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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
Ali Loram on 29 April 2009

Category: Uncategorised

Replies: 3

Last updated: 30 April 2009

sore eyes
by sandy craine (Apr 30)

Hi Ali,
Yes, Hypericum is the botanical name for St John's Wort and should not be taken internally with imatinib as it has the effect of decreasing the bioavailability of the drug.
imatinib/Glivec:

by Ali Loram (Apr 30)

Sandy, thanks for your mail. Just a quick question... isnt hypericum another name for St Johns wort? Anyhow, I have just placed an order so hope it helps. Eye hopsital today says that its due to the

by sandy craine (Apr 29)

Hi Ali,

you could try and eyebath with a Homeopathic preparation called HyperCal Mother Tincture. Mix of hypericum and calendula flowers so nothing chemical.

2-3 drops in warm water has

by Ali Loram (Apr 29)

Hi to all, just wondering if anyone has experienced very sore, red, itchy eyes. I am currently on Nilotonib & taking steroids to counteract red itchy flushed skin. I've had painfull eyes for 2
Category: Uncategorised

Replies: 3

Last updated: 30 April 2009
Des on 21 April 2009

Category: Uncategorised

Replies: 12

Last updated: 6 July 2010

1 month and counting
by yogiB (Jul 6)

I was just wondering how you are doing one year on from deciding to come off medication? Can you update us please?

Beth

by Basil from RSA (May 5)

Thanks Sandy,

I will be discussing going forward when next I see my Haematologist in a couple of weeks time.

But the difference in state of mind and physical is already fantastic, but

by sandy craine (May 5)

Dear Basil....... hope all is resolved with your break from imatinib. As you have been pcru for 3 years maybe, if this break pans out ok, you would consider a break for longer trial period given

by Basil from RSA (May 3)

Hi Des,

I have been on Gleevec for 5+ years now and have been Ph "undetected" for at least 3 years. The test in South Africa was only developed 3 years ago and my first result came back as "
Category: Uncategorised

Replies: 12

Last updated: 6 July 2010
Jeanette Douglas on 10 April 2009

Category: Uncategorised

Replies: 29

Last updated: 2 July 2013

Introducing Myself to the Forum
by Christine Wilson (Jul 2)

Hello Olivia, thank you for our post. I never saw this one coming at all and it has caught my husband and I off guard completely. I have been saying for ages that 'I didn't feel well' but apart from

by karen (Jul 2)

Paracetemol is fine to take but it is important not to use it long term or to take more than the recommended dose as it can have issues. All the drugs we take are processed by the liver so you have

by Olivia (Jul 2)

Hello Christine
I'm another 60+, have had CML for nearly 4 years now. It does take time to get over the shock of the diagnosis - and there is a small part of me that still doesn't fully believe it

by Christine Wilson (Jul 2)

Thanks David, that information is so useful. As I haven't taken the pill yet this morning. (I was waiting to hear from my spec nurse), I will take yesterday as day one and take today's pill this
Category: Uncategorised

Replies: 29

Last updated: 2 July 2013
Jim Simpson on 9 April 2009

Category: Uncategorised

Replies: 5

Last updated: 15 April 2009

Bosutinib
by zaviemiller (Apr 15)

Hi Jim,
Sorry to hear about your recent PCR result. Glad to hear that they are redoing the PCR test. A 2 log increase is pretty dramatic and needs to be acted on quickly. If the result is not a blip

by Jim Simpson (Apr 13)

Hi Sandy

You may be right regarding the one off blip and I think that is why the nurse is having me come in earlier to have an other PCR test done and have the results in time for my doctors

by Jim Simpson (Apr 13)

Hi Tracy

The answer to your question is – I don’t know – but it is possible that they are not available or maybe this new one suits my profile. It’s all to early to say but I will certainly

by sandy craine (Apr 10)

Hi Jim,

hopefully your PCR will be a one of 'blip' and you will not need to change drugs. Usually 3 consecutive PCR's are required to confirm the 'trend' of your results rather than a one off
Category: Uncategorised

Replies: 5

Last updated: 15 April 2009
sue on 8 April 2009

Category: Uncategorised

Replies: 4

Last updated: 2 May 2009

feeling cold and night sweats and gleevic
by clare (May 2)

hi

havent spoke for a while but ive been getting this for years ,wakeing up soaking with sweat and then really cold all the time!!

i also suffer from hot flushes (alot recently )and

by kathy (Apr 9)

Hi sue,ive been on glivec since 0ct 03 and im just the same.Im always cold to the bone.xx

by SwanValleySue (Apr 9)

Sue
I am also PCRU
I also have night sweats - and during the day (just hot)
and suprising I also have if not a sore throat but a scratchy throat
Always cold to the bone (now that is a glivec issue

by patricia dever (Apr 8)

Sue, I've been on Glivec almost 6 years and the same thing happens to me, Im cold during the day, night sweats and sometimes wake up during the night with a sore throat. I just put it down to
Category: Uncategorised

Replies: 4

Last updated: 2 May 2009
Pennie on 2 April 2009

Category: Uncategorised

Replies: 1

Last updated: 4 April 2009

Thyroid nodules anyone?
by sandy craine (Apr 4)

Hi Pennie,

usually nodules indicate an underactive thyroid glad... hypothyroidism. Both my mother and sister-in-law have underactive thryroid and have had nodules (both had them removed)..

by Pennie (Apr 2)

Well it seems to be my time for problems ! Have been having severe back pain so had a CT scan, then a ultra sound and 3 nodules were found on my thyroid gland. Am on the list for an urgent needle
Category: Uncategorised

Replies: 1

Last updated: 4 April 2009
Paul Cooke on 29 March 2009

Category: Uncategorised

Replies: 10

Last updated: 27 April 2009

Length of time since diagnosis
by johnh (Apr 27)

I have now had my regular chat with the consultant but, unfortunately, he couldn't tell me what my PCR result was. It has now been four weeks since my blood test and still no result. However, the

by Des (Apr 21)

Just come back from HH from the first of many monthly monitorings. My wbc, platelets hbg etc had not changed from a month ago when I stopped the Glivec initially. I was surprised that the wbc

by sandy craine (Apr 18)

Hi Kenny,

I just wanted to say congratulations on the improvement in your pcr results after the increase in dose. Its good to hear positive stories from positive people like you. I am sure it

by Kenny (Apr 13)

Hi Paul,

I was diagnosed in 2003 and have been on Glivec since January 2004 and have achieved 0.012 % PCR. Within 18 months I had shown significant improvements in molecular response
Category: Uncategorised

Replies: 10

Last updated: 27 April 2009
Pennie on 27 March 2009

Category: Uncategorised

Replies: 10

Last updated: 2 May 2009

Funding agreed
by Ali Loram (May 2)

Hi Pennie, what a small world, I live about 1/2 away from paignton. I have a house there which is let out, its on the cliff (where the steam train runs) overlooking Broadsands beach! It would be

by Pennie (May 1)

Sorry Ali - there is an Ali up here in London near me I have been trying to get in contact with !!! Where abouts in Devon are you based? My family lived in Paignton, and I know that area really well

by Ali Loram (May 1)

Pennie

hope it will be ok, let us know your results.
Coffe sounds great but a bit of a way to travel..I'm in Devon, perhaps you thought I was someone else!!
What side effects have you

by Pennie (Apr 30)

Hi Ali
Had a biopsy this week, now I have to wait until May 13th to see thyroid specialist
Hope you are well.

Perhaps we could manage that coffee soon?
ATB

Pennie.pennie
Category: Uncategorised

Replies: 10

Last updated: 2 May 2009
tadlaw on 25 March 2009

Category: Uncategorised

Replies: 3

Last updated: 27 March 2009

Combined Therapy as Tx for CML - Anything new??
by michael (Mar 27)

I asked my consultant about a Dasatinib/Nilotinib/other cocktail but the drug costs put it out of reach(NICE would have a fit)

by tadlaw (Mar 27)

Thanks so much. It would be wonderful if a combined therapy or a cocktail would work one day to eradicate CML entirely. My 11 y/o (with CML) has decided to become a scientist, so maybe one day he'

by kazza62blue (Mar 26)

This sounds like Tessa Holyoake in Glasgow's "GIMI" trial who was trying to bring CML cells out of quiescence. 3 arm study with a)continuous Glivec, b)glivec "holiday" 1 week out of 4, c)same as b

by tadlaw (Mar 25)

Hi,

In 2008, some reports came out addressing "quiescent CML stem cells" that are "impervious to BCR/ABL inhibitor therapy".
Those studies seemed to recommend that a combined therapy, a
Category: Uncategorised

Replies: 3

Last updated: 27 March 2009
vicki h on 25 March 2009

Category: Uncategorised

Replies: 3

Last updated: 30 March 2009

Paracetamol and periods
by technician69 (Mar 30)

Hi Vicky, Becky may daughter (16) had very heavy periods after starting on Glivec. Her consultant put her on Northisterone, these stop her periods fully. She does have very bad cramps in her

by SwanValleySue (Mar 25)

Vicki
600mg glivec dose
My suggestion is to get yourself a really good gynno who will

share care your health with your CML specialist.
I and many women have your experience of erratic and very

by sue (Mar 25)

susan dickerson Hi Vicki, Sorry you are having these problems and at least your consultant says this is a side effect of gleevic/cml where as my consultant dismissed this. I have had cml for 9

by vicki h (Mar 25)

One for the ladies maybe - I've been expeincing far more erratic and painful periods over the past few years. I've been on Glivec for 7 years now. I take lots of poaracetamol and never thought about
Category: Uncategorised

Replies: 3

Last updated: 30 March 2009