kris00j
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I am sorry to hear the cancer is back, and you and Tom have to go through this again. Adjuvant therapy is often suggested to try to ensure no new growth igpf there are any rogue cells left. Most surgeons don’t want chemo 3 or more weeks prior to surgery, so that is a question for the doctor.
I think, especially with this cancer, that even with resection, the thought of recurrence is never completely out of mind. But I hope you did, and will, celebrate life after he heals from surgery!I don’t remember getting spots. I would possibly treat them with the lotion, and definitely call the doctor. Are they hot, sore, or itchy?? Do they bother you or are they just red? If they aren’t bothering you, maybe the lotion will be what the areas need.
My hand and feet got red, but nothing els. Hopefully someone will chime in.
How are you doing on Xeloda otherwise?Thanks Percy. Unfortunately, here in the States anyway, PET scans are not acceptable options for cc patients. My previous onc and I had to fight AETNA like crazy to get approval for ONE PET scan!
You have certainly had your hands full! Stress?? I’m sure you have NONE of that! I can’t imagine trying to juggle some of that! I’m glad you were discharged and are feeling better. I know you want to be there for Mark but if you don’t take care of yourself, also, you just might have a recurrence. It sounds like he has a wonderful group around him, letting you listen in. At least that helps.
Take care of yourself so you can take care of him.Pat,
While I fully understand the desire to not poison your body and deal with side effects, I hope you don’t quit looking for something. If your quality of life is overall good, perhaps there is a trial similar to the one I am on. My side effects are acne-like hives on face and scalp. No nausea, no diarrhea, nothing overly hard to deal with. It is meant to keep me stable until something else can be done.
If you choose quality vs quantity of life, no one can fault you for that. Good luck with your journey and please keep us posted.I’ve met Tiff…. Normal?? Haha
Just kidding Tiffany. This is wonderful fantastic great news!! God is great!A fourth year fighter… Here’s praying for many many more!
Have you looked into trials? I’ve been on one for 5 months, and while its not changing, the good news is its not changing!!
Good luck.Heather, I hope this roller coaster came to a stop for a while for you! Wow! What a lot to go through this past week or so. I sure am glad to hear the docs seem to be on top of everything.
I’m sorry I can’t help with the chemo cocktail. Didn’t have any of them.
I did keep oxycodone on hand… Still do… To lessen any pain. I was allowed 15 mg every 6 hours or so, but I took it in 5 mg increments and tried to take only 5 mg at a time.
I’m sure if you talk to them, they will prescribe something for pain. Since morphine/dilauded are narcotics, they might not agree to that. But I’m sure you can get something. Most docs want us to be as comfortable as possible.
Good luck and prayers that this chemo works and surgery gets scheduled SOON.Tiffany, you are a spectacular woman!! I know how alone this stupid disease can make us feel. You have so many people in your corner, and to those that have stepped back, let them. Forgive them, because they don’t understand how it hurts you.
Renee, boo to him for telling you 12-18 months. I think any oncologist who gives us an expiration date should be given huge demerits!
Hi ladylinden,
I’m sorry you had to find us. I’m glad you finally found somewhere to help you. We have a few members that go to MI for treatment. I hope they chime in.
Here is a link to a discussion about folfirinox.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=74477#p74477
Good luck with the study. I hope it works for you!Hi njdaughter.
I’m not able to help you with the spheres, but was wondering where you are being treated, since you are so close to NYC. I was being treated at Sloan Kettering for the first 2 years, but have switched to Fox Chase in Philadelphia for a clinical trial.
I grew up in Summit, so I know the area well.
If your schedule allows, and your father feels up to it, I am trying to start a support group. Since we are widespread, I suggested New Hope. It will be Thurs., Sept. 5. I am sending you an email through the system.
Good luck with information, and prayers for good results for your dad!Shari, sorry to read this.
My suggestions re oxaliplatin: have gloves handy, and sandals will not be appreciated! Socks will help. I used to put gloves on to take my eggs out of the fridge and wait until they warmed up a little before I cooked them.
Room temp drinks are going to become your friend, too.
I’m rooting for you! And Marion, the meaning was the same if not the words. I can’t quite remember what I wrote but if that wasn’t it, it was sure close.
I’m pretty sure we all have meltdowns. Most of mine are for others, and for the unsurety of the future. I allow myself a cry, then mentally pick myself back up.Linda, I hope the new cocktail kicks cc butt!
Make sure terry has gloves ready because touching cold things can burn. And get room temp drinks ready. From everyone I read about, the oxaliplatin beats most cc down quite well, so here’s praying Terry is in that group! And Xeloda works well against lots of the mutations. So between the two, you should have great results!
Necessary things…
Good lotion for hands and feet to keep them from cracking and/or peeling. Don’t be stingy! Two or more times a day.
Warm socks
Gloves
Room temp drinks
