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karen on 8 January 2009

Category: Uncategorised

Replies: 7

Last updated: 16 January 2009

Reactions on Dasatanib
by Flora (Jan 16)

Hello Sandy

This is a brief reply I will try to email you more fully later.

I am being treated at the Beatson West of Scotland Cancer Centre
There is NO medical reason for what happened

by sandy craine (Jan 12)

Dear Flora,

I am so sorry for the loss of your brother and your father in law.

I am sure that both of these awful events being so close contributed to your further health issues,

by Flora (Jan 10)

I have been taking Dasatanib for 7 weeks now and have noticed a red rash on my chest but it does not itch.
I have been under a lot of family stress. My brother passed away on August 18. This was

by Ali Loram (Jan 10)

Hi Karen, although I am not on Dasatinib, I am back on Nilotinib following a spectacular rash! After a 10 day break I restarted at half a dosage & after a week went back up to 800mgs. This time
Category: Uncategorised

Replies: 7

Last updated: 16 January 2009
SwanValleySue on 6 January 2009

Category: Uncategorised

Replies: 3

Last updated: 7 January 2009

Black Mouth (Discolouration of palate) Glivec
by SwanValleySue (Jan 7)

I will forward the information for the person who has been

newly diagnosed so she and medicos can do some further research.
Just goes to show that people's bodies react differently

and a

by sandy craine (Jan 6)

Dear Sue, Anjana (Asian CML Support Group) has kindly given me some links and ideas to the possible causes of the discolouration and mouth ulcers you describe.

See below for her comments.
Hope

by sandy craine (Jan 6)

Hi Sue,

I have never come across this side effect. I will ask other cml advocate colleagues to see if they have heard of this and let you know.

It might be that it is and effect of a

by SwanValleySue (Jan 6)

Sandy and all
In your experience have you heard of this side effect of glivec or that of CML
A person has presented a side effect of glivec or perhaps it is a side effect of CML? as a discolouration
Category: Uncategorised

Replies: 3

Last updated: 7 January 2009
hcy0da on 5 January 2009

Category: Uncategorised

Replies: 4

Last updated: 9 January 2009

Prescription Charges
by skiinglaketahoe (Jan 9)

As I ran round collecting all my prescriptions this morning; I wondered if post-transplant patients will be considered to still be 'cancer patients' and therefore qualify for free prescriptions?

by sandy craine (Jan 7)

Dear Gary,

thanks a lot for providing this very helpful link. for ease of reference I have put the link under the 'essential reading' list at the bottom right hand side of this page.
Sandy

by garym161 (Jan 7)

Hi I have found this and have spoken to the NHS business services dept who have said that we do not have to pay after 1st April 2009. You need to get a exemption certificate signed by your gp in

by skiinglaketahoe (Jan 5)

Hi
I found the following article in the independent, it looks like the government hope to phase this in during 2009 and only for specified cancers. These haven't been designated yet........
http://
Category: Uncategorised

Replies: 4

Last updated: 9 January 2009
patricia dever on 2 January 2009

Category: Uncategorised

Replies: 10

Last updated: 5 January 2011

Nilotinib - what to expect when taking it
by sandy craine (Jan 5)

Hi Zavie.... as often happens these days, old threads are used to insert spam messages. In this case their was a new post that mentioned a steriod preparation used to treat skin rash. I have

by zaviemiller (Jan 5)

Hi Sandy,

Something is amiss with this thread. All the posts seem to be 2 years old.

Zavie

by Pennie (Jan 11)

Changed to Nilotinib in Jan 2008 after nearly 6 years on Glivec. My skin issues on Glivec were pretty bad, rash, dry flaking very thin skin, every tiny knock meant a tear and possible infection.

by Maureen D (Jan 10)

Hi Patricia
I started on Nilotinib six months ago as a first course treatment (having been diagnosed with CML last May). I initially started on 300mg twice a day and had to stop it twice due to
Category: Uncategorised

Replies: 10

Last updated: 5 January 2011
sandy craine on 1 January 2009

Category: Uncategorised

Replies: 3

Last updated: 8 January 2009

Novartis Drug Exposure Pregnancy Registry for Female CML Patients
by SwanValleySue (Jan 8)

Thanks Sandy
Your support of all of us is appreciated
A Hormone Register - now that would be a positive benefit
I would not like another CML person to go thru what I went

thru with a bleed out

by sandy craine (Jan 7)

Dear Sue....

please feel free to use the link to share with anyone you feel would benefit.
The more doctors that use it to register CML patients who have become pregnant whilst taking Glivec

by SwanValleySue (Jan 3)

What a great initiative and the right step forward.
Many young women are now being diagnosed with CML who are asking the question re: having a family and quite a number of women have been successful

by sandy craine (Jan 1)

Novartis Oncology, the manufacturer of Gleevec® & Tasigna® has established this Pregnancy Drug Exposure Registry to learn about pregnancy outcomes and the health of women who have taken Gleevec
Category: Uncategorised

Replies: 3

Last updated: 8 January 2009
Vangogh on 31 December 2008

Category: Uncategorised

Replies: 5

Last updated: 11 January 2009

Side Effects with Glivec
by Oscar0914 (Jan 11)

Hi Tony,

I was on Gleevec for 10 months and I ended up with pseudo tumor cerbri (elevated spinal fluid pressue). This was causing my optic nerves to swell and blurred vision. IF your blurred

by skiinglaketahoe (Jan 1)

Hi Tony

There could be so many reasons for the blurred vision.
If you already wear glasses you could just need a routine adjustment of your prescription, entirely normal and nothing to do with

by Vangogh (Dec 31)

Hi Sandy Hi Kathy

Thanks for your replies, I do have edaema around my eyes so that is possibly the problem. So it looks like down to Vision Express on Friday and get some new goggles. Happy

by sandy craine (Dec 31)

Hi Tony and Kathy,
I think this side effect is due to the edaema (and therefore extra fluid) around the eyes that is a side effect of imatinib for so many. I am not sure that it will pass entirely
Category: Uncategorised

Replies: 5

Last updated: 11 January 2009
sandy craine on 24 December 2008

Category: Uncategorised

Replies: 8

Last updated: 12 January 2009

Best wishes to all
by kestrel (Jan 12)

Thanks Sandy. His BCR-ABL is still coming up positive (0.063% at last test), but now he's off ciclosporin, we are hoping the new marrow will knock it on the head. They've got frozen donor

by sandy craine (Jan 7)

Dear Kestral,

Good to hear that Rio is back at school and is doing well. Having had a transplant myself I can assure you that things do get better over time and the 'bleak times' you

by sandy craine (Jan 7)

Hi Andy

I just want to say congratulations on your lower pcr value and happy new year;o)

Sandy

by Andy Parkin (Jan 6)

Let me add my thanks to all those above. Since being diagnosed in Feb '07 this forum has been so valuable as a source of information and support. There seems to be no area of treatment/issue that
Category: Uncategorised

Replies: 8

Last updated: 12 January 2009
Debbie on 23 December 2008

Category: Uncategorised

Replies: 1

Last updated: 24 December 2008

Merry Christmas
by jaynelister (Dec 24)

Hi Debbie

A very merry christmas to you too.

Love Jayne xx

by Debbie (Dec 23)

HI everyone,

Just wishing everyone a very Merry Christmas and all the best for the New Year. Hope everyone stays safe and well.
MERRY CHRISTMAS and a HAPPY NEW YEAR.

Debbie
Category: Uncategorised

Replies: 1

Last updated: 24 December 2008
Ali Loram on 19 December 2008

Category: Uncategorised

Replies: 5

Last updated: 21 December 2008

Having a break fro Nilotinib.
by Rachel Baughen (Dec 21)

I was so interested to read the posts today about Nilotinib. I started Nilotinib 2 weeks ago (due to Glivec intolerance) and after 4 days developed an impressive rash that got progressively worse.

by Pennie (Dec 20)

Hi Ali
I also had a terrrible rash when I started on Nilotinib, after a 10 day break things were much better. Still some spots particularly in my hair, that itched like ****. My homeopath

by Ali Loram (Dec 19)

Thanks for your mails. I am so worried that the rash will come back when I re start. I dont want to go back on glivec as I have felt so much better since they switched drugs. I didnt have a rash

by sandy craine (Dec 19)

Dear Ali,

I know this must be distressing for you but try not to worry unduly. 7-10 days is not long.. it will probably take this long for nilotinib to get to low levels in your blood/plasma.
Category: Uncategorised

Replies: 5

Last updated: 21 December 2008
MARTIN MOSS on 18 December 2008

Category: Uncategorised

Replies: 2

Last updated: 19 December 2008

POST CODE LOTTERY
by sandy craine (Dec 19)

Dear Martin

I am sorry you have not been able to get a positive funding decision from South Gloucester PCT.

As Pennie has suggested you can take a look at the excellent booklet that

by Pennie (Dec 19)

Hi Martin, Sorry to hear that you are having problems with funding. If you look under news section Sandy posted some information on 1st Aug - title Applying for NHS Exceptional Funding for

by MARTIN MOSS (Dec 18)

Can any one help me with some information,I have had Chonic CML since Dec 2001 and been on imatinib since May 2002, but I have now got resistance to imatinib. I have gone through two E.F Panels and
Category: Uncategorised

Replies: 2

Last updated: 19 December 2008
Basil from RSA on 16 December 2008

Category: Uncategorised

Replies: 2

Last updated: 8 February 2009

Gleevec treatment and Gall bladder removal
by Basil from RSA (Feb 8)

The problems I experienced post my operation lasted a few weeks only. After approx. 4 weeks I felt great again - in fact better than I felt in the preceeding year.

What I thought Gleevec side

by sandy craine (Jan 1)

Dear Basil,

I do hope you have improved and the glivec 'holiday' has solved the post operative side effects and slow healing response.

Please let us know how you are and if the drug

by Basil from RSA (Dec 16)

Hi all,

It has certainly been a long time since I last posted on this forum - but I have been a silent observer, lurking in the shadows of the internet highway.

For the past 5 years I
Category: Uncategorised

Replies: 2

Last updated: 8 February 2009
sandy craine on 12 December 2008

Category: Uncategorised

Replies: 1

Last updated: 12 December 2008

ASH 2008 Education Booklet
by Janet (Dec 12)

Thank you Sandy for this link - very interesting!
Regards, Janet

by sandy craine (Dec 12)

See link to ASH Education Booklet under Seminars and Conference- left hand menu.
Sandy
Category: Uncategorised

Replies: 1

Last updated: 12 December 2008
Michelle H on 11 December 2008

Category: Uncategorised

Replies: 5

Last updated: 16 December 2008

Extra Chromosome 8
by Michelle H (Dec 16)

Hi Sandy, Thank you so much. I had almost convinced myself that it meant something so much worst. We have a follow up appointment on Thursday so hopefully the doctors come to the same conclusion

by sandy craine (Dec 15)

This is a good resource for questions on genetics etc....

Atlas of Genetics and Cytogenetics in Oncology and Haematology
Editor:

Jean-Loup Huret,

Genetics DIM,

University

by sandy craine (Dec 15)

Hi Michele,

I did a little research and came up with the following.

Trysomy 8 has apparently no prognostic significance in CML although it may arise after interferon and/or imatinib

by Michelle H (Dec 15)

Thanks Jayne - I've posted a reply on the children's site.

Does anybody else have any current experience and did it cause them to change treatments?

love Michelle
Category: Uncategorised

Replies: 5

Last updated: 16 December 2008
sandy craine on 11 December 2008

Category: Uncategorised

Replies: 1

Last updated: 12 December 2008

UK CML patient seminar -Summary
by jaynelister (Dec 12)

Hi Sandy,
Thanks for this, I will direct everyone to this from our site too.
Much love
Jayne x

by sandy craine (Dec 11)

Hello all,

I have finally managed to upload the summary of the recent UK CML Patient Seminar which took place in London on November 15th...

Many thanks to Janet Perry for providing me
Category: Uncategorised

Replies: 1

Last updated: 12 December 2008
Ali Loram on 10 December 2008

Category: Uncategorised

Replies: 2

Last updated: 16 December 2008

Nilotinib
by Ali Loram (Dec 16)

Dear all, just wondering if anyone has experianced a rash whilst on nilotinib? I develped this after only being on the drug for 4 days. i have had a sore mouth as well but thats getting better. I

by sandy craine (Dec 11)

Dear Ali,

so glad things have worked out well for you ;o)) nilotinib and dasatinib do not have cross intolerance with imatinib or each other, so you should see a lot of the problems you had

by Ali Loram (Dec 10)

Hi to you all. I am so pleased to say that my local PCT have agreed to fund Nilotinib for me (very bad side effects on Glivec). I was at the clinic yesterday and have collected my first supply, so
Category: Uncategorised

Replies: 2

Last updated: 16 December 2008
kiruba ganesh on 9 December 2008

Category: Uncategorised

Replies: 4

Last updated: 17 December 2008

regarding white hair
by kiruba ganesh (Dec 17)

I am 25 years old,and i had black hair during past 2 years taking Glivec 400mg and 600mg regularly.From last two weeks onwards suddenly my hairs change to white.After taking 800 mg only this will

by John Ford (Dec 14)

My son Edward is 8 1/2 years old and has been on Gleevec since he was 22 months old. He has developed quite a few white hairs over the years which we have always attributed to the Gleevec. So I

by SwanValleySue (Dec 11)

Hi all
My hair has not gone white - pepper and salt - thank god for hair dressers - now is blonde, red, brown, and gold colourings.

Now that is ageing!!
However my hair has thickened

by cmlblogger (Dec 9)

don't want to appear rude, but are you sure that this is not natural ageing?
rob - http://cmlblog.spaces.live.com
Category: Uncategorised

Replies: 4

Last updated: 17 December 2008
Colin Woodall on 7 December 2008

Category: Uncategorised

Replies: 3

Last updated: 9 December 2008

Is this molecular remission?
by tadlaw (Dec 9)

Hi Colin,
I'm not certain what your consultant is referring to here. From what I understand, you have billions of cells. An aspirate looks at a slide of about 200 cells. A PCR looks deeper at many

by Colin Woodall (Dec 8)

Hi Sandy,
thanks very much for your response. Congratulations on your 10 years by the way.
Best regards,
Colin

by sandy craine (Dec 8)

Hi Colin,

mmmm, as your doctor described the results this time in a different way... i.e by using cells good and bad to describe a PCR test (rather than FISH/cytogenetics?)which is usually

by Colin Woodall (Dec 7)

I have recently had my 18 month PCR results. My consultant phoned them to me a few days ago and said that the news is good because they showed, in his words "8000 good cells and no bad ones". This
Category: Uncategorised

Replies: 3

Last updated: 9 December 2008
sue on 4 December 2008

Category: Uncategorised

Replies: 1

Last updated: 7 December 2008

yorkshire region cml support group
by SwanValleySue (Dec 7)

Congratulations
10 years
It gives me confidence - I am only two years from DX

and boy have heaps happened in that time.
I live in a rural area of Australia - and there is absolutely no-one

by sue (Dec 4)

Hi to all congratulations to Sandy on your 10 year anniversary,I am coming to 9 years in January 2009. Several months ago I asked if there was anyone with cml that lived in the Leeds,Bradford,
Category: Uncategorised

Replies: 1

Last updated: 7 December 2008
sandy craine on 4 December 2008

Category: Uncategorised

Replies: 13

Last updated: 15 December 2008

10 years since diagnosis
by zaviemiller (Dec 15)

Dear Sandy,
Best wishes on your 10th anniversary.
Zavie
Zavie Miller (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds

by jaynelister (Dec 12)

Sandy, Just wanted to say 'Happy 10 Year Anniversary'
Things have come such a long way in this time havent they.
I would like to take this opportunity to thank you for all the support you have given

by Gisela (Dec 9)

Dear Sandy,

You are an inspiration to all and your help and support over the years has been extremely valuable and we are very grateful for all the good advice you have given us personally.

by Dennis (Dec 7)

The outlook when we were diagnosed was much bleaker than today - there really wasn't much to look forward to pre-Imatinib days. That first news of STI 571, well what a bolt from the blue that was. I
Category: Uncategorised

Replies: 13

Last updated: 15 December 2008
tadlaw on 3 December 2008

Category: Uncategorised

Replies: 3

Last updated: 15 December 2008

MMR in 6 Months
by zaviemiller (Dec 15)

Y A H O O O !!! Y I P P E E E !!!
Number 1233 in the Zero Club
Zavie
Tracey, please send me your email address - zmiller@sympatico.ca
Zavie Miller (age 70)

67 Shoreham Avenue

Ottawa,

by technician69 (Dec 7)

Hi Tracey, what great news to hear that Ben has had a fantastic response. Its really good to achieve MMR in the first 6 months!!! All the best Dawn xxx

by sandy craine (Dec 4)

Dear Tracey,

what good news! Ben has had a great response and I am sure will see further reductions over the next months

Enjoy your thankgiving ;o))

Sandy

by tadlaw (Dec 3)

Hello,
I'm just so happy to report that my son, Ben, has decreased his CML from PCR 100% in May 2008 to Q-PCR 83.6% in July to Q-PCR 1.6% in September to Q-PCR .065 in November 2008. His aspirate is
Category: Uncategorised

Replies: 3

Last updated: 15 December 2008