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ivanbert on 6 April 2007

Category: Uncategorised

Replies: 1

Last updated: 6 April 2007

New Member
by Elizabeth Rees (Apr 6)

Hi Yvan

Sounds like you are on the right track with Glivec. With all the new drugs now available for this disease you can look forward to watching your kids grow up. The majority of CML

by ivanbert (Apr 6)

Hi Everyone
Name: Ivan
Age : 41
Resides : Perth, Western Australia
Hospital : Royal Perth Hospital
Diagnosis: CML
Time of Diagnosis : 11/12/06
Initial thought : this cant be true . Felt as
Category: Uncategorised

Replies: 1

Last updated: 6 April 2007
Sara on 2 April 2007

Category: Uncategorised

Replies: 4

Last updated: 6 April 2007

New Forum member
by zaviemiller (Apr 6)

Y A H O O O !!! Y I P P E E E !!!
Number 1050 in the Zero Club
Zavie
Please write me at zmiller@sympatico.ca
Zavie Miller (age 68)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00,

by Sara (Apr 4)

It is good to know how people are getting on who are further on in treatment as we are still very new to all this. Hope your check up goes well. We are back towards the end of April for some more

by Elizabeth Rees (Apr 4)

Hi Sara

Glad you found us. Mike seems to be doing just great and after a bad start, which many of us have had - insensitive doctors and so on, he seems to have his life back on track and

by RACHEL HALSALL (Apr 2)

I remember my husbands diagnosis like it was yesterday! He was diagnosed in August 2004. He went to the DR. about a large lump in his abdomen and had a blood test a week later. The same day as the
Category: Uncategorised

Replies: 4

Last updated: 6 April 2007
Anonymous (not verified) on 31 March 2007

Category: Uncategorised

Replies: 4

Last updated: 4 April 2007

Blood test
by Anonymous (Apr 4)

L STRAY..Hi David Thanks for replying..my mind is more at ease now thamks Linda

by Anonymous (Apr 4)

L STRAY Thanks for your reply. I do not drink at all not too worried now about things thanks again Linda

by Dude Fred in Oz (Apr 3)

MMy Kidney counts stopped me from going on the interferon trial with Gleevic and my GP is monitoring it but advised me to stay away from Alcohol not much more to worry about unless the counts drop

by david barnes (Apr 2)

Hi I have been taking 800ml for some time now with no problem to my kidney count
Category: Uncategorised

Replies: 4

Last updated: 4 April 2007
kiruba ganesh on 30 March 2007

Category: Uncategorised

Replies: 4

Last updated: 1 April 2007

About CML
by keith Pratt (Apr 1)

Howdy Kiruba

Welcome. Thank goodness we now have this website, a great source of information for all. cml in chronic phase is a bit like diabetes, keep taking the medication and it should stay

by zaviemiller (Mar 31)

Hi Kiruba,
Welcome to the club that nobody wants to be a member of.
10 years ago patients were told that they had a 2-5 year life expectancy. Since the introduction of Gleevec and several other new

by Nancy C. (Mar 31)

Hi Kiruba,
People in chronic phase do not die of CML, so that is the good news. The goal of drug treatment right now is to keep you in chronic phase, and not have the disease progress. I have been

by Paul Cooke (Mar 30)

Hi Kiruba,
At the time of diagnosis everyone is in a state of shock, that's natural having such news.

It takes a long time to come to terms with it, but you've made a good start by coming to
Category: Uncategorised

Replies: 4

Last updated: 1 April 2007
Des on 29 March 2007

Category: Uncategorised

Replies: 5

Last updated: 30 March 2007

chicken pox
by Janet (Mar 30)

sorry Paul - I had assumed you and Paul C were one and the same. Oops!! Sorry again.

Janet

by Paul Cooke (Mar 30)

Hi Des,

I've been concerned about this matter in the past for my wife who has the cml.

She like Janet was a primary school teacher, and was worried about being more susceptible to

by Janet (Mar 29)

Hi Des
I too live in South Wales and I work as a primary school teacher, so am in frequent contact with all sorts of nasty little bugs courtesy of the children I teach. I have been very concerned

by skiinglaketahoe (Mar 29)

I work in a hospital and we often have daft parents who bring their spotty, grotty kids into the eye clinic. My consultant told me that if I had had chicken pox then I should not be too concerned.
Category: Uncategorised

Replies: 5

Last updated: 30 March 2007
MJS on 29 March 2007

Category: Uncategorised

Replies: 5

Last updated: 2 April 2007

Any Ideas?
by MJS (Apr 2)

Hi Susan,
Thanks for the Congrats!! Yep, I'm pretty stoked about our baby news...the wee one is due this September!
I think that's why I'm trying harder than ever to get answers about my treatment

by skiinglaketahoe (Mar 31)

fantastic news, Matt.
You must be so excited, it is lovely to hear good news and the CML treatment will work out...........
Keep positive
Susan

by Bee (Mar 29)

Don't really know, but it took Ted about 15 months of 800mg to reduce from about 0.4 (at which he stuck for about 3 years on 400mg) to 0.1....

Hopefully it's gone down a bit more now, but will

by skiinglaketahoe (Mar 29)

Hi Matt,
I am sorry to hear the first month with the increased dosage did not bring about any reduction. You must be disappointed. I hope that maybe a couple of months may bring some change about.
Category: Uncategorised

Replies: 5

Last updated: 2 April 2007
Paul Cooke on 28 March 2007

Category: Uncategorised

Replies: 2

Last updated: 29 March 2007

CARDIAC EFFECTS OF GLIVEC
by Steven D (Mar 29)

Hi,

I was Dx Aug 2004. Early last year I started to have chest pains so my Consultant at HH wrote to my GP and suggested I was put in touch with a cardiologist. I had the usual Stress test ECG

by (Mar 28)

Hello Paul
I am treated at the Royal Hospital in Liverpool and my Consultant Proffesor Clarke is asking all his CML patients will they undergo a heart scan and an ECG test to find out whether

by Paul Cooke (Mar 28)

Some of you may remember last year a scientific journal raising concerns about possible cardiac effects of Glivec - in particular the potential for casuing congestive cardiac failure.
You may be
Category: Uncategorised

Replies: 2

Last updated: 29 March 2007
nosila on 26 March 2007

Category: Uncategorised

Replies: 5

Last updated: 28 March 2007

we made our silver wedding
by David (Mar 28)

Alison and Billy
Congratulations! What a great milestone.
We all remember the day of diagnosis and the shock of a prognosis. Val was diagnosed just 6 months after we married in our mid-fifties - we

by Paul Cooke (Mar 28)

How good that you could reach this memorable milestone. I know that in 1997 treatment options were not what they are today, but even in 2003 when my wife was diagnosed, we were NOT led to believe

by Elizabeth Rees (Mar 28)

I was diagnosed in Feb 1999 and told I had the 3-5 years at best and my greatest sorrow at time was that I would not get to see my grandchildren. I am now a proud grandma with Tamzin who is 27

by Diana Green (Mar 27)

Diana G

Dear Alison and Billy,
Many congratulations on your silver wedding anniversary! It must have been terrible for you when Billy was originally diagnosed just before Christmas back in
Category: Uncategorised

Replies: 5

Last updated: 28 March 2007
Elizabeth Rees on 26 March 2007

Category: Uncategorised

Replies: 1

Last updated: 26 March 2007

New Member - Brian Goodier from Wales
by Swede (Mar 26)

Hi Brian

Welcome to the site.

I was diagnosed a month or so before you and was interested to see your post as I am also on the SPIRIT trial with the Glivec and weekly interferon

by Elizabeth Rees (Mar 26)

Brian

I have taken the liberty to copy your post to the Forum as it was hidden under the 'what could have caused me to develop CML' section, hence the lack of replies to welcome you to the
Category: Uncategorised

Replies: 1

Last updated: 26 March 2007
ken on 23 March 2007

Category: Uncategorised

Replies: 1

Last updated: 25 March 2007

IS ANYONE IN THIS FORUM FAMILIAR WITH MEDICARE PART B AND GLEEVEC COVERAGE?
by ken (Mar 25)

Thank you everyone for emailing me and explaining it in great details. Now I know that part A covers hospital; B for doctors and D is for medicines.

Thanks,

ken

by ken (Mar 23)

Hi and thank you for reading my post. I am having problem finding the answer for this question. Next month, I'll be getting medicare part A and medicare part B. I'd like to know if part B will pay
Category: Uncategorised

Replies: 1

Last updated: 25 March 2007
KennyD on 23 March 2007

Category: Uncategorised

Replies: 5

Last updated: 29 March 2007

PCR / FISH results
by KennyD (Mar 29)

Thanks a lot for your replies - very informative. A complicated subject indeed...and one which I, as a non-medical mere mortal may never fully get to grips with.
Anyhow, I think I know enough now

by zaviemiller (Mar 27)

Hi Kenny,
Let me try and explain it.
15% CML cells is always 15%.
You need to know the number of cells tested and the number of CML cells found in order to calculate the %.
A FISH test usually looks

by sandy craine (Mar 27)

hi kenny....... quantative PCR measures the % of bcr/abl present in the marrow.
FISH is only sensitive to around 200 cells and marks PH+ cells with a flourescent dye which makes the abnormal cell

by KennyD (Mar 27)

Thanks for that Sandy - still confused as to why 15%+ by FISH does not roughly equate to 15%+ by PCR. The PCR just seems to be a more sensitive test. I think it may be something to do with the '
Category: Uncategorised

Replies: 5

Last updated: 29 March 2007
Elizabeth Rees on 20 March 2007

Category: Uncategorised

Replies: 2

Last updated: 21 March 2007

CML Survey - Four more volunteers please !
by Janet (Mar 21)

I'd just like to back up Marian's comments - I'd forgotten I'd volunteered to do this [imatinib memory loss?? :-( well that's my excuse anyway! :-)]. So it came as a bit of a surprise when the phone

by mariansy (Mar 20)

I have done this and it really is very easy - The questions aren't too personal and it only took about 20 - 25 mins.
Marian

by Elizabeth Rees (Mar 20)

Volunteers from the UK please only. Sophie needs just four more people. It is only a phone survey, very easy, and you get £25 and CML Support gets a donation ! Please help.

Elizabeth
We
Category: Uncategorised

Replies: 2

Last updated: 21 March 2007
sal on 20 March 2007

Category: Uncategorised

Replies: 1

Last updated: 20 March 2007

trial criteria
by Elizabeth Rees (Mar 20)

Hi Sal

I'm sorry I can't tell you for sure one way or the other. I am sure Graham Smith will reassure you and if need be make a case to Novartis for Rob. Don't worry unduly. Good luck for

by sal (Mar 20)

Hi, just wondered if anyone could tell me if being on medication for other conditions would exclude someone from taking part in a trial?

Rob's 21 month pcr has come back at 8% up from 3.7% at
Category: Uncategorised

Replies: 1

Last updated: 20 March 2007
Dude Fred in Oz on 19 March 2007

Category: Uncategorised

Replies: 6

Last updated: 23 March 2007

Taking Glevic and weight gain.
by Dude Fred in Oz (Mar 23)

Keith,
Thanks for the information, on the weight gain for me I think it has more to do with the stomach issues and tiredness. I say the because yes I love my food but I have always used exercise (

by keith Pratt (Mar 22)

Howdy Fred

As Elizebeth says, try tking Glivec with your main meal of the day, actually in the middle of eating rather than atthe begining or the end. I never have found any difficulty with

by Dude Fred in Oz (Mar 20)

Thanks for the reminder on this I did read something on this in another forum and will give (or better give up caffine) a try.
If it works for my I will pass this onto my Oncologist.
Regards
Fred

by Dude Fred in Oz (Mar 20)

Elizabeth,
Thanks much, I live just outside Melbourne but work in the CBD.
I think I will try taking Glevic at night as before I started I was never much of a big breakfast person but now to
Category: Uncategorised

Replies: 6

Last updated: 23 March 2007
KennyD on 16 March 2007

Category: Uncategorised

Replies: 9

Last updated: 18 March 2007

Massage - OK?
by David (Mar 18)

It was a terrible thing to happen in the first few weeks after diagnosis.
No, they didn't send out the health form in advance and added insult to injury by subsequently suggesting they had sent them

by Bee (Mar 18)

That's a terrible thing to happen. How insensitive can these people be ? I can understand, in a way, about the insurance issue in these days of Claimant Culture - but surely they could have given

by David (Mar 18)

Val's consultant advised that massage is fine with CML. The need to ask arose because of a horrible incident at a well-known health spa.
Val was bought a massage as a gift by a friend just after

by Diana Green (Mar 17)

Diana G
Thanks for the replies: glad I'm not the only one wearing woolly scarves and thermal underwear. Thought I was getting paranoid for a moment - e.g.'There are rats living under the hen house
Category: Uncategorised

Replies: 9

Last updated: 18 March 2007
kestrel on 14 March 2007

Category: Uncategorised

Replies: 1

Last updated: 17 March 2007

Thanks everyone
by Rio (Mar 17)

Hi Kestrel and others thanks for welcoming me to this great site.
Rio

by kestrel (Mar 14)

Hi everyone,

Just want to say thank you for welcoming Rio! He's really keen on using the site now and its helping him tremendously knowing that he's not on his own. Also great for helping him
Category: Uncategorised

Replies: 1

Last updated: 17 March 2007
Rio on 12 March 2007

Category: Uncategorised

Replies: 9

Last updated: 18 March 2007

Hi everyone
by Coyney (Mar 18)

Hi Rio,
I didn't take Glivec at diagnosis. My brothers and sisters were tested for possible bone marrow matches a week after diagnosis, a month or so later I found out my brother was a match so I

by Rio (Mar 17)

I was wondering how long you were taking glivec for.

ATB Rio

by sandy craine (Mar 15)

hi rio, welcome to our group and thankyou for your message about my'cure'... i really do hope you too, and as many people as possible, get to say that word someday.
have you seen max horwoods diary

by Coyney (Mar 15)

Hi Rio,
I was admitted on the 20th November 2005, after all of the chemo I had my transplant on the 30 November 2005 and was allowed to go home on the 15th December 2005. So all in all I was there
Category: Uncategorised

Replies: 9

Last updated: 18 March 2007
Bee on 12 March 2007

Category: Uncategorised

Replies: 7

Last updated: 15 March 2007

Dry, Cracked Nostrils
by Bee (Mar 15)

Hi Rio,

Ted got diagnosed with cml nearly 6 years ago. We were on holiday on a motorbike in Spain when we found out. He had to wait a little while before he could go onto Glivec, but it's

by Rio (Mar 14)

Hi Bee i hope the naseptin and coco butter works and hope your getting on well.How long had Ted had cml for? Iv had it for 8 monthes.:>

ATB Rio

by Bee (Mar 14)

Hi All
Thanks for your replies. Ted made an appt and saw his GP. He said it was very infected up inside the nostrils and prescibed Naseptin as Kestrel has used. Back in two weeks if no better.

by Rio (Mar 12)

Hi Kieth iv had dry skin before but i use palmers coco buter and iv usedthat for 2 years before i was diagnosed with cml because i have natruly dry skin.Maybe it would help you :>

Best of
Category: Uncategorised

Replies: 7

Last updated: 15 March 2007
Barbs on 10 March 2007

Category: Uncategorised

Replies: 1

Last updated: 10 March 2007

Message for Elizabeth
by Elizabeth Rees (Mar 10)

Emailing you privately. Which email address are you using ? The CML Support one is not valid any longer. I use erees@hotmail.com and info@cmlsupport.org.uk

Looking forward to seeing you

by Barbs (Mar 10)

Dear Elizabeth,

I know the forum's not for this, but my reply to your message has just come back again for the second time, it says that your account is temporarily suspended.

Have e-
Category: Uncategorised

Replies: 1

Last updated: 10 March 2007
Suzie Q on 9 March 2007

Category: Uncategorised

Replies: 2

Last updated: 10 March 2007

PCR RESULT
by Coyney (Mar 10)

Hi Suzanne,
Congratulations that's really good news, keep up the great work.
All the best,

Martyn
Please sponsor me!

by zaviemiller (Mar 10)

Hi Suzie,
Technically it means that you have achieved a 3 log reduction in your leukemia via a PCR test. This means that the amount of CML that you have in your body is 1,000 times less than when

by Suzie Q (Mar 9)

Finally, 14 months post diagnosis I have had my first PCR test and result which is 0.03. My doc sez this is a Major molecular remission and i was entirely shocked at what he said and more or less
Category: Uncategorised

Replies: 2

Last updated: 10 March 2007