DH has a permanent stoma after the reconnect failed a week after the tumor removal. He has switched from emptying/cleaning pouches to 1-time use system called Mio Click. Yes, you still have to find a bathroom but you just remove the pouch, put it in a special ziploc disposal bag, and throw it out. T...

Abso-freaking-lutely. At the oddest times and the weirdest places. I get jealous watching old couples plod around the grocery. I cry in the shower. I despair because I can't fix this.

DH has the same drip. We were told it's because of the decreased nose hairs, everything just flows out.

DH had zofran and steroids as pre-meds in his IV, and zofran and compezine pills to take at home. He never even used the pills.

I"m thinking DH has similar issue...CT scan last week showed gallstones and bilirubin is up to 6.5. He's not jaundiced looking. We meet with the oncologist on Tuesday and I am going to request an ultrasound. I wonder if there is something blocking the flow from the liver like a gallbladder full...

Could you elaborate on "extra stress to liver markers"? DH's bilirubin is up to 4.5 and he is extremely fatigued. I don't want to impact it further. I thought about buying a box of Tagamet but haven't so far. Have been giving him extra Vitamin D along with regular vitamins and extra juice....

Yep...us too...about 1.5 L drained Monday and again on Tuesday from lungs. Breathing much better but appetite not much. CT scan also revealed 2 cm growth in 2 liver tumors and also growth of lung nodes since January. FOLFOX done but it worked 18 months. Oncologist called this afternoon and said DH c...

Thank you for doing this! I will wave at you tomorrow as I drive by NIH every day to get to my office. I say prayers each time I go past the staff entrance that the doctors are successful there.

Is this the same type of study as the one we read about at Stanford a few months ago? I seem to remember they starting recruiting for the trial but only for Leukemia patients?

If you try Xeloda and don't like it, ask to switch to 5FU. DH was on 5fu and switched to Xeloda after a year. He got such bad diarrhea and hand/foot syndrome that he asked to switch back to 5fu after 2 months.

M

Infusion went fine today. Dr. ordered a CA 19-9 test today, first time for it. He normally just orders a CEA every month.

Well that was fun...DH was complaining about shortness of breath Sunday evening. He also seemed warm. Temp showed 101.3 at 8:45 p.m. Up to 101.7 at 9:15...call dr. He says get to the emergency room and prepare to stay overnight. He called ahead and they saw us almost immediately. Temp over 102. Bloo...

Yes, questions need to be asked! What makes this cancer so tough, so different? Why can we put other types into remission or cure and not this one YET? What is being done to move research forward more quickly? Is there a cure waiting around the corner but it will just take a west coast doctor and an...

DH had a few margaritas last weekend while we were on vacation in Florida. Even had the permission of his oncologist! Perhaps a dozen a day isn't the way to go because it would too much pressure on liver.

Susan, YES, in response to your question. DH found the side effects from the Xeloda much worse than the 5fu. He was taking 8 Imodium a day and I thought we were going to have to ask for the prescription stuff. I was grateful he had a colostomy pouch! He lost 3 pounds in 7 weeks which isn't much but ...