croberts20

Thank everyone for the welcome.
Jason – It sounds like we are a week behind you. We just missed you in Houston:). I will be very interested to find out what they say at Mayo. Did it take long to get an apt? I just filled out the apt form on line yesterday. If you don’t mind sharing what they say it would be so helpful.
As I said before we see a surgeon and internal radiation team this week. I know that Travis is not a candidate right now, but we are praying as you are too I am sure that the cancer reacts positively to the chemo. Maybe some day he will be candidate for resection. I have read quite a few posts so I don’t remember if you have symptoms or what brought you in to find the cancer. Travis was kidney stone pain which he has had many times in his life. I only wish that he had a kidney stone 6 months or 1 yr ago so we could have caught this before it spread. Can’t look back, but it’s hard not to think that way. Anyway, I hope that maybe you get some helpful info at Mayo. Let us know what they say.
Thanks,
Carrie

Thank you so much for your reply. We saw Dr Shroff at MDA. She agreed with our local oncologist who we love about the chemo treatments. Or local guy is a 42 yr old oncologist out of UNC who is full of piss and vinegar, just what we wanted. Our dr and Dr Shroff both recommended Gem/Cis. MDA recommended that we do the chemo here in ATL and she was willing to work with our Oncologist. She recommended the treatment to be every 14 days instead of the 2 weeks on/1 week off. Travis has 8 tumors in his liver. 1 main (7.6cm) and 7 small satellites. Then he has cancer in his lymph nodes in his abdominal wall, chest, and pelvis.

Glad to know about the Rochester Mayo. Do you think that we will get any new info there? We will most likely have to pay out of pocket for that opinion. We will gladly do so, but as I read the blog it looks like the treatments esp at first don’t vary much so I hate to pay to have someone else tell us to do Gem/Cis. We are meeting with a surgeon on Tuesday at Piedmont hospital as well as an interventional radiologist. We know that Travis is not a candidate for surgery right now, but we have this doctor who believes in Travis and he wants the surgeons to know us. We have heard fabulous things about the surgeons at Piedmont and the internal rad guys. Over the phone they told Travis that they are going to look at him as a 38 yr old father of 3 and not a statistic. We are happy with our care here in ATL, but we just keep wondering if there is something out there that we might be missing. I look at the clinical trials.org, but I have to admit I have a hard time knowing what it what. This is all so new to us.

Travis is totally symptom free. He went in to the ER for kidney stone pain and they found the liver tumor and the large lymph nodes. The kidney stone pain is gone and he has no other pain except that he says he can occasionally feel the tumor. No pain but rather awareness.

Have you ever seen chemo get the cancer out of the nodes? Also they told us that his CA19-9 levels were at 91,000???? Have you ever heard of that? We asked if it was a typo and they said no. So crazy!

Thank you to anyone for their advice! I am pouring over everyones entries and trying to learn from other peoples experiences. It is nice to see others out there like us.

Travis’s story is at http://www.concretefaith.org.