chrissy23

Chucks as well was overweight, but unlike you has lost all that weight. He went from being 220 to now being about 130lbs. Seems okay but God he doesn’t look that great. Now what I find interesting is that people are so concerned with a healthy appetite yet if it were not for the weight Chucks had to loose, I don’t think he would be here today. People get so worked up on “what they could have done to prevent this” and I say WHO CARES! They told us it was probably due to IBS or Cholitis that Chucks had since a kid.

Patti, what I find most interesting is I think a lot of patients with CC have the same “lazy ass” cancer. Chucks cancer as well when observed with a microscope had something (can’t remember what it was called) that caused his cancer to progress very very slowly. The oncologist was thankful for this when the recurrence came around. He had been sick since he was a child but doctors never found out what he had. They did a liver biopsy when he was 9 and found nothing. Now the Doctors think it could of have the cancer laying dorment for about 20 years. That was the craziest thing I had ever heard.

Either way…… I think food and weight is the way. I am not concerned about what Chucks eats as long as he eats. He body needs the energy, protein and fat to sustain while going through treatment.

Thanks for this post. Something to think about.

Christina

This is really weird. I posted up a topic “good or bad” basically saying how it is so strange that after 4 weeks of chemo (gemzar/tarceva) chucks is feeling better than ever. He is active, eating, walking, feeling pretty good other than tuesdays when he gets the chemo. I was worrying that it meant his body was not reacting to chemo but hearing all this good stuff about everyone else. I feel some relieve. Keep up the good work guys. I think we are making some progress on this sucker!

Christina.

Jeff,

I hope you know that you are an inspiration to me (well, I think to us all) Keep up the great attitude! I love it. Jeff also, I have to agree with Violarob about Tarceva. Our oncologist said that he has been having great results from the combination of gemzar and tarceva. He said he had a patient that he put on these two drugs and her tumors shrunk so fast he couldn’t believe it. Also with very little side effects. Gemzar and Xeloda are first protocal but he only left chucks on Xeloda for a week and a half and then switched him to Tarceva just to show he tried first protocal and say it didn’t work. He said that he really believe in the gemzar+Tarceva. Best of luck Jeff.

Christina

well, chucks br was at 18 when first diagnosed. If the br keeps going up there has to be some type of blockage of the bile. They put stents in and the br came down pretty rapidly. It is a fairly easy procedure. You should ask your doctor why this hasn’t been done or even talked about. Has he developed ascites or edema (swelling in abdomen and legs)?

Christina

Hi Patti,

The articles were very helpful and like we have said all along… new stuff is popping up all of the time. It doesn’t look like the PDT is FDA approved yet. It looks like they are in the process. So that is definitely something we should follow very closely. Thanks for the research. Joyce, Patti is right. Large amounts of protein is very good to have in the body. I just recently went to a health food store and got a powder protein that has 59 grams of protein and is used to build muscle mass. Chucks seems to be doing pretty well with this. Our oncologist said high amounts of protein in the body reduce the risk of blood clots and seems like ppl with this type of cancer are usually very low on protein.

Christina

Sandy,

We as well are currently dealing with a recurrence of this awful disease after a 1 1/2 of (what I call now) bliss. It is hard to deal with and all I can do is try to stay strong and positive. I make sure he eats at least twice a day on top of making sure that he drinks protein shakes to build muscle mass. It is really inexpensive and great source of protein and potassium. Our oncologists said high amounts of protein in the body reduce the risk of blood clots which are can be horrible. In chucks case, he developed a clot in the vena cava too high up to put in a port so he has to stay on blood thinners and could potentially affect his chemo treatment. Has not so far ) so whew) We just completed week four and he is doing better than before chemo. I dont know if this is good or bad. Anyway, I make up a little shake with milk, fruits, vanilla powder protein (sometimes I add some ice cream) and he seems to like it (not a lot but he deals) Best of luck. I will pray for the two of you!

Christina

Yes,

Definitely get a second opinion for your brother and peace of mind. Do as much research as possible. I am currently dealing with a recurrence for my fiance after a long year and a half and I walk in to the oncologists office with my clips board full of questions and research. He says “he knows he always has to be on top of his game when I come in” Make sure they are trying everything and anything possible out there for your brother. Our oncologist told us that there are lots of treatments for cc popping up everyday due to an increase of YOUNG people being diagnosed over the last couple of years. It is a matter of someone holding off long enough to find the right combination. We are trying to find the right combination. Wish you lots of luck. Don’t get down on all the bad! It gets very hard to do at times.

Christina