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valandi on 10 March 2008

Category: Uncategorised

Replies: 2

Last updated: 11 March 2008

12 months on
by sandy craine (Mar 11)

Hi Phil and Val,

Congratulations on Val's latest results.

It is good to read good news. Thanks for sharing your story which is a very positive one and I am sure will help others who are

by zaviemiller (Mar 11)

YAHOOO!!! YIPPEEE!!!

Number 1169 in the Zero Club

Zavie

by valandi (Mar 10)

Val was dx last January, the day after our youngest daughter's 21st birthday, following a blood test for an unrelated viral infection, with an wbc count of 30, PH+ of 84% and 146,000 transcripts.
Category: Uncategorised

Replies: 2

Last updated: 11 March 2008
Vanessa Priest on 7 March 2008

Category: Uncategorised

Replies: 4

Last updated: 12 March 2008

Dasatinib & Nilotinib in the UK
by skiinglaketahoe (Mar 12)

Hi Rachel,
I hope that your husband is doing well with the dasatanib and the PCR is coming down and that the side effects are tolerable.
Thank you so much for the lovely message that you left in my

by RACHEL HALSALL (Mar 12)

My husband went onto Dasatanib in October 2007 because his PCR was rising on Glivec. We initially had to go to Manchester for the treatment but now alternate between Bolton and Manchester as Bolton

by Vanessa Priest (Mar 11)

Thanks Sandy. It's quite worrying that not all Countries work at the same pace!

But thanks for the info, makes me feel at little 'secure'.

Vanessa

by sandy craine (Mar 10)

hi Vanessa,

dasatinib (Sprycel) is licenced and available in most parts of the UK for use in Glivec resistant/intolerant chronic stage CML.

however it has not yet had a NICE appraisal so
Category: Uncategorised

Replies: 4

Last updated: 12 March 2008
fehr on 6 March 2008

Category: Uncategorised

Replies: 4

Last updated: 13 March 2008

Questioning your Onc.
by fehr (Mar 13)

Thank you Sandy and Anjana. This was actually my local (North Hampshire Hosp.) doctor, but I am very pleased that I am also being monitored at Hammersmith. I had not realised the PCR was being

by sandy craine (Mar 10)

Hi John, many congratulations on your great response.... and also on your level headedness regarding the 'rise' in your white count.

i am also treated at HH and find that the doctors there

by anjana (Mar 8)

Dear John,
Congratulations on your good results. Anything below 0.05% at Hammersmith is considered to be safe from relapse. Congratulations for reaching this milestone in Gleevec therapy and in

by fehr (Mar 7)

I've just received a letter from Hammersmith telling me that at the time of the first blood test above, my RT-PCR was 0.037%.
By my arithmetic, that's a 3.4 log reduction after 9 months.
Sounds good
Category: Uncategorised

Replies: 4

Last updated: 13 March 2008
Bhiru on 6 March 2008

Category: Uncategorised

Replies: 5

Last updated: 9 March 2008

Support through the hard times
by johnw1001 (Mar 9)

Hi Bhiru

Just a few points that might help in your situation.I have been dx for just over a year now and as a patient the initial shock is difficult to deal with not only for oneself but for

by zaviemiller (Mar 7)

Hi Bhiru,
Other than medication, the best lifter upper for a CML patient that I know is to meet other CML patients. In a roomful of CML patients and their partners you have to ask who is the one

by skiinglaketahoe (Mar 6)

Hi Bhiru,
It is nice to 'meet' you.......
I often think that it is at least as hard to support somebody with CML as it is to be the patient. I am certain that you are not alone. I don't think there

by Pennie (Mar 6)

Hi Bhiru, Feeling down and fed up is quite usual when given a diagnosis of CML. For me, diagnosed in Sept 2001, life was very difficult for many months afterwards. I found it really helpful to
Category: Uncategorised

Replies: 5

Last updated: 9 March 2008
Phil Poole on 6 March 2008

Category: Uncategorised

Replies: 1

Last updated: 7 March 2008

Brief Update - Letter to MP
by sandy craine (Mar 7)

Hi Phil,

thanks in advance. it will be interesting to see if DP comes up with any new words and/or phrases ;o)

Sandy

by Phil Poole (Mar 6)

Dear all,
I received a brief update from my MP today. she states that she has written to Dawn Primarolo MP, Minister of State for Public Health re the NHS funding of Dasatinib and Nilotinib. I will
Category: Uncategorised

Replies: 1

Last updated: 7 March 2008
suzanne on 4 March 2008

Category: Uncategorised

Replies: 11

Last updated: 9 March 2008

Trip to Cuba
by johnw1001 (Mar 9)

Hi Sue

Just to reassure you that travel is possible despite having CML and having to still take the medication .I was told that as long as my blood counts were within normal range there was no

by zaviemiller (Mar 7)

as previous post

by zaviemiller (Mar 7)

as previous post

by zaviemiller (Mar 7)

Y A H O O O !!! Y I P P E E !!!
Number 1165 in the Zero Club
Zavie
I have to commend your doctor for his dosing of John. Dr. Mauro of OHSU has shown that the minimum effective dose of Gleevec is
Category: Uncategorised

Replies: 11

Last updated: 9 March 2008
skiinglaketahoe on 1 March 2008

Category: Uncategorised

Replies: 1

Last updated: 3 March 2008

3 years since diagnosis
by sandy craine (Mar 3)

hello Susan,

you have certainly experienced and achieved a lot since your diagnosis and i wish you the very best for the future.

as someone who has also had a mini allograft i understand

by skiinglaketahoe (Mar 1)

Good morning
I am sitting here in sunny London thinking about 3 years ago today. That was the day I was diagnosed with CML. It was the first time I heard those now oh so familiar words. Naturally
Category: Uncategorised

Replies: 1

Last updated: 3 March 2008
Phil Poole on 29 February 2008

Category: Uncategorised

Replies: 3

Last updated: 3 March 2008

Letter to MP
by sandy craine (Mar 3)

Dear John, well done in keeping your MP updated and asking for her continued support in asking questions.
the appraisal will definitely be an MTA and not a STA. NICE have assured me of that. and

by johnw1001 (Feb 29)

Hi Sandy,

Answers to Anne Miltons first set of PQs were posted under a previous thread on 21 Feb and other readers may have seen these.

Anne has written to me to say that if we are not

by sandy craine (Feb 29)

Dear Phil, thanks so much for taking this up. i hope my update was clear and you were able to change the original template to reflect the changing position.
the more MP's that speak out the better.

by Phil Poole (Feb 29)

I am no expert, but have used the Dasatinib/Nilotinib template letter, and updated the current state of play from the Newswire of 27 Feb. I will be sending it to my local MP for Mid Bedfordshire,
Category: Uncategorised

Replies: 3

Last updated: 3 March 2008
carmeplas on 27 February 2008

Category: Uncategorised

Replies: 5

Last updated: 29 February 2008

Headache
by sandy craine (Feb 29)

i think that this might be a good way to really prove if David is suffering from side effects of Glivec or if there is some other problem.

the cluster headache you describe could be migraine

by anjana (Feb 29)

Dear Carmen,
All the patients I know who had fluid in the lung had breathing difficulties. And this is rare with Gleevec as is cerebral edema but of course it can happen in rare cases. There is

by carmeplas (Feb 28)

Hi Anjana,
Yes he is still with the chest pain. He visit another doctor, for a second opinion,his Electrocardiogram was clean as so the blood test (he is in 5,000 WBC, and 14 of Hb, no anaemia, no

by anjana (Feb 28)

Dear Carmen,
I am sorry to hear that David still has the chest pain. Have you thought of seeking a second medical opinion?
Anjana

wife of Roy

d/x Jan 2002

400mg Gleevec
Category: Uncategorised

Replies: 5

Last updated: 29 February 2008
keith Pratt on 24 February 2008

Category: Uncategorised

Replies: 10

Last updated: 28 February 2008

PCR on 20th February
by anjana (Feb 28)

Dear Keith,
I am so glad to hear you are doing well on Dasatinib and have reached PCR 2-log. Wishing you all the best onto PCR 3-log.
Anjana

wife of Roy

d/x Jan 2002

400mg

by Fenton (Feb 27)

I also feel the cold really bad since starting on Glivec for CML. (Dx May 2007).

Sometimes I am ages wearing my coat in the house when I get home from being out. Esp feel the cold in my feet.

by leslie chambers (Feb 26)

There must be something in this coldness business,there are just too many of us reporting it,just to say we are getting old is the easy option to explain it. Has there been any study of it? As far

by keith Pratt (Feb 26)

Thank you all for your kind comments. I am told that my cold feet are the stuff of legend, perhaps I have got used to it ? Hands also tend to be on the frozen side, but also I now do not notice them
Category: Uncategorised

Replies: 10

Last updated: 28 February 2008
sandy craine on 20 February 2008

Category: Uncategorised

Replies: 1

Last updated: 22 February 2008

NICE answers my questions about the MTA for dasatinib and nilotinib
by sandy craine (Feb 22)

i have heard that some PCT's in England have advised doctors that they should not consider putting patients on the ENACT (nilotinib)trials because they will NOT fund Tasigna.

the ENACT trials

by sandy craine (Feb 20)

to all those who are following this campaign please see the thread a little further down the page, started by Andy Parkin.
from the email i received today from NICE, there is still obviously a need
Category: Uncategorised

Replies: 1

Last updated: 22 February 2008
sandy craine on 20 February 2008

Category: Uncategorised

Replies: 7

Last updated: 4 March 2008

new member -Fernando- reposted from a previous thread
by fselman (Mar 4)

I just wanted to give my thanks for all the words of encouragement. I have been on Glivec a bit over a month now and the latest blood exam show that my counts are nearly normal. Not mayor side-

by sandy craine (Feb 22)

Hi Don,

i am glad to hear you are not too bothered by the gvhd but it must be wearisome at times. i am sure it will get better as the years go by and i hope you will find some sort of (

by Don Adkins (Feb 21)

hi Sandy,
it's always great to hear from you. I know how active you are -- and busy.
my gvhd is hanging around. i still have to take a blast of steroids on occasion to knock it back, but it isn't

by sandy craine (Feb 21)

hi Don,

how are you doing? hope all is well and your symptoms of gvhd have improved?

love,

Sandy ;o)
Category: Uncategorised

Replies: 7

Last updated: 4 March 2008
Phil Poole on 18 February 2008

Category: Uncategorised

Replies: 6

Last updated: 23 February 2008

Split Dose Imatinib
by fehr (Feb 23)

DX April 2007. After a few weeks of misery, I split my 400mg dose morning and evening after food and it helped a lot. Up to now, it has seemed to be working OK.
John

by zaviemiller (Feb 21)

Phil,
Could you please contact me at zmiller@sympatico.ca
Thanks,
Zavie
Zavie Miller (age 68)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/01 (400

by zaviemiller (Feb 21)

Hi Julie,
Your son qualifies for a number in the Zero Club
YAHOOO!!! YIPPEEE!!!

Number 1157 in the Zero Club

Zavie
Could you please contact me at zmiller@sympatico.ca
Zavie Miller (

by kathy (Feb 20)

Thank god im not the only one with this problem,i go to the toilet at least 5 times aday(nice),and when you gotta go you really do need to go there and then.I take the 600mg altogether so i will
Category: Uncategorised

Replies: 6

Last updated: 23 February 2008
amanda on 18 February 2008

Category: Uncategorised

Replies: 1

Last updated: 19 February 2008

continue discussion on pre-menopause
by sandy craine (Feb 19)

hi Amanda,

i am glad to hear the alternative therapy has helped you so quickly. it may be expensive but from the sounds of it it is entirely worth it for your peace of mind and happiness.

by amanda (Feb 18)

Hi All
After my last post, i decided to try alternative therpy.
On friday i had Acupressure which is pressure applied using finger and palm it stimulates QI mobilization to regian Yi-Yang balance in
Category: Uncategorised

Replies: 1

Last updated: 19 February 2008
sharon morris on 15 February 2008

Category: Uncategorised

Replies: 5

Last updated: 21 February 2008

Update
by jaynelister (Feb 21)

Hi Sharon,
This is just SO heartwarming. Congratulations to you and well done!
Jayne x

by zaviemiller (Feb 21)

Hi Denise,
Could you please contact me at zmiller@sympatico.ca
I think there is a Zero Club number waiting for you. I just want to make sure I haven't assigned you one yet.
Zavie
Zavie Miller (age

by amanda (Feb 19)

Hi Sharon
What wonderful news, were has the time gone?? i am so pleased for you and your family.
take care

love amanda

by Denise (Feb 18)

How wonderful to hear about someone who is living such a 'normal' life with CML. I was diagnosed 2.5yrs ago when 12 weeks pregnant. I carried on with the pregnancy while taking Interferon and now
Category: Uncategorised

Replies: 5

Last updated: 21 February 2008
amanda on 11 February 2008

Category: Uncategorised

Replies: 9

Last updated: 28 February 2008

Pre - menopause
by sandy craine (Feb 28)

hello Steven,

there is a very high percentage of men who experience some enlargement of the prostate generally after the age of 45. this is benign in the majority of cases but it should always

by Steven D (Feb 27)

Hi All
I am just wondering if there is any information available on any problems of prostates problems when taking Glivec. I have been doing some research but not come across anything. Perhaps

by sandy craine (Feb 14)

it is possible that some people have a hormonal imbalance that would cause the symptoms described here. it is also possible to develop such imbalances at any point in your life.

a lot of women

by sue (Feb 13)

susan dickerson

I've been on gleevic for 6yrs and have suffered with heavy monthly bleeds was always regular each month and now am hit and miss really bad stomach cramps night sweats bouts of
Category: Uncategorised

Replies: 9

Last updated: 28 February 2008
cmlblogger on 11 February 2008

Category: Uncategorised

Replies: 2

Last updated: 13 February 2008

Anyone near Reading / Berkshire
by cmlblogger (Feb 13)

i'll drop you an email later today...
rob - http://cmlblog.spaces.live.com

by keith Pratt (Feb 12)

Hi Rob

Not Berkshire, but am in Henley-on-Thames, South Oxfordshire if that helps.

Phone:- 01491 57 29 30

e-mail :- keith.pratt@tesco.net or henleyowboy@hotmail.co.uk

Maybe

by cmlblogger (Feb 11)

Hi there, just wondering if there is anyone who is a carer of someone with CML in or around Berkshire / Reading area?
For my wife who woudl like to talk to someone who is going through the same
Category: Uncategorised

Replies: 2

Last updated: 13 February 2008
Andy Parkin on 9 February 2008

Category: Uncategorised

Replies: 3

Last updated: 22 February 2008

Template letter to your MP regarding NICE appraisal of Dasatinb and Nilotinib
by sandy craine (Feb 22)

hello John,

thanks for copying the correspondance here. it makes for interesting reading. it seems that the DH keep saying that they are waiting for NICE (ie. the report from the consultation

by johnw1001 (Feb 21)

Anne is my local MP (Guildford)and has been very active on health matters for the Conservatives;I have used the templates to inform her of issues that we are concerned with and she has asked the PQ

by sandy craine (Feb 20)

hi Andy,

thanks for your note and continued pressure on your MP.

i have taken a look at the NICE website to try and find if the proposed appraisal has a date. according to the letter my

by Andy Parkin (Feb 9)

Sandy, Thanks for the further template letter for submission to MP's.

On rereading my MP's response to my earlier lobbying letter of November( based on the CML organisation draft), I notice
Category: Uncategorised

Replies: 3

Last updated: 22 February 2008
Carol on 9 February 2008

Category: Uncategorised

Replies: 2

Last updated: 10 February 2008

Patient/ Carers meeting on Saturday 16th February 2008
by David (Feb 10)

Elizabeth & Carol
Thank you so much for setting up this group and organising it in conjunction with staff at the Hammersmith and with their support. We live just a bit too far away to come but I

by sandy craine (Feb 9)

Dear Carol and Elizabeth,

this is a really welcome news and i am really pleased that you have been able to set up a support group at hammersmith. i am sure there will be many people who will

by Carol (Feb 9)

This is the FIRST meeting of the Hammersmith Leukaemia Patient/Carer Support Group on Saturday 16th February 10am – 1pm. We hope that you will be able to attend.
This is a very informal meeting
Category: Uncategorised

Replies: 2

Last updated: 10 February 2008
Phil Poole on 8 February 2008

Category: Uncategorised

Replies: 7

Last updated: 26 February 2008

Donor Match
by PAUL (Feb 26)

Sandy just an update. Although it seems more than 5 month since transplant the time we thought would never arrive finally has,the Dr said Sharon can go back to work in 2 weeks time.We cannot believe

by jaynelister (Feb 14)

Just wanted to say thats great news. Thats half the battle, finding a suitable donor.
Much love to you.
Jayne

by RACHEL HALSALL (Feb 12)

JUST WANTED TO SAY THAT GARY, MY HUSBAND WITH CML, DX JULY 2004 HAS ALSO BEEN TOLD OF A 10/10 MATCH FROM THE THE USA. SHE TOO IS PROVIDING MORE SAMPLES ALTHOUGH GARY IS RESPONDING VERY WELL ON

by sandy craine (Feb 9)

hi Phil, this is really good news and i am sure you are feeling confident now you have another option, even if you never use it!Sandy ;o)
Category: Uncategorised

Replies: 7

Last updated: 26 February 2008