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Diane,
I had my AFP measured once, prior to diagnosis when I was told I had an unknown liver tumor. It was normal and no one has checked it since. It doesn’t seem to be very popular in cc patients. Congrats on the clean scan!!!
Susie
Hi Cindy,
Welcome to the site and sorry you had to find us. This site has been so helpful to me. When I was first diagnosed, I wanted to find others like me.
I was 31 when I was diagnosed with intrahepatic CC. I was very healthy.
I had one large tumor and was able to have a resection. I also got chemo radiation and chemo after the resection.
Best of luck with your treatment and please keep us posted.-Susie
Holly,
Welcome to the site and sorry you had to join us. Many people on this site get second opinions. I got three opinions on my treatment.
Best of luck with chemo and keep us posted!-Susie
So sorry Pam. What a scary experience!
Maybe they can premedicate her prior to infusion?? I would think with a reaction that bad they may either have to try to desensitize her or switch agents. Let us know what they decide.
I wonder if she gets a break if the next infusion would be as bad??
That’s so weird that people become allergic to chemo. Common sense leads you to believe if you make it through the first dose, you’re not allergic, but I guess that is obviously not the case.
Give our best to Lauren.Susie
Hi Bruce.
I had intrahepatic cc with my tumor removed 1 1/2 years ago. I was R0, negative lymph nodes and clean margin, though one margin was close.
I got 3 cycles gem/cis, 6 wks chemo radiation with Xeloda, 3 more cycles gem/cis.
I went to 3 different hospitals for opinions on the radiation.
University of Pittsburgh said chemo only, nothing to radiate. (this is where I had my surgery)
Oregon Health and Science at first said only chemo radiation but then went to tumor board and said chemo + chemo radiation. (this is where I live and got the chemo and radiation)
Mayo said chemo and they are not currently recommending radiation for R0 patients, but they are not necessarily opposed to it and if I wanted to proceed with it, they understood because of the close margin. ( I just went there for another opinion)
Mayo was able to provide me with one study where radiation showed some benefit and another study where it showed no benefit.
I think it is a personal choice. There is not much data to show any benefit and no benefit was promised to me.
But, the other thing to consider is there are not many R0 patients even out there to study.
I was 31 at diagnosis and otherwise healthy, so I was all for getting as much adjuvant therapy as they would give me.
It is a difficult decision and I wish you the best.
If you have any questions about my radiation experience, please feel free to ask.
Maybe another opinion will help you make the decision?take care,
SusieHow wonderful you have such caring people in your lives!! I know it is hard to accept help from others, but I think it is also hard for our loved ones to feel like they can’t help us.
Take care!
SusieLeeAnn,
My tumor marker went up a little while I was on chemo. I went even higher with radiation. I think it has a lot to do with inflammation in the body and is not always indicative of cancer progression.
It still worried me when it went up, so I know how you feel.Take care,
Susie
Welcome to the site. I’m very sorry your family is going through this. You will get a lot of support and helpful advise from this site. Everyone is so kind.
Please keep us updated.-Susie
That’s great, Pam. Shrinkage is great! Sorry Lauren was disappointed, but am glad she is happy now.
I’m sorry to hear her feet are bothering her. My Xeloda kit came with udder lotion. I’m not sure if that is the best lotion out there. Hopefully, the lower dose will give her some relief.
So glad to hear the good news and so glad you got results quickly.
I never mind getting the scan, but it’s the night after the scan and before the results that makes me crazy.Be well!
Susie
I am doing well. I think of you and Lauren all the time.
