My Husband and Cholangiocarcinoma
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Hey, Margaret and Tom keep that good news coming. It is really a good news day around this site today.
Hi Margaret,
Thanks for sharing the good news. I am glad to hear that Tom is eating much better now. I hope that the pet scan shows some more good results and that Tom can get the stent placed.
My best wishes to you both, and as always, keep kickin it big time!
Gavin
Good news today! Tom’s bilirubin level is now down to 5.9, his tumor markers are also coming down. Almost one week into Chemo (Xeloda) and his doc has backed him off a bit on that. Only 5 pills 1x a day today and tomorrow. Nothing for Sat/Sun. Then back to 5 pills 2x a day the next week then he gets one week off. So far the only side effect that we have noticed is that he had some bowel movement problems so that is why the doc is cutting back a bit.
He is still not gaining weight, but he has not lost anymore either. Boost Plus is helping and now since the kidney stone is gone, he is finally eating MUCH BETTER!!!
Next friday they will be trying to place the internal stent. The doc had to flush the external drain last week and he now can see the contrast going past the tumor and into the intestine. He is very positive that he will now be able to place the internal stent (keeping our fingers crossed as Tom hates the external drain!)
He will also be having his pet scan next week and we’re hoping for something positive!
We are KICKIN’ this cancer in the behind!!!
Go with God and KEEP KICKIN’ THAT cancer
Margaret
Hi Margaret,
Thanks for sharing this news. I am glad to hear that Tom’s bilirubin levels are dropping further and I hope the chemo works well for Tom. I can’t help you with your questions regarding these drugs or treatments as my dad never had these. His pain meds were Solpadols, mixture of paracetamol and codeine and they seemed to work for dad most of the time.
My best wishes to you and Tom, and as always, keep kickin it!
Gavin
Great News Today!
Tom’s Bilirubin level is down to 6.6 and his cancer doctor (The one who runs the show) has made the decision that he can start chemo tomorrow. Because of his much lower bilirubin level she feels that the tumor has shrunk enough that he can start it now before the liver is stented (Gawd, I hope she is right!) Instead of 6 Xeloda pills 2x a day she has decided that he should take 5 pills 2x a day, and I think this is because of his weight.
She also gave him some new pain pills Tramadol 50mg which should hopefully not cause the swelling of his feet like Vicodin was doing. We finally figured out that the feet swelling was caused by the Vicodin. He didn’t need to take any vicodin for about two days and his feet went back to normal, but once he started taking it again…the feet started to swell.
Has anyone else on this site experienced edema of the feet while taking Vicodin?
She also prescribed Ondansetron ODT 4 mg tablets – take one tablet 30 minutes before chemotherapy. This tablet is placed on the tongue to dissolve. He has 10 tablets at a cost of $110.00. At over $10.00 a pill or $20.00 a day I certainly hope that they work!
Has anyone had any experience with Ondansetron for nausea and if so how did it work?
Now onto the Xeloda (Capecetabine) – what can I as his caretaker expect him to be experiencing? His doc told us to watch for Fever, bleeding, headaches and new pain…
What have others who have taken Xeloda in pill form experienced? Hair loss? (I’m actually looking forward to loosing my hair if he looses his!) Nausea? If so, how bad? Vomiting or just feeling nauseated? How soon can one expected to start feeling nauseated after starting the pills? Hours, days, weeks? Has anyone experienced any of the symptoms that the doc told us to watch for while on Xleoda? Are there any foods that will either help with nausea or prevent it from happening?
Looking for any advice as we start the next phase of our journey with CC.
Thanks,
Go with God and KEEP KICKIN’ THAT cancer.Margaret
Lainy, yes I am the official bag lady now. Too funny! I had a good laugh when I read that. But if you had to do it for Teddy, I can do it for Tommy!
Patty, Tom will be slaying the foley cath on Monday (He hates it) but is now resigned to the fact that it is a necessary evil. The worst thing is the Kidney spasms that he is now having. The kidney was so swollen that it’s having some issues as it starts working correctly again. But like I told Tom, he’s climbed the mountain already, this should be a cake walk for him!
Love you guys! Thanks for brightening my day!
Margaret
Kris,
I am laughing at the image of you as a superhero, now what can we call you…
Super Doctor Berater!
Super Doctor Insulter!
Super Patient Defender!
Super Wonder Swede (yes I know you are a Carolina girl but you have to admit it has a nice ring to it)!The only other thing to decide is what color is your cape? I am thinking red!
Patty
Margaret,
I have been away but have caught up to the news on Tom. I hope he slays the Foley in 5 days.
Patty
Margaret, you a bag lady now? I changed all Teddy’s bags! Wouldn’t care to do that again! Hang in there girl, what’s a bag between 2 old bags!!!!
I guess this is where we all join hands and say, “Poo-Poo on the bad pee-pee Doc”…..sorry just couldn’t resist…….lol
Hugs,
PamThanks Gavin and Kris! I did talk to the nurse and found out how to take care of the foley cath and how to change from the day bag to the night bag. And chump sounds like a name for Dr. Somefield who did the procedure. I could think of other not so nice names for him also. I kind of like the “Pee Pee God” statement that Laniy said. When I file my complaint (after the Dr. who THINKS he is a pee pee God takes out the kidney stent and the foley cath) I will be mentioning that he needs to have a wee tiny bit of compassion for patients who are paying his salary because without them he would have nothing. And word of mouth is huge and my mouth will be telling everyone I know about this Dr and advising that if they ever need a Urologist to NOT go to him!
Thanks for listening, again!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret and Tom
Margaret,
I am so angry on your and Toms behalf. Sometimes these doctors better be thankful that I live in Sweden because I could surely go in for some annonymous trouble stirring sometimes.I had a terrible surgeon once. My regular, lovely, amazing one had to go to a conference and I got stuck with this chump. He was about 5 ft 2 in and I am sure he had to stand on a stool to do surgery. Whatever he lacked in height, he did not make up for in bedside manner. He was a real jerk. I did make the nurses laugh when I casually asked “Does Dr. Muller ever smile?” When word got out I made my oncologist laugh (another hard feat) my psychologist said I was ready to tackle Dr. Muller and see if I could sqeeze anything pleasant from him but I replied that I needed the miracle and I would not waste it on him.
Sorry for the ramble. Have you tried talking to the nurse? They actually run the place and are far more patient centered than the doctors.
Hope things improve.
Kris
Hi Margaret,
I am sorry to hear that Tom had another visit to the ER. Yes you are right in that sometimes when it rains it really pours. I hope Tom’s luck changes for the better and that he is feeling a bit better today. And I am also sorry to hear of the attitudes of the doctors, that is not good, jerks indeed! I hope when you speak to Dr Neal that he can explain everything to you both, he sounds much better than that other one!
Positive thoughts and best wishes to you and Tom,
Gavin
Margaret….I am sorry to hear about the not so nice visit at the hospital. You might want to find the nurse assigned to Tom and discuss some of your issues with her. Generally, nurses are a great source of information and have ways to make sure that the patients are kept up to date. (Right, Janet?)
Best wishes,
Marion
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