new member

Report post · November 17, 2009

Thanks . It is still all a bit daunting though I'm encouraged by stories

like yours and others. I have my 6 month bone marrow in a couple of weeks which

I'm not much looking forward to although am keen to know if the cytogenics

confirm the PCR data I've seen. This has already been a life changing thing and

not all of it bad. It has provided a new perspective. Still early days I know.

> >

> > Hi all.

> >

> > Zavie mentioned this group to me and suggested I join and introduce

myself. After an initial period trying not to find out too much about CML nor

talk to other patients, I've become braver.

> >

> > I'm 42 and live in London, UK, with my wife and two boys (7 and 10). I was

Dx in May 09 following a routine blood screen. No symptoms - but the screen

showed high platelets (> 1100) but only very slightly raised WBC (just 15). I

was referred to my local hospital which initially didn't think it was leukemia

but on doing cytogenics discovered 80% Ph+ve cells, which was a shock. My

" break " was also described as unusual and because of that, they referred me to

the Hammersmith hospital in London, under whose excellent care I've been since.

> >

> > Fortunately, they said they saw no reason why imatinib wouldn't work. Being

" odd " I was worried but so far they have been proven right as my blood counts

were normal in just over 3 weeks, and settled down quickly. I've not had new

cytogenics done or FISH results yet, and the last time I went to the Hammersmith

they hadn't been able to do PCR. However, I'm also visiting my local hopsital

and they have just received PCR results from the Hammersmith. I'm a bit

cautious about them but they look good - 83% at diagnosis was 0.063% in

September - a little over 3 months. I was quite surprised and want to see that

confirmed by more tests, but it was good to see.

> >

> > I now feel lucky to have been Dx'd in the imatinib era and more confident

about the future - especially seeing so many here who've been on Gleevec for so

long. I know it can stop working but 6 months ago I would have taken where I am

now, and side effects are few. To show some gratitude to my medics and esp the

Hammersmith, I've also begun to help out with fundraising for their research.

Every little bit helps and I've learned how easy (and fun) it can be to put

something back.

> >

> > Looking forward to chatting to you, and good luck to you all.

> >

> > Regards

> >

>

Report post · November 30, 2009

All

Thanks so much for all your messages of encouragement.Â I'm relieved to report

that I saw my consultant at the Hammersmith today and he said " good news - we

cannot detect the leukaemia by PCR " .Â As an added bonus, he said there was

really no point in doing the bone marrow and advised me to escape before anyone

noticed.Â

I know this isn't the end of the road by any means but it's as good a start as I

could wish for. I've had such fabulous support from friends and family, and the

CML groups I've joined.Â And I've met aÂ bunch of great people in the journey

so far. I know I'm lucky and am going to keep on helping with fundraising for

future research, as well as the current challenge we have in the UK to get the

decision of our health authority not to recommend funding dasatinib and

nilotinib as second line drugs.Â

Best wishes to all, and keep well.

________________________________

From: Zavie <zmiller@...>

Cc: willoughbyr@...

Sent: Mon, November 16, 2009 9:57:26 PM

Subject: RE: [ ] New member

Â

O!!! YIPPEEE!!!

Number 1283 in the Zero Club

Zavie

Welcome to the group .

Zavie

_____

From: groups (DOT) com [mailto:groups (DOT) com] On Behalf Of

willoughbyr@ ymail.com

Sent: November 16, 2009 4:56 AM

groups (DOT) com

Subject: [ ] New member

Hi all.

Zavie mentioned this group to me and suggested I join and introduce

myself. After an initial period trying not to find out too much about CML

nor talk to other patients, I've become braver.

I'm 42 and live in London, UK, with my wife and two boys (7 and 10). I was

Dx in May 09 following a routine blood screen. No symptoms - but the screen

showed high platelets (> 1100) but only very slightly raised WBC (just 15).

I was referred to my local hospital which initially didn't think it was

leukemia but on doing cytogenics discovered 80% Ph+ve cells, which was a

shock. My " break " was also described as unusual and because of that, they

referred me to the Hammersmith hospital in London, under whose excellent

care I've been since.

Fortunately, they said they saw no reason why imatinib wouldn't work. Being

" odd " I was worried but so far they have been proven right as my blood

counts were normal in just over 3 weeks, and settled down quickly. I've not

had new cytogenics done or FISH results yet, and the last time I went to the

Hammersmith they hadn't been able to do PCR. However, I'm also visiting my

local hopsital and they have just received PCR results from the Hammersmith.

I'm a bit cautious about them but they look good - 83% at diagnosis was

0.063% in September - a little over 3 months. I was quite surprised and want

to see that confirmed by more tests, but it was good to see.

I now feel lucky to have been Dx'd in the imatinib era and more confident

about the future - especially seeing so many here who've been on Gleevec for

so long. I know it can stop working but 6 months ago I would have taken

where I am now, and side effects are few. To show some gratitude to my

medics and esp the Hammersmith, I've also begun to help out with fundraising

for their research. Every little bit helps and I've learned how easy (and

fun) it can be to put something back.

Looking forward to chatting to you, and good luck to you all.

Regards

Report post · November 30, 2009

That's GREAT NEWS ! Keep up the good work. I just want to say I

support your efforts in the UK to get those other drugs approved, it's no

good just relying on one.

Troxel

On Mon, Nov 30, 2009 at 7:47 AM, Willoughby

<willoughbyr@...>wrote:

>

> All

>

> Thanks so much for all your messages of encouragement. I'm relieved to

> report that I saw my consultant at the Hammersmith today and he said " good

> news - we cannot detect the leukaemia by PCR " . As an added bonus, he said

> there was really no point in doing the bone marrow and advised me to escape

> before anyone noticed.

>

> I know this isn't the end of the road by any means but it's as good a start

> as I could wish for. I've had such fabulous support from friends and family,

> and the CML groups I've joined. And I've met a bunch of great people in the

> journey so far. I know I'm lucky and am going to keep on helping with

> fundraising for future research, as well as the current challenge we have in

> the UK to get the decision of our health authority not to recommend funding

> dasatinib and nilotinib as second line drugs.

>

> Best wishes to all, and keep well.

>

> ________________________________

>

Report post · April 23, 2010

Hi, I am a new member. I am from Albany, NY. MY son is 11 now, he was born with

bleph. we went through lots of opinions and opthalmologists. We finally found a

great surgeon that did a wonderful surgery when he was about 7. He is in

Philadelphia, PA at the Childrens Hospital, Dr. Katowitz. My son had severe

ptosis. I will post some pics soon of before and after. I still do have lots of

questions about this rare eye condition. But I was wondering if anyone knows if

there are any other related neurological disorders along with the condition. He

seems to have poor motor skills, and he is sensitive to loud noises like loud

crowded places, he seems to be slowly overcoming this but I still wonder if

there is any other information that anyone knows. I am so happy I found this

group, there is not a lot of info about this and we do need to group together

and find out more. People seem to think its not that big of a deal but being a

parent and not ever expecting a child to be born with it is very difficult. I

was a young parent when I had him and now I would love to help others out with

more info and find out more myself.

Report post · April 24, 2010

Hi!

I can only imagine how daunting it must have been for you to have gotten that

diagnoses and he seems to have gone through a lot already in his life!

In all the information that I have read through, it keeps saying that there is

no neurological side effects. However, with him no doubt spending so much time

in hospitals (and having tests and all the rest done), where there is a lot of

noise and strangers around, the crowds and loud noises may remind him of that.

I'm new to this group too but, in my experience, you will get loads of feedback

and support here. I know that it has helped me loads already!

Pam - Ireland

>

> Hi, I am a new member. I am from Albany, NY. MY son is 11 now, he was born

with bleph. we went through lots of opinions and opthalmologists. We finally

found a great surgeon that did a wonderful surgery when he was about 7. He is in