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SwanValleySue on 20 January 2009

Category: Uncategorised

Replies: 7

Last updated: 12 February 2009

Eye Bleeds
by leslie chambers (Feb 12)

Hi sue, I am not quite sure what PCRU means, but I take it it means undetectable, well it was quite a while, but a DR told me it does'nt mean it is'nt there. its just undetectable, and it will

by SwanValleySue (Feb 10)

Good Morning Les
Thanks for your response on eye bleeds
I was amazed that you do not take any medication for CML and your PCR tests still come back that you are PCRU
How long were you PCRU before

by leslie chambers (Feb 5)

Hello Zavie, I am not on any meds for CML at all, my PCR remains undetectable.

Kind regards, Les.

by zaviemiller (Feb 5)

Hi Les,
What medication have you been taking since stopping Gleevec and what is your CML status?
Zavie
Zavie Miller (age 70)

Ottawa, Canada

dxd AUG/99

Gleevec since MAR/27/01 (400
Category: Uncategorised

Replies: 7

Last updated: 12 February 2009
Bram on 18 January 2009

Category: Uncategorised

Replies: 6

Last updated: 19 January 2009

Liver function test.
by karen (Jan 19)

I have a test every time but that has only been since I had the start of liver failure after a reaction to Glivec. I ended up in hospital (the same colour as Bart Simpson!) and now they check

by sandy craine (Jan 19)

Hi Bram,
It would be best to take a look at the FAQ/Glossary on the main menu.

Go to 'Normal Blood Counts' and scroll down to the Liver Function Tests..... I have copied some info here but

by valandi (Jan 19)

For the first 12 months following dx, as far as we can tell, LFTs were not routinely done by the hospital where Val is being treated.
In Mar last year, one was done for an unrelated illness and the

by mariansy (Jan 19)

I have an LFT every time I have my bloods done. My dr doesn't give me the results though. He says if they are off then he'll tell me.
Marian
Category: Uncategorised

Replies: 6

Last updated: 19 January 2009
sweet 24 on 18 January 2009

Category: Uncategorised

Replies: 5

Last updated: 2 March 2009

menopause
by sweet 24 (Mar 2)

I have only just read your comment. Mum is getting counciling and has started medacation. how are you doing? It's great to know that there are people to help, i told her about the site and she is

by moyabird (Jan 19)

Hi

I was moved by your mom's story to finally figure out how to post even though I have been a member for a few years and diagnosed over 4 years ago (when I was 41).
Yes I think both the CML

by sweet 24 (Jan 19)

thankyou for this i will certainly tell my mum about that website. My mum is 42. Thankyou so much for you help.
Sweet 24

by sandy craine (Jan 19)

The age at the onset of menopause really does depend on the individual. Some women experience menopause much earlier than others. You do not say how old your mum is but her symptoms might be
Category: Uncategorised

Replies: 5

Last updated: 2 March 2009
sparkypcl on 17 January 2009

Category: Uncategorised

Replies: 5

Last updated: 6 March 2009

Echinacea
by sparkypcl (Mar 6)

Hi folks, thanks for your replys, I've tried to keep away from any colds etc and use some anticeptic gel now when I am at work handing money justin case that is where I am pickibg up the infections

by Barbs (Feb 3)

Here is an article from the Journal of Clinical Oncology and the National Cancer

Institute on the combination of taking herbs and cancer drugs.

www.healthmonitor.com (winter 2008 edition

by carmeplas (Jan 21)

Hi,
We were told to not use echinacea or similars, because they increase the levels of white cells in the body, which is just the opposite that you want right now.
Carmen

by Barbs (Jan 21)

I've always been told to avoid Echinacea by my Dr, there were worries that it could affect the liver & the concentration of Glivec in the blood.

I had a look on internet & came up with
Category: Uncategorised

Replies: 5

Last updated: 6 March 2009
vickiep on 16 January 2009

Category: Uncategorised

Replies: 6

Last updated: 5 February 2009

Philadelphia chromosone
by vickiep (Feb 5)

Hi..thank you everyone! I recently had a nasty tummy bug and after three days of being in bed with only water passing through both ends(!) and not being able to take my Glivec...I felt GREAT!! So I

by Ali Loram (Jan 22)

Hi Vicki, I am so sorry that you are feeling so down and not tolerating Glivec, I was very much the same as you whilst on it as well. I am now on Nilotinib. I would agree with Sandy, you need to

by sandy craine (Jan 18)

Dear Vicky....... I am sorry to read that you are suffering so much from side effects of the increase in dose. It seems to me that the effects are really far too much for you to tolerate for much

by sandy craine (Jan 18)

Your post from the previous thread.

Dasatanib
Submitted by vickiep on Fri, 2009-01-16 18:24.
I have read all of the above with great interest. I was started on 400mg of Glivec daily some
Category: Uncategorised

Replies: 6

Last updated: 5 February 2009
Barbs on 15 January 2009

Category: Uncategorised

Replies: 4

Last updated: 16 January 2009

Can anyone help a young french CML athlete?
by sandy craine (Jan 16)

Dear Barbara,

Here are the details of Michel Anthoine's group which has its base in Nice:
Name of Organisation:

Leucémie espoir 06
Website:

leucemie-over-blog
Contact Telephone

by Barbs (Jan 16)

Hi Sandy,

thanks for replying - this is the first time that I've heard of the French group - could you let me have their address please?

Dr Nicolini is planning to organise a CML

by cmlblogger (Jan 16)

you might want to try Chris Todd at Torquay Unitd, who has just been dx'd http://news.bbc.co.uk/sport2/hi/football/teams/t/torquay_united/7830596.stm although not sure how you would get in touch
or

by sandy craine (Jan 15)

Hello Barbara,

I know there is a French CML support group run by a patient based in the South. I will contact him and ask if he knows of someone Maelan can talk to.

Meanwhile I hope
Category: Uncategorised

Replies: 4

Last updated: 16 January 2009
Michael.. on 15 January 2009

Category: Uncategorised

Replies: 1

Last updated: 15 January 2009

Caring bridge Blog
by sandy craine (Jan 15)

Hi Michael..... good luck for your upcoming transplant. I will be following your progress via your diary.

Sandy ;o)

by Michael.. (Jan 15)

As some may have noticed, I started a blog on Caring Bridge a week or so ago, thanks to Sandy who has been a great help to me on many fronts, including adding the link on the Home page.
I’ve found
Category: Uncategorised

Replies: 1

Last updated: 15 January 2009
Vangogh on 14 January 2009

Category: Uncategorised

Replies: 1

Last updated: 15 January 2009

BCR/ABL Test Update
by sandy craine (Jan 15)

Dear Tony........ many congratulations on your reduced levels which is quite a significant drop over just a few (4?) months

best wishes

Sandy

by Vangogh (Jan 14)

Hi

Really pleased today as I have just had my last BCR/ABL test results e-mailed to me. I have been on Glivec since July 2008.

Diagnosed in June 2008, and my test results in October 2008
Category: Uncategorised

Replies: 1

Last updated: 15 January 2009
Colin Woodall on 13 January 2009

Category: Uncategorised

Replies: 3

Last updated: 16 January 2009

Molecular remission (now posted in the right place)
by Colin Woodall (Jan 16)

Hi Sandy,
thankyou very much for your detailed reply. I am trying not to get too carried away over a single result, as you say it is the trend which matters most. I had already read the STIM study

by sandy craine (Jan 15)

Hi Colin...... many congratulations, you have a right to feel smug! CMR is a great place to be....especially after you were stuck at 0.3% for a while.

As you know we are always told to look at

by SwanValleySue (Jan 13)

Congratulations Colin
Crack the bubbly - you have a right to feel elated.
Sandy or others will be able to give you more technical

information about relapses but the basic is just

Keep

by Colin Woodall (Jan 13)

Hi all,
I have just had it confirmed today during my routine 3 monthly appointment with my consultant that my latest test results of 0.0000% mean I have achieved molecular remission after having "
Category: Uncategorised

Replies: 3

Last updated: 16 January 2009
Vangogh on 11 January 2009

Category: Uncategorised

Replies: 3

Last updated: 13 January 2009

Grape Seed Extract
by Colin Woodall (Jan 13)

Oops!!

just realised I posted the above in the wrong place.

Sorry.

by Colin Woodall (Jan 12)

Hi all,
I have just had it confirmed today during my routine 3 monthly appointment with my consultant that my latest test results of 0.0000% mean I have achieved molecular remission after having "

by Ali Loram (Jan 12)

Hi Tony, I see if you click in the News section on the left of the page you will find more information on grape seed extract. I think its very early days just yet for there to be real time results

by Vangogh (Jan 11)

Hi

Just reading about grape seed extract inviting Leukemia cells to commit suicide,and I was wondering if it would have any detrimental effect on my Glivec therapy(400mg). Has any body tried
Category: Uncategorised

Replies: 3

Last updated: 13 January 2009
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