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sandy craine on 20 March 2008

Category: Uncategorised

Replies: 1

Last updated: 22 March 2008

Would you like to help MA student with research?
by Rio (Mar 22)

hello sandy
iv emailed carla because i thought of going on a trial and decided not to and kestrel used this site to find out for me..
best of luck in the future
Rio

by sandy craine (Mar 20)

I have been contacted by Carla who is studying for her MA at Leeds University and would like to contact patients who have taken part in clinical trials and who also use online patient support
Category: Uncategorised

Replies: 1

Last updated: 22 March 2008
Flora on 18 March 2008

Category: Uncategorised

Replies: 11

Last updated: 25 March 2008

Is there life after cml?
by johnh (Mar 25)

Or should it be Life with CML?
I guess that, like most people, I was pretty devastated when diagnosed three years ago, shortly after my retirement at 65 I was fairly active, playing tennis and golf

by Bill Lubbock (Mar 25)

Thanks, Chris. I will check out whether we can be prescribed Dasatanib in Surrey in case the rash returns after this lay-off with prednisone. I hope Brian continues OK. Bill

by Bill Lubbock (Mar 25)

Thanks Anjana. Its a big help to talk to someone who is not jut a doctor going through the procedures wihout eperiencing what the results are. .. Bill

by Bill Lubbock (Mar 23)

Thanks, Sandy,

It is a help to know that people do get over these set backs. Thank you very much for your response. .. Bill
Category: Uncategorised

Replies: 11

Last updated: 25 March 2008
leslie chambers on 17 March 2008

Category: Uncategorised

Replies: 2

Last updated: 24 March 2008

alcohol levels
by leslie chambers (Mar 24)

Hi Sandy,

The reason I asked this question is because a friend has cancer, (not cml,) and he also has fairly low blood counts at the moment. He seems to think he read something about low blood

by sandy craine (Mar 20)

Hi Les,

I had not thought of HGB levels affecting the blood alcohol levels... it is an interesting thought and maybe your doctor could shed some light on it. But I do not think that low HGB

by leslie chambers (Mar 17)

Hi all,

I have been wondering about the effect of alcohol on those of us with low blood levels. I don’t drink a lot, but would the amount of alcohol we drink need to be less, to stay within
Category: Uncategorised

Replies: 2

Last updated: 24 March 2008
clare on 17 March 2008

Category: Uncategorised

Replies: 11

Last updated: 11 April 2008

mood swings and feeling low
by clare (Apr 11)

yes it my husbands email address as i just use his

alistair@jones.1109.freeserve.co.uk

speak soon

by skiinglaketahoe (Mar 28)

Hi, I was so sorry to hear about your poor Mum and all her complications. What a lot for her to cope with. What a difficult decision for you all to think about. I wish you strength in deciding. All

by hoofinruth (Mar 27)

I've been reading these posts with interest. I'd welcome your views on an allied topic that is affecting my mother (and therefore the rest of the family).
My mum is nearly 82 and was dx in 2000.

by Rio (Mar 22)

hey clare
I get many side effects from taking 400mg of glivec each day. I have tablets to handle the side effects, mebeverine for stomach cramps and ondansitron for sickness and i take parecetimol
Category: Uncategorised

Replies: 11

Last updated: 11 April 2008
Steven D on 16 March 2008

Category: Uncategorised

Replies: 1

Last updated: 17 March 2008

Accounts for the Charity Commission
by sandy craine (Mar 17)

The accounts are now with the CC who will put them on their website within the next 2 weeks.

by Steven D (Mar 16)

I have sent emails to the current trustees but have not received a response to when the accounts will be sent to the charities commission.
The last posting regarding this subject alluded to one of
Category: Uncategorised

Replies: 1

Last updated: 17 March 2008
Flora on 16 March 2008

Category: Uncategorised

Replies: 4

Last updated: 18 March 2008

rash
by Flora (Mar 18)

Hi Colin

I was dx on 15 June 2007 - a date I don't think I will ever forget. I hope you are keeping well.
Thank to everyone who added their thoughts. As there is no itch and I have been on

by Colin Woodall (Mar 17)

Hi Flora,
I was dx at the end of May 2007 and after a few weeks on Glivec I developed a rash all over my torso. It didn't itch and disappeared of its own accord within a week or two.

Regards,

by sandy craine (Mar 17)

Hi Flora,

side effects from Glivec can include a rash. usually the rash is itchy and for some can be quite uncomfortable. i had small patches on my legs that were quite itchy but were easily

by julie hubbard (Mar 16)

my son aged 11 has the same he was diagnosed sept 06. It covers the whole of his body but doesn't bother him. He has quite dry skin on his face like sandpaper.I've put both of these down to Imatinib
Category: Uncategorised

Replies: 4

Last updated: 18 March 2008
david barnes on 15 March 2008

Category: Uncategorised

Replies: 1

Last updated: 16 March 2008

disability
by Dennis (Mar 16)

Hi David,

are you wondering whether you should inform your prospective employer about your illness?
If so, maybe this site will help you. Use the link below, then click on "Declaring

by david barnes (Mar 15)

Hi I am applying for a new job and would like to know if CLM is classed as a disability ,
Category: Uncategorised

Replies: 1

Last updated: 16 March 2008
Patricia Ormrod on 15 March 2008

Category: Uncategorised

Replies: 8

Last updated: 22 March 2008

Jack's PCR result.
by Rio (Mar 22)

jack has been very lucky with his result on glivec 8-]
i wish him well, there are not really many kids with CML around so we need to look out for each other
Rio ( 14 yrs )

by sandy craine (Mar 17)

hello Trish,

congratulations on such a good result for Jack. it is truly a wonderful response. i am sure you still have worries about the future... we all do... but especially as this is your

by technician69 (Mar 16)

Hi Trish, great news for you and Jack!!!!! All the best Love Dawn xxx

by kestrel (Mar 16)

Hi Trish,

How fantastic for you all! Doesnt seem long since we met at Edinburgh - but haven't things moved on?! Keep looking forward. Is Jack feeling well on Glivec and able to manage to do
Category: Uncategorised

Replies: 8

Last updated: 22 March 2008
sandy craine on 14 March 2008

Category: Uncategorised

Replies: 1

Last updated: 16 March 2008

NICE has two vacancies for its appraisal committees.
by keith Pratt (Mar 16)

Very Interesting indeed.

Hmmmmmmmm

Keith

by sandy craine (Mar 14)

Some of you may be interested in this. Nice has two vacancies for lay members on its advisory appraisal committees.

Sandy

--------------------------------------------

NICE seeks
Category: Uncategorised

Replies: 1

Last updated: 16 March 2008
kestrel on 12 March 2008

Category: Uncategorised

Replies: 4

Last updated: 23 March 2008

London Marathon
by Rio (Mar 23)

pls sign up for Petes Marathon

The website is: www.justgiving.com/pj-marathon
pls sponsor him before the 13th april to rais money for CLIC sargent if they have helped you over the past years.

by kestrel (Mar 16)

Hi Sandy,

Because of complicated circumstances, I am not able to be specific on the website, but pls feel free to contact me at

kestrel.17-AT-btinternet.com

Thanks and love,

by skiinglaketahoe (Mar 16)

Hi Kestrel
Just to wish you lots of luck with Rio's transplant, I am sure that it was a very hard decision to get to this point and I think once the decision is made it does become a little easier.

by sandy craine (Mar 14)

Hi Kestral,

I am sure this has been such a hard decision for you and Rio to make and I understand the complex emotions surrounding it. I too struggled with the transplant question from the
Category: Uncategorised

Replies: 4

Last updated: 23 March 2008
Bill on 11 March 2008

Category: Uncategorised

Replies: 8

Last updated: 22 March 2008

Pins and Needles & Weakness
by Rio (Mar 22)

hi everyone, i have not been posting for ages..
i sometimes get these wierd fuzzy pins and needle feelings in my arms and i also feel dizzy.. i feel different wen my haemaglobin is slightly low..

by carmeplas (Mar 17)

HI Bill,
David is on gleevec since 9 months. This last month he has started to suffer weakness and dizziness sometimes together with migraine. He has no rush at the moment, but instead other aches

by sandy craine (Mar 12)

hi Bill,

the weakness/dizziness you feel may be because you haemaglobin is low? i remember before diagnosis i used to walk down the street in a sort of wavy line.... very strange sensation as

by skiinglaketahoe (Mar 12)

Hi Bil
I suffered with pins and needles whilst I was on both glivec and dasatanib. It started after around 4/5 months on glivec and gradually crept up from my limbs to all over my body and even on
Category: Uncategorised

Replies: 8

Last updated: 22 March 2008
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