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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
kathy on 9 March 2007

Category: Uncategorised

Replies: 2

Last updated: 14 March 2007

anemia
by Elle (Mar 14)

Hya Kathy
My dosage was increased too 800mgs in Oct 2006. Since then my blood counts have been up and down. At the start of the year they dropped a fair bit. I became anaemic. I've not been given

by kathy (Mar 12)

hi,does anyone have any suggestions,thanks kathy

by kathy (Mar 9)

Hi all,had an appointment on wednesday and my latest bcr results were negative ,she did say i was becoming enemic and said it was through the higher dosage {gone from 400 to 600mg}.is there anything
Category: Uncategorised

Replies: 2

Last updated: 14 March 2007
arrowsc on 9 March 2007

Category: Uncategorised

Replies: 6

Last updated: 11 March 2007

PCR dissapointment
by arrowsc (Mar 11)

Thanks for all the positive responses, I think that after all my results after dx had been lowering and ' better than the last one ' this one just came as a bit of a blow as i was kinda hoping for

by ypoulton (Mar 10)

My pcr bounced about quite a bit last year it bounced up from0.003 to 0.15 which frightened me and my family since then it has been at zero for the last 3 it has taken me almost 4 years to get to

by Annie Kennedy (Mar 9)

Sorry that you are upset about your PCR results but they really can bobble around and that's just something we have to accept - PCR monitoring is not a perfect science. I was dx over 3 years ago,

by sue (Mar 9)

susan dickerson

Hi last time I went to see the consultant she told me that my PCR was a little up and advised me to go back in 8 weeks instead of 12 weeks to check my PCR sooner. Must admit it
Category: Uncategorised

Replies: 6

Last updated: 11 March 2007
sandy craine on 8 March 2007

Category: Uncategorised

Replies: 17

Last updated: 18 March 2007

CURED? my doctor says yes!!!
by Lesley (Mar 18)

It was really great to read your news, it makes everything we go through worth while. I am in the same boat as you, reduced intensity transplant and after my 2nd lot of donor lymphocytes (at 14

by Elle (Mar 14)

Hi Sandy
All the best. You deserve it!!!!!
Elaine

by Rio (Mar 12)

Hi Sandy iv just joined the website a few minutes ago but kestrel my carer has told me about you.

Iv heared that you are now free of cml and im really pleased for you and one day hopefuly

by CherylAnne (Mar 12)

Hi Sandy,
I wanted to take the opporutunity to congratulate you on this list to follow up the private e-mail. Such good news should be savored repeatedly;-)
As one of your many other friends said,
Category: Uncategorised

Replies: 17

Last updated: 18 March 2007
Elizabeth Rees on 8 March 2007

Category: Uncategorised

Replies: 1

Last updated: 9 March 2007

Karen Morris Memorial Trust - Karen's Home from Home
by marisa (Mar 9)

Hi All,
This is great!!
Remember how many horrible nights I spent in Hosptial trying to sleep on these stupid chairs whilst Chris was in....
This way carers and patients can get a bit of "normality

by Elizabeth Rees (Mar 8)

Steven has kindly composed a few lines on the Karen Morris Memorial Trust. Please take a look at the amazing work they have done. Karen's mother Sylvia is an inspirational woman and I wish her
Category: Uncategorised

Replies: 1

Last updated: 9 March 2007
jjhollis100 on 7 March 2007

Category: Uncategorised

Replies: 2

Last updated: 9 March 2007

Slow Coach!!!
by Annie Kennedy (Mar 9)

Hi - just to say I was dx over 3 years ago and had similar experience to your in the first year. It seemed that everyone else was reaching CCR in a few months and I was not - had all sorts of

by MJS (Mar 8)

Hello!
Just read your post and thought I'd reply seeing that I've gone through a pretty similar situation...
I was diagnosed in Oct 2005 and went straight onto 400mg Gleevec, my first PCR was 28%

by jjhollis100 (Mar 7)

Hello All
I'm now getting concerned about how quick or should i say how slow my CML is reducing, i had the results back from my BMB which shows i'm 35% PH+ this is after taking Glivec 400mg since
Category: Uncategorised

Replies: 2

Last updated: 9 March 2007