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Looking for Hope AGAIN

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Well, chemo got put on hold because of hgh liver studies due to oxali (since I'm not drinking anymore) and low platelets (also due to oxali)
Probably just as well because my CEA level went up despite treatment. CEA has always been a good indicator for me and now it's at its highest level yet.
Have an appt to discuss with onc my next step next wed. THough I think i'll ask for a CAT first (tumors have always been too small for a PEt scan)
Have used folfiri with avastin, folfox with avastin, camptosar and erbitux and naturopathy for 6 months.
Surgery and RFA not an option because my mets are too widespread in lungs.
Only option left I'm aware of is an oldie, mitomycin. THis was suggested by an onc I went to for a second opinion about a year ago at Dana Farber.
Any thoughts and/or other possible options would be greatly appreciated.
Mary
I would like to see my daughter married and she doesn't even have a boyfriend yet!

crazylady
Posts: 544
Joined: Jun 2004

Hi Mary,
I'm so sorry that the chemo you're doing now doesn't seem to be working. I don't really have any advice, but maybe giving mitomycin a try is a good idea. Also, have you looked into any drug trials?
Take care,
Jamie

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

A second opinion maybe ? Sometimes some Doctors wont do surgery and some would...
Don't lose hope !!!!!!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Aw, Mary...I am sending healing vibes.

Mitomycin is what they are using, line one, for my sister's rectal cancer...supposibly this 'oldie but goodie' has less wear-and-tear on the patient, according to her onc.

CEA was never good for me, but still sent ME into a spin when it went up a few months ago...this beast is SUCH a terrorist!!!
Please keep us posted about Wed.

GREAT BIG hugs, Kathi

jams67's picture
jams67
Posts: 927
Joined: May 2006

I don't know any words of wisdom, but I will send a special prayer up just for you.
Jo Ann

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

I don't know of anything but I too will send an extra prayer that something will come your way! Never give up the hope!

AveriRN's picture
AveriRN
Posts: 61
Joined: Aug 2004

Sending prayers your way for strength and renewed hope.

Averi

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Sending prayers that the elevated CEA and liver functions is just a fluke and caused by something else. I know that my GP called me after some blood tests that my liver functions were elevated. Had me in a tizy. I had an appt with my onc and he said that they are only up 5 pts over average. Nothing to worry about. My CEA has stayed under 1% so I think I will go with his dx. HUGS and thinking of you.

Lisa F

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Mary,

I have no advice. I wish I did. I am sending more hugs and prayers your way.

Maybe the new drug will zap those cancer cells.

Good luck and keep us posted. I will send you an email

Maureen

joyceann619's picture
joyceann619
Posts: 33
Joined: Jul 2004

Hi Mary,
You and I are kind of in the same boat. CEA is a good indicator for me as well. I have followed the same chemo regimens as you and no improvement during my last CTscan. My onc recommended Clinical Trials. I have an appt on Monday to see which trials I match up with.
Can your onc recommend a Clinical Trial group near you?

Keep your hopes up! We are all in this together!
Joyce

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