newly diagnosed...

[Guest guest]

To be quite honest with you I am worried that maybe it is AML with Ph+ - because

of the discrepancy in the numbers...I will be confirming this again with her

tomorrow...I had bloodwork done last week to check for mutations and hopefully

that will come back good...it is so stressful waiting for results...I have some

back pain today but not sure if its from the disease or sitting at the computer

too long...every little pain I get - I get that moment of panic wondering what

it is...can't wait for that second opinion

Cheryl

> > > >

> > > > Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase

CML - Zavie has given me this site and promised it is the best there

is...I am currently on 800mg Gleevec but I will be starting Sprycel shortly as I

am getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less

than 1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down

to 11 - the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my

blasts were gone...my BMB showed 14% in the marrow and that is why my onc. has

stated that I am in accelerated phase...Zavie (and many others on another site)

have suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

> > > >

> > > > So far I have found that many people are willing to share their

experiences and I am so grateful for that...it is good to know that so many

people are responding well to the drugs...I guess I would like to hear from

someone else who was diagnosed in accelerated phase and know how they are

progressing on the drug protocols now available..any of information or guidance

would be great...I've got so much to learn about this disease

> > > >

> > > > Thanks!

> > > >

> > > > Cheryl

> > > >

> > >

> >

>

[Guest guest]

Cheryl,

Welcome to the reluctant members club! There are many folks on this list with a

wide range of experiences with CML who can answer any questions you may have or

just offer support.

I'm sure you feel like you've been swept into a whirlwind with lots to learn and

understand while trying to emotionally process what is going on.

Good luck and, of course, ask any questions you might have!

Beth

[ ] newly diagnosed...

 

Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase CML -

Zavie has given me this site and promised it is the best there is...I am

currently on 800mg Gleevec but I will be starting Sprycel shortly as I am

getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less than

1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down to 11

- the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my blasts

were gone...my BMB showed 14% in the marrow and that is why my onc. has stated

that I am in accelerated phase...Zavie (and many others on another site) have

suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

So far I have found that many people are willing to share their experiences and

I am so grateful for that...it is good to know that so many people are

responding well to the drugs...I guess I would like to hear from someone else

who was diagnosed in accelerated phase and know how they are progressing on the

drug protocols now available..any of information or guidance would be

great...I've got so much to learn about this disease

Thanks!

Cheryl