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Thank you all for sharing your stories and all of your advice!!! Cathy I was not aware that cc patients were liver transplant cadidates. This is a hard road for all connected. She had her first chemo on friday and well. She finally relented that she should try to rest and give her body a chance to fight. She still works , a librarian – she is a retired teacher but she still wanted to be with the kids. She will only relent to a 1/2/ day off for chemo on fridays then insists on back to work on mondays! I try to tell her then to rest the weekends only do absolutes and let me do the rest!!!! Drinking is EXTREMELY difficult, it is like pulling teeth. I keep complaining and finely she will drink a little, this worries me for her kidneys. Eating well that is pretty much like a toddler. She has lost another 6 pounds. She lost 100 pounds from the whipple, she had that to loose thank God! I am not quit sure what to do about the drinking and eating, I just went through this with my mom when she was in the final stages of alzheimers but I think this is differant and am not sure how to handle? She is very stubborn, runs in the family! Her ca19-9 is only 11.4 and alk phos is 177, that sounds pretty good -right?
JackieJackieh:
Welcome to the site that no one really wants to join. My husband Tom had a left resection in June ’08. They got clean margins and when we asked about chemo/radiation, his doc’s said he didn’t need it w/clear margins. They were wrong, so it’s a good thing that your Sister got chemo “Just in case”…My husband also encountered a reoccurance some 18 months later when he turned jaundiced. His then oncologist told him that radiation/chemo would not help and told him to go home and get his affairs in order, that he had 6 months at the most.
I did not listen to that, and took my husband for 2nd, 3rd and 4th opinoins. Thank heavens I did! Cause they agreed with the inoperable part, but stated that radiation/chemo ‘could’ help him. He underwent 28 rounds of radiation, then oral chemo, Xledoa and when a radiologist read a scan wrong, they inserted a part and he started IV chemo (Gemzar and Cisplatin) and he had around 8 infusions…He lost a lot of weight and is slowly gaining that weight back. His new normal for his numbers are high, but his tumor markers are down. He currently has an external drain bag that collects the bile, keeping his bilirubin down to about 6,000. His alk phosphate remains high at about 850 (down from 1958) but apparently these numbers are his new normal.
His oncologist told us at his last appointment that this turned out way better than she expected back in Dec. ’09. He is now going about 2 months between appointments with his oncologist, and gets his biliary tube exchanged every 4 weeks. His interventional radiologist feels that he may be able to get an internal stent in within the next two months. That would be awesome cause then he can lose the external drain bag and feel even more ‘normal’.
All this is leading up to the fact that he is still here some 20 months after he was given ‘six months at the most’.
Things to do or not do during chemo….eating may be difficult because the chemo changes the taste buds. If your sister can’t eat, she should drink Boost or Ensure. Her cancer center should be able to give her samples and coupons.
Eat 6-8 small ‘meals’ per day rather than just three.
Focus on high protien foods. Whole milk, half and half in cooking and in malts/shakes.
Cheese, peanut butter are good sources of protein.
Accept help when offered. Do one chore a day to keep yourself moving. Sleep when tired. Ask for help if/when you need it.Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Jackie, welcome and sorry you had to find us. I am a CC survivor due to a liver transplant. I will be cancer free for 2 years on May 24,2011.
Unfortunately negative biopsies are very common, I was lucky and had a doctor who knew it wasn’t negative. I love sharing my story because it is the one way I can honor my donors. (I had 2 transplants) You can read my story at http://www.thetelegraph.com under christmas miracle.
I did chemo and radiation first and there is no hair loss, naseau is pretty much controlled by lots of different meds, and tiredness is pretty minimal nothing naps can’t help. The worst for me was after all treatments, about 4 months total, being very wiped out. It is now 2 years later and celebrating my first health mothers day-there is hope.
I always tell people about Barnes-Jewish Hospital in St. Louis MO. it is one of the few CC centers in the country and is headed by Dr. William Chapman, he is a miracle worker!! Please feel free to e-mail me if I can help.
Lots of prayers-CathyThanx to everyone! Yes we have had a second opnion. She is being treated out of St. Joseph’s Hospital in Ann Arbor, MI., the second opnion was from the U of M. She was not willing to travel so. After her original whipple she had a round of radiation and chemo with just gemzar. The original tumor was fairly large but she did have a great surgeon, Dr. Ed Kreske out of St. Joe’s. He did a remarkable job, surgery lasted over 9 hours and he did a lot of resection and got really clean margins everywhere accept the liver and the tumor had pretty much grown to the end of the portal vein.She has had cysts on her liver for years that the surgeon biopsied and they were negative but this is a new spot, also may be a couple of lymph nodes invovled. Anyone got any advice on things to do or not to do during chemo?
JackieDear jackieH, welcome to our wonderful family. I am so very sorry to hear about your Sister. Gem/Cis is pretty much the chemo cocktail of choice around here. May I ask where your sister is being treated. You might want to get a 2nd opinion, we are big advocates of the 2nd and 3rd opinion because of the rarity of CC. Or you may want her to get an opinion at one of the major hospitals that deal more with CC. I undersstand how devastating it all is but try to be strong for her and know that attitude is so very important in treating CC. Please keep us posted and I know yhou are going to get a lot more welcomes.
Hi everyone! My sister was diagnosed with cc in oct 2009 just 4 months after we lost my mom to alzheimers. She underwent the dreaded whipple in nov of that year. Surgery and recovery went pretty well. They thought they got it all but put her through chemo and radiation “just in case,” the just in case has turned up. In a feb cat scan they found suspicious spots on her liver, has had cysts in past. Did first biopsy at the beginning of this month, that was negative. Doctor did not believe and repeated biopsy on different spot, that was indeed positive. She is going to be 59 in aug., I hope. Starting in two weeks she starts gemzar and cisplatin in a combo. She had gemzar before but now they are adding the cisplatin. If any one has any good news or ideas, please share. We are pretty devastated!
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