christine1015
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I think we are going to explore the immunotherapy route before any more chemo. I stopped responding to Gem/Oxa and had no response on Xeloda so I am not optimistic that other chemo treatments will work.
Thanks all!
Christine
I had mine tested at MSKCC too and they did not detect any mutations either! My Onc said that was very unusual but I am not really sure what it means. I think it just means the targeted gene therapies won’t work for me.
I haven’t been on here in awhile. Sometimes I stay away so I don’t have to think about things too much
I haven’t had another scan since September. I will have one right after Thanksgiving. My blood work shows the tumor markers on the rise though so that’s depressing. My AFP was always in the 90s and it was close to 300 on Wednesday.
Someone asked about genetic testing on the tumor. MSKCC did that and found nothing!!! They told me that was really unusual and they ordered more tests on it. Not sure what that could mean
I know I still have a lot of fight left in me. . . . its just harder some days than others.
Thanks for the thoughts everyone!
Christine
Susan –
I sent you a forum email with my email address but not really sure how that works. You can email me at christine.eoliver@gmail.com!
Thanks!
I am in the same trial as Susan and agree with her comments. I have only had one cycle of the Oxi and the cold sensitivity did start right away. It went away about 4-5 days later. I just drank room temperature beverages and wore gloves to get things out of the freezer. The air conditioning didn’t seem to bother me and its 95 in Ohio right now so we have it blasting!!
Good luck!
Christine
I just saw this post. I am in the trial at MSKCC too!! Would love to chat with others on it! I just got back from NYC last night as I live in Cincinnati.
I just had the pump inserted a month ago and have only had one round of the FDUR and the Gem/Oxi. I was supposed to have the next round yesterday and my liver function was already too low to get it. I was only able to get the Gem
. I am so frustrated.Glad to find a few others going through this too!
Christine
I just got back from MSKCC and they want me to use this pump as well. I couldn’t find many people on here posting about it.
My doctor in Cincinnati doesn’t think the pump is necessary. He thinks I should just do IV chemo followed by surgery.
Any thoughts on how to research who is right?
Thanks!
Dennis
Thanks for the response. Did you work with anyone in Cincinnati? I have been seeing a doctor at UC who seems pretty good. He has dealt with this before and seems confident he can handle the surgery. We are still getting the second opinion at MSKCC. The thought of having surgery in NYC is a bit daunting but if that’s the best option that’s what I will do.
Thanks!
