mucinous adenocarcinoma of the Appendix- Stage 1V

bdee said:

Mucinous adenocarcinoma of the Appendix
If you find or are told something else that will help, please e-mail me because after only seven months my doctor has already told me there is nothing else to do but give me 5FU and Avastin for the next couple of years to help keep the tumors under control, but not to eliminate them.
My rare side affect came with the oxy. I couldn't eat anything solid for three months because I couldn't swallow anything but liquids. And, as you know, I couldn't do anything cold. Hot or warm Ensure was gross, so I just sipped hot tea and hot broth for about a month until the oxy was out of my system and then I could drink smoothies with protein powder to help me. I lost 65 pounds all together in those three months, but 10 of that was the mucus they removed at the time of my surgery.
I haven't been to one of the better cancer centers, but have talked to several cancer doctors at the University of Arkansas for Medical Sciences here in Little Rock and they all tell me the same thing. No cure for this kind of cancer, yet, but they all want to start me on some kind of clinical trial. My oncologist tells me the clinical trials are just that, trials, not a cure and maybe not enough to prolong my life any longer than what he is doing. Sometimes I don't know who to believe.

Good luck and please let me know anything you find out,
Debbie

bdee
Unfortnately this is a wait and watch regimen that both you and my husband are on. I see that you were diagnosed in Jan.09 stg.1V. Husband was diagnosed Nov.07 stg.1V. Our local hospital said it would be a matter of days and that he should get his affairs in order. I immediately packed him up and took him to Stanford University Cancer Center,they saved his life!!!
He has had a ileostomy, debulking surgery { removed 7 lbs. of mucinous tumors, spleen, right hemicolectomy, sections of small intestine, e.t.c }, ileostomy reversal. Lost 60 lbs. and all his muscle mass. Did not do internal heated chemo. Unfortunately, the only clear evidence of that working is when it is caught early, which rarely is the case.
It is good that you can tolerate the 5fu with Avastin,that is the same regimen they put husband on, unfortunately he had bad reaction so that is not a option. We will be consulting with Dr. on 25th, they have also mentioned clinical trial. We of course will probably go that route if their is nothing else, but first I think we are going to take a short chemo holiday to give his body a rest.
They recently ran a test on his tumor sample and found that it is positive for the KRAS Mutation [ has your Dr. said anything about this in your case? ] That will make a difference apparently on the drug that can be used.

Like I said he was given days that turned to years and I suspect he has many more to go. So make sure between the watch and waits that you continue to do the things you love, as much as you are able. I suspect that you and my husband will be around for a long time. It sounds like you have a good Dr. who is on top of the latest treatment for this rare disease. I will let you know what information we get from the consult on the 25th.