kris00j
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Holly:
I am so glad to hear your news!! No advice here but I am sending loads and loads of well wishes your way!My experience with Xeloda is that it works on some mutations of this disease, but the platin drugs worked better on both forms in my body.
The platin drugs made me more sick, but I have to say Xeloda also made my handstand feet very red and they burned. I kept them lotioned 2-3x a day to try to keep the peeling away, but the feet finally did start to peel AFTER I was done treatment. Unfortunately, I have no experience with 5FU.
Wish your mom the best and my thoughts and prayers are with you.I hope your mom starts to feel better soon. I wonder if the fluid might be bile? I had a “sac” of bile last year. But because I was otherwise healthy my surgeon wanted to see if it would go away on its own once my infection was taken care of and it did. I hope the drainage goes well for her and they can come up with a plan. I’m so glad she got transferred.
My thoughts and prayers go out to you.I’ve decided I want to be the poster woman for those of us that are “incurable”. I want to be one of those they find the cure with. Maybe I’ve got a shot!!
Hi Jennifer
I was on gem/ox and had sensitivity to cold. I wore gloves in the supermarket or any time I went into the fridge or freezer. Warm socks are a blessing!
I did not lose my hair nor was the neuropathy lasting in the hands and mouth. Like Lauren I drank room temp or warm drinks, which I prefer anyway except on a really hot day.
The neuropathy in my feet got pretty bad. It’s a bothersome tingling/burning/asleep/numb kind of feeling and unfortunately it didn’t go away after only about 6 treatments so we had to stop. Over the course of the past year I have gotten most of the feeling back, except for my toes. They are kind of perpetually asleep. Not trying to alarm you: it doesn’t really hurt. More like the pins and needes when your foot is asleep times 2 or 3.
Just make sure you have gloves, a scarf and nice thick boots handy just in case.
I’m sending good thoughts and prayers out for your mom.Lainy, that’s a good one. I have honestly never heard that!! And I do get the disability discount now so it’s half price.
BTW, thanks everyone for all your support. I don’t know how I would have made it through the past 2 years without you!Results are tomorrow.
I know, I’m worrying about nothing…… She’s gonna walk in and say everything looks quiet and I will have my 8 seconds with her…. Then treatment in the pump and tears of relief and the train home!!Ibutiong:
My first treatments were gem/oxy. The oxy caused neuropathy but worked VERY well on the tumor. I had 6 treatments before my body couldnt handle the oxy anymore and they had to stop and the tumor was less than half the size. The (at the time) questionable lymph nodes appeared perfectly normal.
There are people on this board who have had complete cycles of oxy and had good results, with little to no side effects. Unfortunately, we cannot know ahead of time which way things will go.
My hopes and prayers are that each of us lives long enough to benefit from a medical breakthrough (which I believe is coming)!!!
Good luck to your mom and may she enjoy little to no side effects. Make sure she has mittens, thick socks and a scarf just in case.Pam
I am so happy to hear this! I have been holding my breath waiting! So happy she can go on her vacation with good news behind her.
Hugs and love,
Kris
