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Dennis on 18 January 2008

Category: Uncategorised

Replies: 8

Last updated: 21 January 2008

Coming off Glivec
by Dennis (Jan 21)

Oh and David - I'll be very interested to know how you and Val go on. Thanks.

by Dennis (Jan 21)

To everyone who has responded, thanks - you have ALL made some very interesting and useful points.

I had better start by explaining as briefly as possible, my position. I was diagnosed 14

by sandy craine (Jan 21)

hi Dennis,

as you can see from the replies to your post, this is a contentious issue and how patients experience side effects, as far as i can see, is the main reason for doctors to consider a

by David (Jan 21)

Dennis - this dose reduction idea is a bit of a conundrum for us all to understand, particularly given the minimum stated clinically effective dose.
We saw David Morin at the Hammersmith just before
Category: Uncategorised

Replies: 8

Last updated: 21 January 2008
David on 13 January 2008

Category: Uncategorised

Replies: 2

Last updated: 19 January 2008

Thank you for Fund Raising
by Steven D (Jan 19)

I would like to thank Val very much for taking a role in the fund raising at the Stowe Golf Club.
Many people do not realise how much time and effort goes into organizing such events and for that

by sandy craine (Jan 16)

Hello David,

thank you for putting the link on this forum. As you know I have written to the Ladies Section of the Stowe Golf Club to thank them for their donation.

Best wishes to both

by David (Jan 13)

This post is to say a huge thank you to the Ladies of Stowe Golf Club, where my wife, Val, is a member, for their fund raising activities in 2007 on behalf of CML Support Group. They raised £1,550
Category: Uncategorised

Replies: 2

Last updated: 19 January 2008
johnh on 13 January 2008

Category: Uncategorised

Replies: 2

Last updated: 16 January 2008

Dasatinib & Nilotinib Approval - MP Response
by sandy craine (Jan 16)

Hi John and Dennis,
I too have had replies to my letters. One from a civil servant at the DH which told me very little that I didn't already know, and one from my local MP who kindly included the

by Dennis (Jan 14)

Thanks for posting that. I haven't recieved a reply yet, but no doubt it will be exactly the same as yours.

The question that needs asking after that response is: well what are you doing to

by johnh (Jan 13)

I have now received an answer to my letter to my MP requesting the Government to accelerate NICE approval for Dasatinib and Nilotinib.
The reply from the Minister, Dawn Primarolo MP, is quite long
Category: Uncategorised

Replies: 2

Last updated: 16 January 2008
Janet on 13 January 2008

Category: Uncategorised

Replies: 4

Last updated: 15 January 2008

Travel Insurance 2008
by Janet (Jan 15)

Dear Phil, John and David
Thanks very much for your very helpful advice. Following a call this evening to Age Concern, we now have a family annual world-wide [incl Canada and the USA] travel

by David (Jan 13)

I was dreading the renewal last week of our policy but it proved to be easiy.
I have just renewed an annual policy with worlwide cover, including USA, with Age Concern (underwritten by Fortis) for

by johnh (Jan 13)

Aged 68 with CML, I spent about 18 months trying to get travel insurance at a reasonable price. I eventually changed my home insurance to Norwich Union and they included worldwide, multi trip cover

by Phil Poole (Jan 13)

Janet & others,
I have been using J.D.Consultants, 44, High Street, Farnborough, Kent, for the past 3 years. Telephone 01689 859102, 850333, 856551, 851145, or 856984. I have just received my
Category: Uncategorised

Replies: 4

Last updated: 15 January 2008
Barbs on 11 January 2008

Category: Uncategorised

Replies: 5

Last updated: 20 January 2008

This Year's CML Meeting
by paul.ridley158 (Jan 20)

Paul Ridley
Just wanted to endorse comments about Edinburgh seminar - really useful and great to meet new people and share experiences. Also to repeat our gratitude to Elizabeth and Sandy for their

by Carol (Jan 13)

I would like to endorse David's comments about Elizabeth.
She was a great support to both Steven & I when Steven was Dx with CML her knowledge kindness the fantastic way she is with people

by David (Jan 13)

Barbara
I imagine the reason that Elizabeth no longer has access to the Email addresses is because she is no longer a Trustee of the CML Support Group Charity. As far as I know, the site has not

by Barbs (Jan 12)

Good to hear from you!

I was beginning to get worried.

The kids are fine & I'm still PCR-U (just 10% T8 now).

I'm sorry to hear that you've been under a lot of stress recently
Category: Uncategorised

Replies: 5

Last updated: 20 January 2008
Belinda Whitting on 10 January 2008

Category: Uncategorised

Replies: 4

Last updated: 22 January 2008

tiredness
by Belinda Whitting (Jan 22)

thankyou everyone who answered my questions about tiredness etc. i hope that you are all keeping well & thankyou once again, i dont know what i would do sometimes without this web site to tune

by sandy craine (Jan 11)

hi Belinda,

yes tiredness is a side effect of Glivec therapy... Glivec can affect haemaglobin levels and mine was never higher than 10 when i was taking Glivec. this is really a sub-optimal

by kathy (Jan 11)

hi belinda,i have a problem with tiredness,some days i cant do anything ,i mentioned this to my consultant and he said its a common side effect of the medication,take care,kathy

by kestrel (Jan 10)

Hi Belinda,

So sorry to hear that your husband has some side-effects. I was going to say that I couldnt comment on the yellow tinge and insomnia, but have just looked at the leaflet in the
Category: Uncategorised

Replies: 4

Last updated: 22 January 2008
derren on 9 January 2008

Category: Uncategorised

Replies: 2

Last updated: 17 January 2008

Life Insurance
by skiinglaketahoe (Jan 17)

Hi
My consultant told me that once diagnosed with CML that there was no chance of getting any more life insurance. It will be interesting to hear if you manage to find out differently.
regards
Susan

by cmlblogger (Jan 9)

after being dx'd in december 06 I got a critical illness payout with the provider where I work (Candia Life ISTR), every year we have a flex benefits scheme for everything from life assurance, to

by derren (Jan 9)

Hi Every one
Just wondered if anyone out there could give me some advice. I was diagnosed in August 2007 and it was the spur that made me and the wife get that 'house of our dreams' so I will be
Category: Uncategorised

Replies: 2

Last updated: 17 January 2008
mcgiv on 8 January 2008

Category: Uncategorised

Replies: 3

Last updated: 11 January 2008

Leg swelling
by Debbie (Jan 11)

Hi,

I also suffered from a swollen lower leg, ankle and foot. Its funny how it only happened with one leg, never had the problem with other leg. The problem first started when I was put on

by mcgiv (Jan 9)

Thanks Sandy,will pass on you comments

by sandy craine (Jan 8)

hi,

it is difficult to advise you as any sort of swelling which cannot be easily explained should really be investigated by a doctor. i am sure your son-in-laws doctor would be willing to talk

by mcgiv (Jan 8)

My son-in-law being treated with Glivec for CML has developed swelling in one leg. Doctor recommened course of steroids. What would cause this swelling and would steroids be the answer
Category: Uncategorised

Replies: 3

Last updated: 11 January 2008
hcy0da on 7 January 2008

Category: Uncategorised

Replies: 4

Last updated: 9 January 2008

Mouth Bleeds
by Dennis (Jan 9)

I too get blisters in the roof of my mouth that very quickly bleed. I thought that it had to do with the thinning of the skin,caused by Glivec.

by Des (Jan 8)

I too get blood blisters in my mouth, again after eating something salty or rough, like crisps, French Bread etc. Some of them are pretty big, ulcers too are far more prevalent.
As I never had them

by sandy craine (Jan 8)

hi,

mouth ulcers can respond to increased vitamin C and/or a general vitamin and mineral supplement. you may be a little 'run down' if you have suffered from any recent colds or flu.

as

by Debbie (Jan 8)

Hi,

I get what I would call blood blisters. They usually appear after if have bitten the inside of my mouth or after I have eaten something hard or sharp. They go away within a day or
Category: Uncategorised

Replies: 4

Last updated: 9 January 2008
kestrel on 6 January 2008

Category: Uncategorised

Replies: 6

Last updated: 13 January 2008

Dasatinib trials
by kestrel (Jan 13)

Thank you to all who replied - some food for thought there. pcrs have been bobbling around - as low as 0.39 at one point, but now up to 0.7 and awaiting another result in 1/2 weeks. Psychological

by keith Pratt (Jan 12)

Hi Kestrel

Same happened to me, have been on Dasatinib for just over a year, but only on a low dose due to platlets that have had too much punishment. I plateaued at about 80%-ve with Glivec,

by Michael Behn (Jan 8)

M.P.Behn
Hi Kestrel and Rachel
My name is Teresa and my husband Mike was diagnosed with CML in Feb 07. He began his treatment with Glivec but has now built up a resistance to it and is now in the

by sandy craine (Jan 8)

hi Kestral,

i am sorry to hear that Rio is suffering more side effects from the increase Glivec. his pcr will probably take a little longer to show any effect from the larger dose so do not
Category: Uncategorised

Replies: 6

Last updated: 13 January 2008
garym161 on 1 January 2008

Category: Uncategorised

Replies: 14

Last updated: 14 January 2008

Just diagnosed
by carmeplas (Jan 14)

Hi Gary,
sorry to hear these news. David (my husband) is 34 now, he was diagnosed at JUne 2007. Doctor discover CML just by a routine lab test, as he had no symptoms except for night sweatings.

by Hannah Bracegirdle (Jan 14)

Hannah Bracegirdle
Hi Gary, I was diagnosed in Oct 2007, I found out after having a routine blood test because Im pregnant. So it was a massive shock. My wbc was 116. I didnt really and still

by jaynelister (Jan 7)

Hi Garry,

Im sorry to hear of your diagnosis but please feel some comfort that you have found the right place for information and support.
My Son was diagnosed at the age of 15 with CML and I

by RACHEL HALSALL (Jan 5)

Hi Gary,

Just read your earlier post and noted that you are being treated at Blackburn. We live in Bolton, just down the road and my Gary was being treated at Bolton. Currently he is being
Category: Uncategorised

Replies: 14

Last updated: 14 January 2008
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