Ladies, thank you for your support. I am crying with relief. Dr. called this afternoon at 4:15. One node grew by 1mm. Could be a measuring error, could be sign the OX has lost effectiveness. 1mm since Oct 2017...I'll take it. Doc's biggest concern is bringing down the bilirubin from 3.9 to under 2. ...

Lena et al, The freaking out continues. Dr. sent another email at 11:15 this morning saying I will call you later today. DH responded to email. Then nothing. Stomach in knots. So DH is going to call hospital tomorrow and hope to be connected through or at least leave a voice mail. DH was a trooper a...

I have officially freaked out. Nurse called and said treatment was canceled for tomorrow because of low platelets. Then, while DH is taking his nap, Dr. sent an email saying treatment was canceled due to low platelets, liver function tests, and CT scan results. He will call tomorrow afternoon to dis...

Sending out good vibes for all of us with DH January scans...DH has CT and blood work tomorrow. Review results with onc on Tuesday except he usually posts them online early. Hoping scan shows stability or decrease in mets because CEA has come down a bit since re-starting the OX. However, If bilirubi...

Agree with the above breaks. DH skipped his early November treatment when we were switching regimes, so he was 4 weeks between infusions. He will probably need to skip a treatment in April as we are planning a vacation. Dr. said it's fine to do that. Dr. was willing to give him Christmas off too but...

Hope, Are you taking your Xeloda 1/2 hour after eating a lite meal? Are you drinking lots of water during the day? DH had to drop from 3000 to 2000 his second cycle because of hand/foot issues, now he is back up to 2500. His hair has slightly thinned only. Do you have an oncology nurse you can call ...

Mrs Z, I think DH's fluid was caused by lack of protein for 6 weeks after surgery, sepsis, and too much IV fluid for 2 weeks in the hospital. His legs swelled up so badly he could barely walk and the fluid also escaped into the space around his lungs, one of which had collapsed during surgery. The l...

Sending hugs Mrs Ziggy! DH had pleural effusions about 11 months ago, after his surgery. The new oncologist picked up the problem on the first visit, not the Dr. we'd been seeing for 7 weeks. They drained both lungs, 1 each day, fairly easy out patient procedures. Enormous bags of fluid. After the d...

DH switched to the Coloplast Sensura Mio Clic about a year ago. Made a huge difference in his QOL when he didn't have to empty. They are very easy to use: put on a ring if you want, the base plate (cut hole to size as usual), and add the matching size pouch. It's similar to a tupperware "pop&qu...

Yes, Xeloda can cause digestion issues. Did you get Zofran and Steroid as pre-medicine on the day of your infusion? Do call your nurse or oncologist and ask for help now and also mention this side effect before your next infusion. DH takes 1 Ativan right before bed. We keep a stash of saltines and g...

Not sure Xeloda is for DH...thinking about going back to the pump. Much worse hand/foot (he could barely walk) caused drop from 3000 mg to 2000mg 2nd round. For this 3rd round now, he's trying 2500mg and tips of fingers are slightly cracked (it's cold/snow so that hasn't helped) but feet are fine. D...

Figure out where your clothes' waistbands are! DH had an emergency stoma after a leak and unfortunately it's right where he wears his belt. So now he hikes up his pants above that and says he feels like a caricature of an old man. Sweats are more comfortable for him but he's not a fan of the style. ...

DH is having a rough time with Xeloda. Hand/foot pain necessitated a drop in dosage from 3000 mg a day to 2000 last week. Diarrhea has been a problem since the weekend; he's been taking 5-6 imodium a day and about to increase to max of 8 a day. He's also cold and sleepy a lot. Last dose was this mor...

I looked up DH"s report and it says "all genes to be wild type" so I"m guessing that means DH is Quad Wild Type. Will file that away for future reference.

Thank you to all who post articles, treatments, and other info!

M

Phatboy, DH has been told the same thing (surgery never an option) by 4 oncologists. All give the same reason, that because of the multiple sites in both lobes of the liver AND the peri involvement AND some lung nodes, that no surgery would get it all. And they won't "go in" if they can't ...