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sueparsons on 26 March 2008

Category: Uncategorised

Replies: 15

Last updated: 16 January 2009

change to dasatinib?
by vickiep (Jan 16)

I have read all of the above with great interest. I was started on 400mg of Glivec daily some 18months ago, with the doseage increased to 600mg about 6weeks ago as I am failing to reach satisfactory

by donnaberry (Jun 15)

Tell him a cure is just around the corner......

And hug him tight from me xxxx

Donna x

by sueparsons (Jun 12)

For all of us pcr fans here's a song-

go to: pcrsong.notlong.com

It is an ad for biorad who manufacture pcr equipment.

Sue

by sueparsons (Mar 30)

I'm really grateful for all the comments here and above about the side effects of Glivec and Dasatinib. They are going to be a great help to me in making the decision to change, if only temporarily
Category: Uncategorised

Replies: 15

Last updated: 16 January 2009
fselman on 26 March 2008

Category: Uncategorised

Replies: 1

Last updated: 27 March 2008

News about SGX393 pre-clinical trials
by sandy craine (Mar 27)

Thanks for this link, I have put the full article under the Newswire column.
Sandy

by fselman (Mar 26)

There was a news release on 25 March 2008 about SGX393. You can find it at
http://www.medicalnewstoday.com/articles/101541.php
It seem that pre-clinical trials show that this drug can be effective
Category: Uncategorised

Replies: 1

Last updated: 27 March 2008
keith Pratt on 26 March 2008

Category: Uncategorised

Replies: 1

Last updated: 27 March 2008

PCR today`
by sandy craine (Mar 27)

Hi Keith........ great news once again. Maybe your tiredness is due to the relief of finally finding a drug that your stubborn cml cells respond to? You have kept your nerve for a long time now so

by keith Pratt (Mar 26)

Hello everyone

Hammersmith today, bloods all behaving as best they can, platlets reachinag an all time high (unassisted) of 70, PCR (from 20,02.08) now at 0.763 so must now be 0.000763 last
Category: Uncategorised

Replies: 1

Last updated: 27 March 2008
chris murphy on 23 March 2008

Category: Uncategorised

Replies: 4

Last updated: 27 March 2008

No PCR tests in Ayrshire and Arran - help needed
by Annie Kennedy (Mar 27)

Chris

I think you may have difficulty getting support just because of patient numbers - there may simply not be many people with CML in your healthboard. My consultant is in Edinburgh and

by sandy craine (Mar 27)

Hi Chris....... yes I was surprised that you didn't get any response from others in Scotland, maybe easter holidays has something to do with it?
Do not hesitate to use this forum to support any

by chris murphy (Mar 27)

Hi Sandy

Once again you come to my aid. Thank you very much for all the info. I haven't had any response from other cml patients in this part of the world, perhaps there are very few.

by sandy craine (Mar 26)

Hi Chris,

this article is quite technical but I have cut and pasted the relevant paragraph dealing with PCR/FISH etc. Basically it says that FISH is a very good diagnostic tool but for
Category: Uncategorised

Replies: 4

Last updated: 27 March 2008
chris murphy on 23 March 2008

Category: Uncategorised

Replies: 8

Last updated: 26 March 2008

coughs and colds when taking Glivec/Dasatanib
by fselman (Mar 26)

I have been taking Glivec for almost two months and have also been affected by flu and coughing. The coughing was reduced (but not eliminated) after I stopped taken Alopurinol. I work at high

by cmlblogger (Mar 25)

any slight cold I get I seem to have for no more than 24-48 hrs and then feel fine afterwards
rob
rob - http://cmlblog.spaces.live.com

by Debbie (Mar 25)

I have been on Glivec for nearly 3 years now. Each year I get a flu jab in the beginning of winter and each year I get a cough not long after the jab. I don't know if it is related or not.
Debbie

by cmlblogger (Mar 24)

been on Imatinib for over 12 months, I have not sufferred any serious colds or flus at all in that time, even though my family have been ill at times.
I put it down (unscientifically) to my body
Category: Uncategorised

Replies: 8

Last updated: 26 March 2008
Pennie on 23 March 2008

Category: Uncategorised

Replies: 1

Last updated: 23 March 2008

Tasigna update
by sandy craine (Mar 23)

Hi Pennie,

good to hear that the side effect profile for Tasigna is so much better for you than Glivec.

good luck for Wednesday....and your PCR status. as you say it may be too early to

by Pennie (Mar 23)

I have been on the reduced dose of 400mg since early Feb. So far the side effects for me are very few. Some strange spots on my face that make me look as if I am reverting to teenage! Also got
Category: Uncategorised

Replies: 1

Last updated: 23 March 2008
technician69 on 23 March 2008

Category: Uncategorised

Replies: 1

Last updated: 23 March 2008

Happy Easter Everyone!!!
by Rio (Mar 23)

hope everyone has lots and lots of easter eggs 2day :-)
Rio

by technician69 (Mar 23)

Just a quick message to wish you all a happy easter. Hope you eat loads and loads of easter eggs!!! Love Dawn xxx
Category: Uncategorised

Replies: 1

Last updated: 23 March 2008
Rio on 22 March 2008

Category: Uncategorised

Replies: 11

Last updated: 28 March 2008

My BMT
by Rio (Mar 28)

thanks for supporting me and being really friendly..
il put my website address on here soon. im not really using a lot at the moment but i guess il be using it when i have a BMT.
Rio

by Patricia Ormrod (Mar 23)

Hi Rio,
I have been closely following your CML journey. I spoke to your mum in Edinburgh.
Both Jack and myself will definatly look into your site on a frequent basis.
I have a feeling that you will

by Steven D (Mar 23)

Hi Rio,
Carol and I will be visiting your site regularly.
We both wish you all the best.
It was nice to meet Kestrel in the flesh in Edinburgh.
All our Love
Steven and Carol

by Rio (Mar 23)

thanks everyone for supporting me and il have a look at peoples website soon. thanks for letting me have your email address martin, if im worried about something to do with the BMT il probably give
Category: Uncategorised

Replies: 11

Last updated: 28 March 2008
hcy0da on 20 March 2008

Category: Uncategorised

Replies: 5

Last updated: 25 March 2008

Thoroughly Cheesed Off
by Steven D (Mar 25)

Hi Helen,
You should be able to communicate with the person responsible for your well being.
My advice would be to ask for an immediate referral to somewhere like the Hammersmith which is a center

by skiinglaketahoe (Mar 25)

Helen
I was sorry to hear of your problems at your local hospital. I would think that everyone here would empathise with you. There is nothing worse than the building up of anticipation and tension

by Des (Mar 25)

Des
I live in Wales and was diagnosed in April 2003. After almost a year I requested a referral to Hammersmith as I felt(after reading on this site) that they were far more familiar with CML than

by valandi (Mar 22)

Interesting comments and I doubt you are alone- Val is seen by any one of several doctor's in the haemotology dept of the local hospital (at least 6 different doctors in the last 12 months).
Category: Uncategorised

Replies: 5

Last updated: 25 March 2008
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