD's post

by sharon morris (Jul 31)

Hi Jan,
Good to hear from you again!
Many congratulations on the birth of your second daughter. Delighted for you and your family! A lovely name! My oldest daughter is called Kiera Marie and is now
Category: Uncategorised

Replies: 9

Last updated: 29 August 2008
JJ on 7 July 2008

Category: Uncategorised

Replies: 1

Last updated: 7 July 2008

Shingles
by sandy craine (Jul 7)

Hello Janice....... so sorry you are suffering with this but it is very common post bmt/sct. I had shingles in the same place... around 1.5 years after my sct. I was having homeopathic therapy at

by JJ (Jul 7)

I have not posted for a very long time. I had a bone marrow transplant 4.5 years ago and have been attending clinic on a 3 monthly basis. Earlier this year my consultant took me off valaciclovir and
Category: Uncategorised

Replies: 1

Last updated: 7 July 2008
SwanValleySue on 7 July 2008

Category: Uncategorised

Replies: 2

Last updated: 10 July 2008

New Website for Young Adults Leukaemia Patients and Family
by SwanValleySue (Jul 10)

Hello Everyone,
This is a great website that you can have heaps of information

Questions were asked on CML and Exercise on the CML talkbloodcancer chat website.
I just wanted to let you know

by sandy craine (Jul 8)

Hi Sue,

thanks for the link... I have added it to our links page under patient groups.
best wishes,
Sandy

by SwanValleySue (Jul 7)

Just to advise that the Australia TalkBloodChat Website

has launched a new website for young adults.
Really interactive / great sites and lots of hints.
Hints and information not just for
Category: Uncategorised

Replies: 2

Last updated: 10 July 2008
KennyD on 2 July 2008

Category: Uncategorised

Replies: 6

Last updated: 4 July 2008

New baby! and broken bones...
by sandy craine (Jul 4)

Novartis are currently compiling data on Glivec and pregnancy. As soon as I hear from them I will post here.

the data is only on women and pregnancy as the issues do not seem to be as relevant

by SwanValleySue (Jul 3)

Kenny
Yes that would be very useful - any info - I am sure as time goes on -there maybe other people who would benefit from your information
Sue

by KennyD (Jul 2)

also, when I tried to find info on Glivec pregnancies some 18mths ago, info was really sketchy as I remember. I managed to get some info from Novartis in the end. Since then, I've heard of several

by KennyD (Jul 2)

Yeah, my onc has talked about doing some kind of study, based around fertility analysis. Since I started the drug, the sperm count has dropped dramatically . I think 2 kids is probably enough
Category: Uncategorised

Replies: 6

Last updated: 4 July 2008
KennyD on 2 July 2008

Category: Uncategorised

Replies: 2

Last updated: 8 July 2008

TWISTER trial
by sandy craine (Jul 8)

I have posted a new article under Newswire which covers this subject.

Thanks to Giora from the Israeli group for sending it to me.
best wishes,

Sandy

by sandy craine (Jul 3)

Hi Kenny,

I have heard of a few studies in Europe where patients in MMR for over 2 years are stopping Glivec. Those that stay in remission (without any therapy) seem to be the patients that

by KennyD (Jul 2)

Hi - Does anyone know anything about the 'TWISTER' trial, being carried out in Australia? It's looking at what happens when people in MMR come off Glivec completely. I can't find much about it on
Category: Uncategorised

Replies: 2

Last updated: 8 July 2008
KennyD on 2 July 2008

Category: Uncategorised

Replies: 9

Last updated: 20 August 2008

Another PCR test results posting!
by KennyD (Aug 20)

Thanks for the comment Andy - yeah, agreed. We'll see what the next test brings in a month's time or so!

Kenny

by Andy Parkin (Aug 16)

Kenny, Congrats on latest PCR result. As you say the .13% was just a blip in the downward trend. The earlier posts on your original e mail were spot on in terms of the error factor in PCR results

by KennyD (Aug 11)

Hi All,
By means of a quick update on my situation for those who are interested...read on...
As per the first posting on this thread, my 3-monthly PCR test results were;
15.36% 1.02% 0.382% 0.204% 0

by zaviemiller (Jul 6)

First, a big
Y A H O O O !!! Y I P P E E E !!!

Number 1205 in the Zero Club

Zavie
The margin of error on PCR tests is 1/2 log. Your results are well within this limit and are very
Category: Uncategorised

Replies: 9

Last updated: 20 August 2008
sue on 1 July 2008

Category: Uncategorised

Replies: 6

Last updated: 7 July 2008

platelets do they work ?
by sandy craine (Jul 7)

I spoke with my consultant about this has is not aware that this is a problem with Glivec, although he says it is a problem with cml (platelet function that is). He suggested that a platelet

by SwanValleySue (Jul 5)

Thanks for authorisation
Will paraphrase and see if we can get heaps of further responses.
I posted One for the Gals - and the responses came out fo the woodwork - so it is an issue for all of us.

by sue (Jul 3)

susan dickerson In response to posting this on your site the sooner we get some answers to this big problem the better and if all the ladies having similar problems can pursue this with their

by sue (Jul 3)

susan dickerson In response to posting this on your site the sooner we get some answers to this big problem the better and if all the ladies having similar problems can pursue this with their
Category: Uncategorised

Replies: 6

Last updated: 7 July 2008
Michael.. on 18 June 2008

Category: Uncategorised

Replies: 12

Last updated: 30 June 2008

Am I normal!!!
by Michael.. (Jun 30)

Thanks once again for all the info, which looks like it could be helping others as well. So couldn't be more pleased.
For me, ive been feeling pretty well for the last week or so, been more active

by mariansy (Jun 22)

vickie
I attend King's and travel up from Haywards Heath. I have PCR's from blood every 3 months (Approx)and a BMA annually.
Timings wise - my last BMA was done at 11am - so avoiding the full fare

by mariansy (Jun 22)

vickie
I attend King's and travel up from Haywards Heath. I have PCR's from blood every 3 months (Approx)and a BMA annually.
Timings wise - my last BMA was done at 11am - so avoiding the full fare

by vickiep (Jun 21)

Hi Sandy,

Thanks for bothering as much as you have with your response to me!

You are absolutely right that Eastbourne DGH does not have a CML unit, but when I see them, they do a blood
Category: Uncategorised

Replies: 12

Last updated: 30 June 2008
Carol on 17 June 2008

Category: Uncategorised

Replies: 1

Last updated: 6 August 2008

4th Patient Support Group Meeting At Hammersmith Saturday 9th August 2008.
by Steven D (Aug 6)

Thank you Carol for moving this post up, as I had forgotten that the group meeting was this weekend.
Hope to see everyone there.
Steven D

by Carol (Jun 17)

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road

London W12 0HS
SATURDAY 9th August 2008

10.00AM For 10.30AM – 1.00PM
This will be the fourth meeting of
Category: Uncategorised

Replies: 1

Last updated: 6 August 2008
Sylvia Smith on 14 June 2008

Category: Uncategorised

Replies: 6

Last updated: 23 June 2008

Feverfew & CML
by sandy craine (Jun 23)

There will be a trial of this drug in the UK in the coming months. I am trying to find out more and will let you know when I have details.

Sandy

by Sylvia Smith (Jun 22)

Yes, several CML victims I read are combining the two with no ill effects. Some are combining Feverfew with Curcumin with good results......I am taking Feverfew daily along with Nilotinib/Tasigna

by Sylvia Smith (Jun 22)

Hello Sue
Just tap into Google Feverfew and cancer or Feverfew and CML and take it from there. Lots of research being done in America and Canada which sounds promising. Keep well

Sylvia (

by valandi (Jun 17)

Have a look at http://www.cmlsupport.org.uk/?q=node/573
for some more information
Category: Uncategorised

Replies: 6

Last updated: 23 June 2008
garym161 on 14 June 2008

Category: Uncategorised

Replies: 7

Last updated: 31 July 2008

Bone Marrow Transplants?
by masmot (Jul 31)

if got related donor better

by Bill Yellowley (Jun 21)

kestrel

Thanks very much for taking the time to reply. Yes I have read some of Rio's entries on here with great interest. I hope everything went well yesterday. I admire his bravery, Being so

by kestrel (Jun 20)

Hi Janet

Yes - please!!!

kestrel

by Janet (Jun 19)

Hi Kestrel
Just to wish Rio all the very best for his BMT, and to you also as you will be going through the mill as well!
Take care and think of how wonderful it will be when he is told he is PCRU.
Category: Uncategorised

Replies: 7

Last updated: 31 July 2008