You are here

Forum

richard bolam uk on 22 August 2008

Category: Uncategorised

Replies: 1

Last updated: 24 August 2008

anyone know how i can get a job working in fund raising for a cancer org ?
by sandy craine (Aug 24)

Hi Richard,

try the Third Sector online.... see direct link below for fundraising jobs in health/medical charities... best of luck ;o)

Sandy
...thirdsector-jobs-here

by richard bolam uk (Aug 22)

hi all you fellow club members, time to try and put somthing back i think. i am a 44 yr old highly qualified sales profesional. i would love the chance to do somthing for someone else while i am
Category: Uncategorised

Replies: 1

Last updated: 24 August 2008
Pennie on 21 August 2008

Category: Uncategorised

Replies: 2

Last updated: 22 August 2008

New tretment for AML at the Royal Free
by sandy craine (Aug 22)

....this link explains this study in a little more detail
....camden journal article
Sandy

by skiinglaketahoe (Aug 22)

Always delighted to hear/read publicity for the RFH. They do a 'mean' CML and transplant treatment there as well. The haematology team,

headed by Professor Stephen Mackinnon is excellent,

by Pennie (Aug 21)

Follow the link for info on this pioneering development for the treatment of AML. Fingers crossed this route might lead to developments for CML in the future.
http://www.hamhigh.co.uk/content/
Category: Uncategorised

Replies: 2

Last updated: 22 August 2008
Steven D on 18 August 2008

Category: Uncategorised

Replies: 10

Last updated: 23 August 2008

4th Anniversay today.
by Diana Green (Aug 23)

Diana G
Hi Susan!
You too - and any other celebratory CMLers can enjoy a free bottle on your CML anniversary...the restaurant is part of a national chain called Ego (sorry about the free 'puff' here

by skiinglaketahoe (Aug 22)

Diana
that is audacious...........but it really made me laugh.......good for you!

Enjoy
regards
Susan

by jaynelister (Aug 21)

That is truly great news!
Lots and lots of luck with the new business, hope it all goes well for you - you deserve it.
Much love
Jayne xxx

by Diana Green (Aug 21)

Diana G
My local Italian restaurant offers a free bottle of wine on the anniversary of 'a special date'. My special date was October 11 2006 when I was diagnosed with CML, so I'll be raising a glass
Category: Uncategorised

Replies: 10

Last updated: 23 August 2008
ypoulton on 28 August 2008

Category: Uncategorised

Replies: 1

Last updated: 29 August 2008

fluid round heart
by sandy craine (Aug 29)

Hi Yvonne,

I have not heard of problems with fluid around the heart being caused by imatinib. However there were some reports of a possible link to cardiac side effects last year. I think

by ypoulton (Aug 28)

Just realised I posted my original in the wrong place.

I have fluid round my heart, just wondering if any 0ne else has had this. My local dr is not sure if it is glivec related 400mg daily.
Category: Uncategorised

Replies: 1

Last updated: 29 August 2008
SwanValleySue on 13 August 2008

Category: Uncategorised

Replies: 3

Last updated: 16 August 2008

Explanation of High White Blood Count?
by sandy craine (Aug 16)

As Julie has suggested, you can find information on blood cell counts on the FAQ button on the left hand menu... see snip below:
...White Blood Cell (WBC) count is important to monitor as a

by zaviemiller (Aug 13)

Hi Sue,
A WBC count of 101 at diagnosis time is not that high. Many patients have WBC counts over 500 at diagnosis. Mine was 145.
The normal range for WBC is 4-11. On Gleevec the WBC will often be

by julie hubbard (Aug 13)

the answers you need are listed in FAQ normal is 4-11

by SwanValleySue (Aug 13)

Does anyone know how high your white blood counts should not be

or what is normal.
Can someone answer this question.

This is for a friend - I actually did not get my first couple of
Category: Uncategorised

Replies: 3

Last updated: 16 August 2008
skiinglaketahoe on 12 August 2008

Category: Uncategorised

Replies: 1

Last updated: 21 August 2008

interesting article from this week's Sunday Times
by David (Aug 21)

Susan
Thanks for that article.
I have suggested to Tessa Holyoake that she might want to look at seeking a research grant from the Lady Tata Memorial Trust, whick was established by Sir Dorabji

by skiinglaketahoe (Aug 12)

http://www.timesonline.co.uk/tol/life_and_style/health/article4491852.ece
Susan
Category: Uncategorised

Replies: 1

Last updated: 21 August 2008
Don Adkins on 10 August 2008

Category: Uncategorised

Replies: 1

Last updated: 11 August 2008

Interesting Article from the latest LLS news letter
by sandy craine (Aug 11)

Hi Don,
Thanks for posting this article. I do hope you are well and thriving.
I am reminded that today (August 11th) is the day I took Glivec (then STI 571) for the very first time 9 years ago. I

by Don Adkins (Aug 10)

Hi Everyone,
Although this method of testing can now only be used in research, my guess is that it will be fast-tracked (hopefully) soon
Category: Uncategorised

Replies: 1

Last updated: 11 August 2008
kathy on 9 August 2008

Category: Uncategorised

Replies: 1

Last updated: 11 August 2008

hemoglobin
by sandy craine (Aug 11)

Hi Kathy,
It really depends on the individual. An hgb count of under 10 is usually considered low. 10.8 is not too bad but it does depend on what you are used to.
I found that when I was taking

by kathy (Aug 9)

Hi all,had an appointment yesterday and my hb was 10.8 is this quite low,thanks guys.
Category: Uncategorised

Replies: 1

Last updated: 11 August 2008
fehr on 5 August 2008

Category: Uncategorised

Replies: 1

Last updated: 6 August 2008

Side effects advice
by sandy craine (Aug 6)

Dear John,

Thanks for sending this post. I am sure it will be of help to many who read this forum. I will copy it if you don't mind and put it on a more permanent page, that way your effort

by fehr (Aug 5)

I picked this up from the US Leukemia and Lymphoma Society forum and thought it may be some use here.
John

-------------------------------------
There are a lot of side affects that come with
Category: Uncategorised

Replies: 1

Last updated: 6 August 2008
anhenbo on 7 August 2008

Category: Uncategorised

Replies: 4

Last updated: 28 August 2008

side effects
by ypoulton (Aug 28)

Hi all

Not posted for quite some time but need some advice just come back from seeing doc and it seems I have fluid round my heart at the moment he's not sure if it is glivec related and is

by sandy craine (Aug 15)

It might be worthwhile doing a little research on this amino acid and its possible use in peripheral neuropathy
...Acetyl-L-carnitine has been evaluated in a pilot study by Maestri and colleagues[43

by anhenbo (Aug 7)

Hi Sandy
Thanks for the quickest respons ever.

Om August 18 I will see my docter in Amsterdam and discuss the possibilities for measuring plasma levels.

by sandy craine (Aug 7)

Good to hear from you.
There have been a few posts about neuropathy as a side effect of Glivec/imatinib. You can find them by using the search box... just type in neuropathy.
It may be that your
Category: Uncategorised

Replies: 4

Last updated: 28 August 2008
Rick Anderson on 29 July 2008

Category: Uncategorised

Replies: 1

Last updated: 1 August 2008

ALL & MDS
by sandy craine (Aug 1)

Hi Rick,

Thanks for sharing your story here. I must say you have endured a lot and I do not envy you the decision to go for a transplant. However you are aware of the consequences of 'sticking

by Rick Anderson (Jul 29)

Hello to everyone in this very special club where all members are leukemia patients.

I was initially diagnosed with leukemia while serving with the US State Department in Lagos, Nigeria. That
Category: Uncategorised

Replies: 1

Last updated: 1 August 2008
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