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denisetaylor on 29 December 2007

Category: Uncategorised

Replies: 17

Last updated: 10 January 2008

sore eyes.
by Tamaguci (Jan 10)

Hi Sandly
Thank for you advice. I don't have any experience with homeopathic remedlay. It is your advice ob base of your heal with this substance ? In which form is Euphrasia (tablet) ?
Regards

by sandy craine (Jan 9)

i cannot directly answer your first question as to 'why' Glivec affects the eye's in this way, but it is a common side effect.
you can try to alleviate the symptoms with a homeopathic remedy called

by Tamaguci (Jan 6)

Hi
I was dx in August 2003 and have been on Gleevec since September of that year.

In this time the only side efect is bleeding eyes which happens two or three time on one year.

At the

by Basil from RSA (Jan 4)

I was dx in June 2003 and have been on Gleevec since Dec of that year.

I also suffered from a great deal of eye bleeds, especially in my left eye. I occasionaly had them in the right eye, but
Category: Uncategorised

Replies: 17

Last updated: 10 January 2008
sandy craine on 26 December 2007

Category: Uncategorised

Replies: 3

Last updated: 1 January 2008

Happy New Year!
by jaynelister (Jan 1)

Happy and healthy New Year.
Much love
Jayne x

by Lorraine Rollo (Dec 31)

Happy and healthy New Year to all at cmlsupport.
Here's to many more
Lorraine x

by Mike Ashley (Dec 29)

Thank you Sandy.

The years fly by , those dark days before Glivec seem a distant memory sometimes
Happy new Year to everyone and never give up hope

by sandy craine (Dec 26)

On behalf of the CML Support Group I would like to Wish you all a Happy and Healthy New Year!
Sandy
Category: Uncategorised

Replies: 3

Last updated: 1 January 2008
kathy on 24 December 2007

Category: Uncategorised

Replies: 2

Last updated: 24 December 2007

MERRY CHRISTMAS
by Dennis (Dec 24)

Merry Xmas Kathy. Missed your emails!

by Coyney (Dec 24)

Hi Kathy,
How have you been?
I hope you all have a great christmas and better new year.
Take care,

Martyn
Please sponsor me!

by kathy (Dec 24)

Just like to say merry christmas and a happy healthy new year,and thank you for the continious support on this forum,

love kathy
Category: Uncategorised

Replies: 2

Last updated: 24 December 2007
Richard on 17 December 2007

Category: Uncategorised

Replies: 2

Last updated: 17 December 2007

CML, IHD, chronic diarrhoea and enlarged spleen
by donnaberry (Dec 17)

Hi Richard,

I was dx this May and suffer from time to time with a swollen spleen (I have had an ultrasound on it twice so know it is larger than normal). Of course when I was diagnosed my

by sandy craine (Dec 17)

hello Richard,
with an enlargement of your spleen it may be a sign of some further problems with CML.
as you do not give details of your recent blood counts it is very difficult to advise but i

by Richard (Dec 17)

Hi, everone, and may I firstly wish you good health!
I am 58, and I played rugby until I was 34 (on the wing) and I have been suffering from ischaemic heart disease for over 21 years (heart attack
Category: Uncategorised

Replies: 2

Last updated: 17 December 2007
Gillian on 13 December 2007

Category: Uncategorised

Replies: 1

Last updated: 14 December 2007

Lost email address
by zaviemiller (Dec 14)

elainehardie AT msn DOT com

by Gillian (Dec 13)

My computer has crashed and I haven't been able to log on for a while. Also I have lost my email addresses. Could I ask Elaine Hardie from Scotland to send me her email address as I would like to
Category: Uncategorised

Replies: 1

Last updated: 14 December 2007
Janet on 8 December 2007

Category: Uncategorised

Replies: 10

Last updated: 20 December 2007

Prescription Costs...
by Paul Cooke (Dec 20)

There's a lot of debate about frequency of monitoring, and also what monitoring is done when.
In my wife's case, she has an annual bone marrow biopsy. This is for full range of tests I believe FISH

by Anna (Dec 19)

Hi all, hope everyone is doing ok and looking forward to Christmas!

I am treated at Addenbrookes too, but I have not had a biopsy for almost 2 years.....I did wonder if this was normal?? I had

by Steven D (Dec 12)

I asked the question at this years seminar and there was some slight disagreement as to how often you need to have one. All the consultants were of the opinion that once you PCR results were very

by Lorraine Rollo (Dec 12)

Hi Sue - Hope you are all well 'up north'. When I moved down here Addenbrookes were not sure whether I would still need to have bone marrow biopsies but have now decided that I should continue to
Category: Uncategorised

Replies: 10

Last updated: 20 December 2007
Flora on 2 December 2007

Category: Uncategorised

Replies: 9

Last updated: 18 December 2007

How do you cope with cml?
by Michael Behn (Dec 18)

Hello Everyone,
I was diagnosed with CML in February this year and have been taking Glivec since then. I am new to this helpful website and have just received news that the Glivec is not going as

by Flora (Dec 9)

Hi Elizabeth

I have taken a while to reply as I have been reading your diary. It is certainly inspiring and it is wonderful to hear that you are doing so well now and enjoying those precious

by Elizabeth Rees (Dec 6)

Hi Flora

You mention grandchildren and this was the first thing that came to my mind when I was diagnosed back in early 1999 in pre Glivec days - the thought that I may never get to see mine

by Flora (Dec 5)

Hospital days are one of my downers too but I cope with it by going out for lunch after. I nice wee treat to get the spirits up again. Only my appointments are stretching further and further apart
Category: Uncategorised

Replies: 9

Last updated: 18 December 2007
Annie Kennedy on 29 November 2007

Category: Uncategorised

Replies: 8

Last updated: 24 February 2008

CML and informing the DVLA
by claire hall (Feb 24)

It has been a few months since I last posted on the site (“pregnancy I hope!”) but have been keeping up to date with your comments.
I am very pleased to announce the safe arrival of my baby daughter

by Annie Kennedy (Dec 1)

Many thanks to all of you who replied. You will be impressed to hear that, buoyed by your support, we went back to the insurance company, told them the full story and they were quite happy for us

by keith Pratt (Dec 1)

Hi everyone

Dealing with this problem for a friend of mine, who does not have cml, but he has been told to advise the DVLA that he is considered unfit to drive. On reading the bumff that comes

by Belinda Whitting (Nov 30)

hi annie, iv just applied for a driving license for my son& dont know if this helps but no type of cancer was on the medical list that came with it.it was conditions like epilepsy, diabetes,
Category: Uncategorised

Replies: 8

Last updated: 24 February 2008
nosila on 29 November 2007

Category: Uncategorised

Replies: 10

Last updated: 12 December 2007

pcr tests
by Steven D (Dec 12)

Hi

I think we met in Edinburgh at the social evening. Its nice that you have had a good response to your post. This is basically what I said to you that you need to have Brian seen at Glasgow

by nosila (Dec 12)

Hi Christine & Brian,

We live in darvel and attend Ayr hospital,Dr Eynaud is great, we dont want to transfer to glasgow if we don't have to,after speaking to others and dr holyoake we were

by CHRISTINE MURPHY (Dec 6)

Hi David

Thank you for your response, it was very helpful. We will certainly have to follow up going to Glasgow, which we will do. Thank you to everyone else for their help. It is a

by David (Dec 5)

Christine
Our story might help you if the funding for PCRs does not come through in January.
Val was diagnosed at Stoke Mandeville Hospital in Buckinghamshire. At the time, they had only a handful
Category: Uncategorised

Replies: 10

Last updated: 12 December 2007
sandy craine on 28 November 2007

Category: Uncategorised

Replies: 1

Last updated: 28 November 2007

letter to MP-regarding Dasatinib/Nilotinib NICE appraisal
by russ whales (Nov 28)

Sandy - I have already emailed my MP (Nicholas Soames) and he has written to Alan Johnson raising these points and has promised a written response to me. Needless to say he is very supportive.
Russ

by sandy craine (Nov 28)

I have just received a reply from my MP in which she states she is very supportive of the initiative to overcome the post-code lottery by cml patients. she says she is going to write to the DH
Category: Uncategorised

Replies: 1

Last updated: 28 November 2007
sandy craine on 28 November 2007

Category: Uncategorised

Replies: 5

Last updated: 5 December 2007

Drug adherance
by sandy craine (Dec 5)

thank you all for your ideas and thoughts about this subject. even the words used to describe an individuals willingness to embrace their therapy and be 'good' are rather proscriptive.

by Paul Cooke (Dec 5)

Hi,

As a Pharmacist, I am very much aware of the problems with non-compliance to medication regimes. I see patients who are not uncommonly on upwards of 12 or more medicines!!I would defy

by kestrel (Dec 4)

Hi Sandy,
A reply from the perspective of a carer for a young CML patient.
The psychological impact on a teenager of being told that he could have to take a drug FOR LIFE to maintain his health is

by sandy craine (Nov 29)

hi David, thanks for your feedback and thoughts on this issue. i thought that you would be interested in an excellent new report from the United States on the scope of the treatment non-adherence
Category: Uncategorised

Replies: 5

Last updated: 5 December 2007
Andytyneside on 27 November 2007

Category: Uncategorised

Replies: 5

Last updated: 19 December 2007

Having to have a BMT. I'm a bit frightened/worried by it all
by PAUL (Dec 19)

Andy drop me a line on your progress. My wife is now at day 100 and doing fine at Newcastle cheers Paul.paul724@msn.com

by Andytyneside (Nov 28)

Thanks for the reply guys
It's put my mind at rest knowing that it's worth doing. It's just like a big scary rollercoaster at the moment. I'm sure it will be good for me in the long run.
Anyway, I'

by sandy craine (Nov 27)

hi andy,

please read my diary.... i had a mini in october 2003... due to a glivec mutation.
this form of transplant is very safe and much easier to 'do' than the traditional one. there are 4

by russ whales (Nov 27)

Andy
Had a mini SCT (BMT) 3 years ago at age 52 - now well and free from cml. I was resistant to glivec and no other drugs were readily available. Happy to share my full story with you - there were
Category: Uncategorised

Replies: 5

Last updated: 19 December 2007
Steven D on 23 November 2007

Category: Uncategorised

Replies: 4

Last updated: 29 November 2007

Your feedback please.- Houston House Seminar, Edinburgh -
by Annie Kennedy (Nov 29)

Just wanted to add my thanks too - thoroughly enjoyed the CML support evening - what a great bunch we all are...! The evening was great and it was lovely to chat to so many people - made the

by angela (Nov 28)

I would just like to say thank you to Elizabeth, Steven & Carol for all the work that went in to making Friday and Saturday a enjoyable, informative weekend.
It was lovely meeting up with old

by kestrel (Nov 28)

I'd like to echo what has been said above - thank you so much - the whole weekend was an immensely informative and uplifting experience for us. What a wonderful bunch of people we met!!

by CHRISTINE MURPHY (Nov 25)

Would just like to say that we really enjoyed Friday and Saturday, it was so good to speak to others coping with cml. Friday night was so friendly and for first timers not too daunting. Saturday
Category: Uncategorised

Replies: 4

Last updated: 29 November 2007
keith Pratt on 23 November 2007

Category: Uncategorised

Replies: 4

Last updated: 28 November 2007

PCR Results
by sandy craine (Nov 28)

hi Keith, great news- after so many years i am not surprised that HH are interested in what is going on ;o)

best to you and Carol.

love,sandy ;o)

by keith Pratt (Nov 26)

Hi

Thank you very much, will be more than extatic when I go to HH again on 9th January 2008 and the trend is confirmed, maybe even lower ?? Will keep you advised

Hope you enjoyed

by jaynelister (Nov 26)

Hi Keith,
Im really pleased for you that your levels are coming down. Wonderful news!
Jayne

by Elizabeth Rees (Nov 25)

Keith, words fail me to tell you how happy I am for you after all this time. Enjoy and much love to you and Carole.

Elizabeth xx
Category: Uncategorised

Replies: 4

Last updated: 28 November 2007
Elizabeth Rees on 22 November 2007

Category: Uncategorised

Replies: 1

Last updated: 22 November 2007

CML Support Social Evening - Friday 23rd Nov - Edinburgh
by Barbs (Nov 22)

Dear Elizabeth,

glad to hear that you had a good holiday.

Just to say that I hope that all goes well this weekend, I got a mail from Dr N yesterday, he's got everything ready &

by Elizabeth Rees (Nov 22)

Hi everyone

Looking forward to meeting all of you attending the CML Support Social Evening in Edinburgh. Would be lovely if we could all aim to meet at around 7pm in the Strathbrock Suite - I
Category: Uncategorised

Replies: 1

Last updated: 22 November 2007
zaviemiller on 21 November 2007

Category: Uncategorised

Replies: 1

Last updated: 22 November 2007

CML Seminar - Edinburgh - Taxi Sharing.
by angela (Nov 22)

Hi Zavie
My flight doesn't arrive till 12.45 so please don't hang around for me. I found out that's the taxi fare is around about £20 and takes 15-20 minutes. Looking on the map Uphall Broxhburn

by zaviemiller (Nov 21)

Hi Angela et al,
I will be arriving at 10:00 AM Friday. It would be fun to share a taxi ride to the conference. A city tour would also work for me.
Zavie
Contact me at
e-mail: zmiller@sympatico.ca
Category: Uncategorised

Replies: 1

Last updated: 22 November 2007
angela on 17 November 2007

Category: Uncategorised

Replies: 4

Last updated: 20 November 2007

CML Seminar - Edinburgh - Taxi Sharing.
by angela (Nov 20)

Hi Barbara
Yes you did tell me a while back that won't be able to make it this year. Have a lovely time Saturday evening. I'll email you soon.
Take care
Angela

by angela (Nov 20)

Hi Bee & Ted
Sorry you not going to be there this year. Glad to hear that Ted's doing well. I'm not doing too bad either my last pcr was 0.014 which I'm very pleased with.
Hopefully see you

by Bee (Nov 19)

Hi everyone
Sorry but we won't be able to attend the Seminar this year, but would probably have been on the same flight, Angela! To those that do make it - have an great time and we'll see you all

by Barbs (Nov 18)

Hi Angela,

I'm so sorry that I won't be able to come next weekend - it would've been lovely to see you all again, but it's my husband's 40th birthday on the Sunday & we're having a do on
Category: Uncategorised

Replies: 4

Last updated: 20 November 2007
Bram on 16 November 2007

Category: Uncategorised

Replies: 2

Last updated: 17 November 2007

Got blood test results, Can anyone tell me if they are good enough
by zaviemiller (Nov 17)

Y A H O O O !!! Y I P P E E E !!!
Number 1130 in the Zero Club
Zavie
Well done Bram. You have achieved CCR (Complete Cytogenic Response) and that is good enough to get you into the Zero Club. From

by cmlblogger (Nov 16)

however i am not a doctor or specialist!
down to 0.28% in 7-8 months does sound good
I think that is a "Complete cytogenetic response" "occurs when out of 20-50 marrow cells, no cell with a Ph

by Bram (Nov 16)

Hi to you all,

I have been on Glivec for 7-8 months since diagnosis and recently had blood sent off to be tested. (This was following a marrow sample which didnt show any positive cells/ 100
Category: Uncategorised

Replies: 2

Last updated: 17 November 2007
Don Adkins on 15 November 2007

Category: Uncategorised

Replies: 5

Last updated: 21 December 2007

Three year post-transplant visit update
by jaynelister (Dec 21)

Hi Don,
I just wanted to let you know that I havent forgotten about you and I have e mailed Aaron's Consultant, who has been away on leave.
How are things now?
Regards
Jayne

by Don Adkins (Nov 22)

Thanks Jayne....

by jaynelister (Nov 22)

Hi Don,
Sorry to hear about your GVHD.
My Son, Aaron underwent BMT approx 4 years ago and also had severe GVHD of the mouth, and also the gut.
He suffered very badly with no saliva and this caused

by Don Adkins (Nov 15)

Thanks Russ, sounds like the exact plan my doc has for me.
Have a great Holiday season!
Don
Category: Uncategorised

Replies: 5

Last updated: 21 December 2007
David on 14 November 2007

Category: Uncategorised

Replies: 2

Last updated: 15 November 2007

Sprycel in England and Wales/Scotland
by David (Nov 15)

Western Provident Association have now put more information about the QC's Opinion on their web site. The link is:
WPA Press Link
David

by sandy craine (Nov 14)

Hi David,

thanks for posting this article.... it is extremely interesting and points to the difficult situation that the government would find itself in if cancer patients took this legal

by David (Nov 14)

The very unfortunate situation at present that some PCTs in England and Wales will not fund Srycel (Dasatinib) is highlighted again today in an article in The Times. The Scottish Medicines
Category: Uncategorised

Replies: 2

Last updated: 15 November 2007