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sandy craine on 5 June 2009

Category: Uncategorised

Replies: 1

Last updated: 6 June 2009

Over The Wall - activity camps for children affected by chronic/serious diseases
by Parmjit (Jun 6)

My son Max thoroughly enjoyed the experience that the summer camps provide. He was fortunate to get a place on a camp just a year out from his transplant, and we saw a significant change in him on

by sandy craine (Jun 5)

Some of you might be interested in this...
Over The Wall run residential activity camps for children and siblings from 8yrs to 17 yrs old who are affected by a serious or chronic illness. Over The
Category: Uncategorised

Replies: 1

Last updated: 6 June 2009
Ali Loram on 2 June 2009

Category: Uncategorised

Replies: 3

Last updated: 16 June 2009

worried about biopsy
by Barbs (Jun 16)

How did the biopsy go?

by kathy (Jun 2)

Hi there,i found it much better from there to,it wasnt as painful and took half the time,dont worry.xxxx

by L0U (Jun 2)

Hi Ali

I have had this done before & I actually found it less painful,when I was having it done I felt a 'butterfly' sensation in my tummy other than that the usual pushing/pulling...There

by Ali Loram (Jun 2)

Tomorrow I am having another bone marrow biopsy, thats ok, but tomorrow it's going to be taken from my sternum becouse the last 2 via my pelvic ridge didnt produce conclusive results. The consultant
Category: Uncategorised

Replies: 3

Last updated: 16 June 2009
Pennie on 1 June 2009

Category: Uncategorised

Replies: 1

Last updated: 1 June 2009

Latest PCR
by sandy craine (Jun 1)

Dear Pennie,
I am really glad to hear that you are feeling better and your blood sugar and cholesterol levels responding to your diet.
I cannot remember your previous PCR results but I assume this

by Pennie (Jun 1)

Just got latest results - PCR now 0.206. This is on 400mg Tasigna for 18montyhs. Still not getting to that elusive zero!
Thyroid nodules due for biopsy in 2 weeks, cholestrol down to manageable
Category: Uncategorised

Replies: 1

Last updated: 1 June 2009
Steven D on 31 May 2009

Category: Uncategorised

Replies: 1

Last updated: 1 June 2009

CML Seminar
by sandy craine (Jun 1)

Hello Steven,

I do not usually hear about this until later in the year as the seminar is normally held in either October or November.

As soon as I have news of a possible date then of

by Steven D (May 31)

Hi.

Does anybody know when he CML seminar will be in the UK.

Thanks

Glad to hear from anyone soon

Steven
Category: Uncategorised

Replies: 1

Last updated: 1 June 2009
technician69 on 31 May 2009

Category: Uncategorised

Replies: 7

Last updated: 7 June 2009

Taking Glivec on Holiday..
by technician69 (Jun 7)

Thank you Martha. xxx

by Martha Stuart-Berrisford (Jun 6)

Hi Dawn, I have always travelled while on Glivec. I just made sure that I had all my tablets in my hand luggage as I think when I checked with my insurance company they did not cover you if you lost

by technician69 (Jun 3)

Thank you for the advice regarding tablets, we will split some between our cases just in case. Dawn xxx

by mariansy (Jun 3)

Nice to know I'm not alone in this one - I too take twice the amount I need one set in my handbag and another in a carry on case. I never ever check them in.
Also I've not had any problems with
Category: Uncategorised

Replies: 7

Last updated: 7 June 2009
moyabird on 27 May 2009

Category: Uncategorised

Replies: 5

Last updated: 22 June 2009

Needing Info on Desatinib
by zaviemiller (Jun 22)

Y A H O O O !!! Y I P P E E E !!!
Number 1262 in the Zero Club
Zavie
Moya,
Please send me your email address.
e-mail: zmiller@sympatico.ca

by moyabird (May 30)

Hi Karen,

Thanks for that good news re side effects.

Have to say that so far (only a few days mind you!) finding dasatinib easier on the system. The pharmacist didn't know about coffee

by karen (May 28)

Hi Moya
Not sure about how you should take the tablets but I have been on these for a few months and the side effects are better than Glivec (ie there are less of them!). I was not told to avoid

by moyabird (May 27)

Hi Zavie thankyou for your reply. I have been in cytogenic remission for years but not achieved a good enough molecular remission despite being on the 800mgs. At present it is between 2 to 3 log
Category: Uncategorised

Replies: 5

Last updated: 22 June 2009
Steven Allan on 20 May 2009

Category: Uncategorised

Replies: 3

Last updated: 21 May 2009

Emm... hello :)
by sandy craine (May 21)

Hi Steven,

thanks for sharing the great news that you have a complete molecular response.... good to hear from you ;o)
Wishing you many more negative PCR's

Sandy

by Don Adkins (May 20)

Congrats Steven!!!!

by Ali Loram (May 20)

Hi Steven, what great news with your PCR. "Pretty happy" is an understatement! Well done! Its great that you have managed to work full time

Wishing you all the best.

Ali.

by Steven Allan (May 20)

Hi Everyone.
I haven't posted on here for ages... I guess I have been trying to lead a 'regular' life. I hope that makes sense?
Anyhow, I just thought I'd post that I finally got a PCR of 0.00 last
Category: Uncategorised

Replies: 3

Last updated: 21 May 2009
Don Adkins on 19 May 2009

Category: Uncategorised

Replies: 3

Last updated: 23 June 2009

Spinal Meningitis
by jem777 (Jun 23)

Such a scary and terrible experience. You should need some counseling and a little help from your friends in order to cope up with this. Best wishes to and my prayers are in you.

new york

by sandy craine (May 21)

Dear Don,

I read about your horrific experience on Anjana's forum and to say the least I was shocked, but then I realised that since you were writing in the past tense that you had come

by Barbs (May 19)

Dear Don,

am sorry to hear about this "minor" setback.

Glad to hear that you're on the mend - as usual you showed yourself to be a real fighter,

take care

Barbara

by Don Adkins (May 19)

Since this is such a long post, and I apologize for that, I'm cutting and pasting from a couple of other sites that I participate in - basically because I'm too lazy to re-type it every time.
Hi
Category: Uncategorised

Replies: 3

Last updated: 23 June 2009
Comkick1 on 16 May 2009

Category: Uncategorised

Replies: 1

Last updated: 16 May 2009

Hi All
by sandy craine (May 16)

Hi Mark...... welcome to this forum and congratulations on your very good response to imatinib. I am sure your pcr's will continue to fall and yes you are right that your response is probably due to

by Comkick1 (May 16)

Hi all, I am not new to CML but have not posted on this forum. I was diagnosed in October 2008 and was diagnosed with a WBC of 50000 no enlarged spleen, and this was all down to a breathless episode
Category: Uncategorised

Replies: 1

Last updated: 16 May 2009
lynnsch on 14 May 2009

Category: Uncategorised

Replies: 3

Last updated: 16 May 2009

An introduction and a thank you
by sandy craine (May 16)

Hi Lynn and welcome to this forum. I hope you continue to find it supportive and informative as time goes on. You are fortunate to be treated at Glagow as Tessa Holyoake who heads the team is a

by lynnsch (May 15)

I have emailed you separately but thanks for your comments.
I am very glad to hear that your husband is doing well; although you're told that Glivec has amazing results its actually good to hear

by Carol (May 14)

Hi Lynn,

Welcome to the group to that no one wants to belong to!.

So glad you have found us there is a wealth of information to be gained from this group together with help support

by lynnsch (May 14)

Hi everyone,
My name is Lynn, I am 38yrs old and although I live in London I work in Glasgow during the week. I was diagnosed with CML last month and have been taking Glivec for 30 days. I consider
Category: Uncategorised

Replies: 3

Last updated: 16 May 2009
sue on 12 May 2009

Category: Uncategorised

Replies: 2

Last updated: 13 May 2009

yorkshire region cml support group
by chrissbb (May 13)

Hi, this is really good news, i,m from Southowram,Halifax and a CML patient, DX in December 08, I had my first visit to the Leeds institute of Oncology a couple of weeks ago. Dr Graeme Smith is my

by sandy craine (May 13)

Dear Sue, this is really good news. I am so glad this is finally happening and I am sure it will be a big success. If I am free on the 6th July I hope to join you, if that's OK with you, I will let

by sue (May 12)

Hi to everyone, just a memo to let everyone know that the first yorkshire region cml support group is finally going to take place on Monday 6th July 2009 at ST James Hospital Leeds 7pm until 9pm. Dr
Category: Uncategorised

Replies: 2

Last updated: 13 May 2009
Vangogh on 11 May 2009

Category: Uncategorised

Replies: 2

Last updated: 15 May 2009

BCR/ABL Results
by michael (May 15)

you can get differences in results between blood and marrow tests,you get more mature cells in your Blood,also if you take two samples and send them to two labs for testing the results can be

by Vangogh (May 15)

Hi

As nobody has replied to my post I can only assume that like me nobody knows if there is a difference in the blood tests and bone marrow tests

by Vangogh (May 11)

Hi Everybody

I was diagnosed CML June 2008 and have been on Glivec since July 2008. My question is, are the BCR/ABL results different with regard to blood tests and bone marrow tests? My
Category: Uncategorised

Replies: 2

Last updated: 15 May 2009
michael on 10 May 2009

Category: Uncategorised

Replies: 13

Last updated: 14 May 2009

Platelets
by julie hubbard (May 14)

Hi just to let you know my son takes melatonin to help with his sleep. It can only be prescribed by the hospital consultant our GP is not allowed to prescribe it

by hcy0da (May 13)

Hey Michael
Low platelets has been a constant problem for me so much so that I am now having a transplant as I can't stay on the drugs long enough for them to have any affect. I have found the docs

by skiinglaketahoe (May 13)

Hi Diana
When I was on glivec I had a multitude of side effects, not all of which developed at the same time. I had some appear pretty quickly and some took longer and some took even longer....
I

by michael (May 13)

Nice to read your posts regarding how your are all getting on with Glivec,prehaps a new thread might be started?,as this one is regarding Platelets,back on topic please,

Michael
Category: Uncategorised

Replies: 13

Last updated: 14 May 2009
ulli on 7 May 2009

Category: Uncategorised

Replies: 4

Last updated: 10 May 2009

New Horizons 2009 in Lissabon, will some of you be there?
by sandy craine (May 10)

Dear Ulli,

have you tried the childhood CML discussion forum on Jerry Mayfield's US site?

Your can fine the link to his site on our 'Links' page.... or click on the following:
...www.

by ulli (May 8)

Hi,
thanks for your answers, Jayne contacted me when I had difficulties to join her forum.
Do you know any other patient groups that deal with children-CML? I know its a very rare deasese for

by sandy craine (May 8)

Dear Ulli,

Welcome to this forum. The New Horizons in CML and GIST conference is for patient group organisers. Jayne, who runs the Children with CML group (see the link under their logo on the

by cmlblogger (May 7)

Hi Ulli - your english is better than my german :)
try http://www.childrenwithcml.org.uk/home.asp?parent_id=1 for a site for CML and children
rob - http://cmlblog.spaces.live.com
Category: Uncategorised

Replies: 4

Last updated: 10 May 2009
sandy craine on 7 May 2009

Category: Uncategorised

Replies: 2

Last updated: 23 June 2009

Druker and Zimmerman: European Inventor(s) of the Year 2009
by jem777 (Jun 23)

You guys are doing absolutely great. I really like your attitude about maintaining your health.

new york surgical oncologist

by tadlaw (Jun 11)

My son Ben treats with Dr. Druker and before we settled on a regular oncologist, Dr. Zimmerman reviewed much of Ben's blood work - gratis. These two men are exceptional people.
Tracey

by sandy craine (May 7)

European Inventor of the Year 2009 in the category "Industry"
Chronic myelogenous leukaemia (CML) was long-considered one of the deadliest forms of cancer, capable of striking at any time, causing
Category: Uncategorised

Replies: 2

Last updated: 23 June 2009
Stuart Johnston on 4 May 2009

Category: Uncategorised

Replies: 6

Last updated: 21 May 2009

Introducing Stuart 39yo
by sandy craine (May 21)

Dear Peter... so good to hear from you and that all is well. I agree that Prof. Clark is a really great CML doctor and is pretty much at the cutting edge. He is very supportive of patients and

by Peter Miles (May 17)

Hi Stuart

Welcome to the club - there are loads of us so please don't feel alone - many of us are doing very well too and for those that aren't there is lot of hope so please try to stay very

by sandy craine (May 10)

Dear Stuart... I am a northerner too and brought up in Liverpool so not far from Wigan - although I have lived in London for over 25 years my parents and wider family still live in the north west ;o

by Stuart Johnston (May 8)

Hi Sandy

thanks for the response.

I am being treated for CML at wigan hospital Hemaotology unit (Parsons walk Wigan)

If all goes well i should be starting glivec next friday.
Category: Uncategorised

Replies: 6

Last updated: 21 May 2009
chrissbb on 3 May 2009

Category: Uncategorised

Replies: 5

Last updated: 30 May 2009

Gaviscon
by fehr (May 30)

Sandy,

As far as I am aware, Gaviscon is not an antacid, but forms a layer on top of the stomach contents to prevent reflux.
See the Gaviscon website http://www.gaviscon.co.uk/

by sandy craine (May 5)

Hi Chris,

I use Bach Rescue Remedy as a first aid for general anxiety and worry. If I am really scared of something and feel really anxious (like before getting on a plane or before a bmb/a) I

by Ali Loram (May 5)

Hi Chris, when I was on Glivec the hospital prescribed Lanzoprosol for reflux/heartburn. It worked well for me plus I could take it up to 4 times daily. Now Im on Nilotinib I cant take it, but dont

by chrissbb (May 5)

Thanks for that Sandy,

I will get some aloe vera this afternoon, i dont suppose you know of anything natural for anxiety too do you ? id be very gratefull if you did. Cheers Sandy.
Category: Uncategorised

Replies: 5

Last updated: 30 May 2009
Barbs on 3 May 2009

Category: Uncategorised

Replies: 2

Last updated: 19 May 2009

David Cox
by Barbs (May 19)

Hi sandy,

Dr N is helping organise a national CML day here in France for November 14th - there will be simultaneous meetings in several big cities. He's asked if I'd be interested in taking

by sandy craine (May 5)

I am really sorry to hear that David is suffering with such serious complications caused by GVHD. I will send a message of support to him... thanks for letting us know here.
I hope you are well. Did

by Barbs (May 3)

Check out David's blog on the homepage - he really needs our support right now.

I met him at the Manchester CML meeting & thought he was a really nice person.

As a marine, I thought
Category: Uncategorised

Replies: 2

Last updated: 19 May 2009
Brenda M on 3 May 2009

Category: Uncategorised

Replies: 3

Last updated: 5 May 2009

https://cmlmedicalmonitor.com//home_cmlmedicalmonitor.asp
by sandy craine (May 5)

Dear Brenda, welcome to this forum. I hope you find support and information you need.
Thanks also to Sue for sending the link to the new CML tracker site compiled by the US Leukaemia and Lymphona

by Brenda M (May 4)

Dear Sue,
Thank you for that information. I have already registered on the site but have not yet had a chance to browse the site. I don’t think that it is the same site and I will have to re-capture

by SwanValleySue (May 4)

Please refer to the site and register which is the new BMS site for cmltracker.com
https://www.cmltrackerlls.org/
Brenda - Is this the site that you were referring - if it is the site has changed

by Brenda M (May 3)

Thank you for allowing me to join your group; I was diagnosed with CML in October last year (2008). I immediately got onto the internet and came across the following site: https://cmlmedicalmonitor.
Category: Uncategorised

Replies: 3

Last updated: 5 May 2009
Alastair C on 29 April 2009

Category: Uncategorised

Replies: 2

Last updated: 30 April 2009

New (old) CML Story
by sandy craine (Apr 30)

Hello Alistair, I am glad we were able to sort out the problems with your account so that you can now post to the forum... and with such good news.

Congratulations on your response to imatinib

by zaviemiller (Apr 30)

YAHOOO!!! YIPPEEE!!!
Number 1256 in the Zero Club
Zavie
Alastair, could you send me your email address? I have some questions for you.
Zavie Miller (age 70)

Ottawa, Canada

dxd AUG/99

by Alastair C (Apr 29)

I've been reading posts on this site for a good while, but haven't posted as there was a problem with my account set-up, which has now been sorted (Thanks Sandy)
Here's a brief account of my story:
Category: Uncategorised

Replies: 2

Last updated: 30 April 2009