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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
Des on 7 February 2008

Category: Uncategorised

Replies: 2

Last updated: 7 February 2008

radioactive isotopes & CML
by leslie chambers (Feb 7)

Hi Des,

I was at HH on Monday for a total body PET scan, and was injected with a radioactive isotope mixed with a glucose carrier. I asked my doctor all about it and was assured it was safe,

by sandy craine (Feb 7)

hi Des,

yes i agree that you should question methods. when i was having my 'workup' to my transplant i had to have some sort of test which used radioactive isotopes. i think it was called a

by Des (Feb 7)

After much spine, hip and leg pain,totally dissimilar to that caused by the Glivec, I am to have a bone scan. I have been told that an iv injection of radioactive isotopes will be used to
Category: Uncategorised

Replies: 2

Last updated: 7 February 2008
Fenton on 2 February 2008

Category: Uncategorised

Replies: 9

Last updated: 7 February 2008

Can someone explain log reduction to me?
by julie hubbard (Feb 7)

Hi sandy thanks for telling me about the childrens site. i am registered on that. i will try jerrys site later. i don't get much chance to get to the site very often due to being a single parent,

by sandy craine (Feb 6)

hi Julie,

have you joined the 'children with CMl' site ...see direct link on left of page.... which Jayne set up last year? the site has a forum for parents/carers and also one just for the

by sandy craine (Feb 5)

Dear Julie,

first let me say that it is great news that your son has achieved molecular remission.

as for your question, as long as he can tolerate the adult dose (paedratric doses tend

by zaviemiller (Feb 5)

Hi Julie,
Could you please write me at zmiller@sympatico.ca
Zavie
Category: Uncategorised

Replies: 9

Last updated: 7 February 2008
Fenton on 2 February 2008

Category: Uncategorised

Replies: 9

Last updated: 27 February 2008

New to this site
by Fenton (Feb 27)

Welcome to the CML site.

I am so glad you at last have a diagnosis after all those months of feeling unwell and that you have been able to start on Glivec and so far have not had any great ill

by Fenton (Feb 27)

After diagnosis, it took me 9 months to read stuff about CML on the internet site. I just read through my BACUP book and got on with it. I did feel rather alone because its not a very common

by sandy craine (Feb 19)

hi Fernando and welcome to this forum. if you need any advice or support please do not hesitate to ask here. there is great hope for people diagnosed with CML. read as much as you can and you will

by fselman (Feb 18)

I am a chilean astronomer working at an European Observatory based in Chile. I was diagnosed with CML 28 Jan 2008, just two and half months before my 50th birthday. Previous to this I had been in
Category: Uncategorised

Replies: 9

Last updated: 27 February 2008
Pennie on 2 February 2008

Category: Uncategorised

Replies: 1

Last updated: 3 February 2008

Nilotinib/AMN107 - enact trial
by sandy craine (Feb 3)

hi pennie,

thanks for sharing your experience of nilotinib. we have not had many people on this forum who have been willing to share their experience of this alternative to Glivec.

i am

by Pennie (Feb 2)

I have started on this trial(in Jan)due to Glivec intolerance. Dose 8oomg,400mg twice a day.
After fighting for Glivec in 2001 - 2002, alongside so many others who are early members of this forum, I
Category: Uncategorised

Replies: 1

Last updated: 3 February 2008
sandy craine on 29 January 2008

Category: Uncategorised

Replies: 3

Last updated: 10 July 2012

for Tamaguci - Itchy eyes- Homeopathy-
by shantelle1109 (Jul 10)

Homeopathic remedies are safe to use, and yes i have used them during and after my therapy with Glivec to counter the side effects and also during my stem cell transplant to offset the effects of

by sandy craine (Feb 25)

hi Fernando,

yes, taking herbal supplement of St. John's Wort is contraindicated with taking Glivec.... and maybe other TKI's like Sprycel (dasatinib) and Tasigna (nilotinib)?
however... using

by fselman (Feb 18)

I am no expert on this (I was diagnosed with CML only a month ago) so I will throw this comment so somebody else might advice. It is my understanding that Hypericum (St John's Wort) is one of the

by sandy craine (Jan 29)

Hi Tamaguci,to answer your question from the discussion thread on the side effect of 'sore eyes' further down the page....
Homeopathic remedies are safe to use, and yes i have used them during and
Category: Uncategorised

Replies: 3

Last updated: 10 July 2012
Dennis on 24 January 2008

Category: Uncategorised

Replies: 11

Last updated: 31 January 2008

MP's reply to Dasatinib
by sandy craine (Jan 31)

Hi Paul, yes i do agree with you about the effects of devolution starting to be felt. i am hopeful that NICE will give a positive appraisal of both dasatinib and nilotinib, which will at least

by Paul Cooke (Jan 31)

Hi Sandy,
Unfortunately, patients are getting caught between the politicians, NICE, and NHS management.

In addition, the whole issue of devolution is beginning to have an impact. I have heard

by sandy craine (Jan 31)

hi Paul, thanks very much for you clarification and the breakdown of the costs of dasatinib compared to imatinib. it is very helpful to see those figures in print and as you say it really does

by Paul Cooke (Jan 30)

I note the comments about the discrepancies within the home countries of the UK - this is something we'll all have to learn to 'live with' as devolution really begins to hit, and have an impact upon
Category: Uncategorised

Replies: 11

Last updated: 31 January 2008
mariansy on 22 January 2008

Category: Uncategorised

Replies: 4

Last updated: 23 January 2008

PCR up
by zaviemiller (Jan 23)

YAHOOO!!! YIPPEEE!!!

Number 1145 in the Zero Club

Zavie
Reaching CCR gets you into the Zero Club
Zavie Miller (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd

by zaviemiller (Jan 22)

Hi Marian,
Could you send me you email address?
Zavie
zmiller@sympatico.ca
Zavie Miller (age 68)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/01 (400

by mariansy (Jan 22)

Thanks Sandy
I really appreciate the reassurance. I do however know that King's want to increase my dose as I haven't got down to a 0.0?? in two years. Perhaps they'll just opt for 600 instead - at

by sandy craine (Jan 22)

Hi Marian,

I am not sure if you should panic just yet. the rise in your pcr is not that much and may not be significant. you should also wait until you get another result to compare as it may
Category: Uncategorised

Replies: 4

Last updated: 23 January 2008