Nuggets of wisdom, three years into treatment
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Lisa:
What name for the caringbridge.org site? My husband Tom has a caringbrige site under thomaslepp. I’ll check your’s out if you post the name.
Thanks,
MargaretHi Gettingby
Thanks for taking the problem to share your “Nuggets of wisdom”…I’m taking chemo at present (Gemzar and Oxaliplatin) and have that horrible matallic taste (not nice). I’ll try the pineapple.Gerry
Hi Gettingby,
Welcome to the site and thank you for sharing your thoughts with us all. I guess that the wisdom that we have all gained regarding CC has indeed been done the hard way! As to the depression, my dad was given prozac when he was in hospital after his diagnosis, he spent the best part of 7 weeks in the hospital and about 3 weeks was spent in a room on his own. His treatment was PDT and that meant that his skin was extremely sensitive to light after the treatment so he could only leave the room if all the lights on the ward were out.
And yes, having close friends around a lot always helps lift someones mood, as does having some good laughs with friends.
My best wishes to you,
Gavin
gettingby….thanks for sharing your experiences with us. It is so very much welcome. I love the idea of the fruit basket. Being that February also is Cholangiocarcinoma month, you might want to include our brochure.
Best wishes,
MarionGettingby:
Thanks for the advice on the Pineapple juice – my husband Tom has CC and is starting on Xleoda tomorrow! I’m going to the store in the morning to buy some pineapple juice for him!
Margaret
My husband was diagnosed with CC at stage four, just over three years ago. Some wisdom we’ve acquired the hard way:
When you get an external stent, the bigger the french size, the better. It gets clogged less easily. Drainage Depot (I kid you not) has the best bags, but most hospitals don’t carry them. We mail order them directly.
Dilaudid is the pain med of choice. About 5% of patients get biliary spasms from morphine and its derivatives. We don’t need biliary spasms!
CT scans haven’t been useful for imaging. MRIs with contrast seem to work better for us. The contrast agent used by Mayo works well — but I can’t think what the name is. Sorry.
Depression is normal. Having friends come to visit, frequently if briefly, is essential. Email is a great link to the world, but telephones are better, and in-person is best.
Pineapple juice can ease the metallic taste that Xeloda leaves in your mouth.
An early-warning sign of biliary blockage is that all odors, even from your favorite food, smell bad and make you a bit queasy.
February is a great time of year to bring a fruit basket with you to your chemotherapy appointment. It makes the nurses happy, and they’ll be all the nicer to you when you’re having a cranky day.
I hope these thoughts are useful.
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