mels803
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Stacie –
I am so so sorry to hear about Mark. I don’t even know what to say. As so many other people have already said, I feel like I knew him through this site and his blog. I am so sorry for your loss.
– Melissa
Joyce –
I’m sorry to hear that your husband’s cancer is back, but I am encouraged to hear that it went away in the first place. How extensive was it to start?
My brother decided to discontinue the Oxaliplatin and is now taking just Avastin and Gemzar. We can hope that it’s the gemzar that’s working, right? I just found out today and am having a really tough time with it. I don’t know how he stays so strong!
– Melissa
Great to hear about the radiation! Good luck with the CT scan. We’ll have to start looking into things like radiation, etc.
Stacie – How is Mark doing? I’ve been reading his blog and things did not sound good. Please let him know that I’m thinking of him all the time. He started with the same diagnosis/prognosis as my brother, just a couple months earlier. I’ve been looking at him as though he’s foretelling my brother’s future…
– Melissa
My little bro’ just went through Gemzar, Oxaliplatin, and Avastin. The side effects are not bad – the only problem that he’s having is with the neuropathy (tingling in the extremities) associated with the platin drugs. Additionally, he’s been on this for 7 months and is now starting to get some nausea after treatment. It lasts for about a day or two and then he is fine for the remaining 12-ish days until his next treatment. I don’t know much about the Xeloda, though. Good luck to you!!!
Thanks for the info. I’m just scared – being taken off of something that’s seemed to work seems like the beginning of the scramble… trying to find something else that may not be as effective…
Stacie – I’ve been following Mark’s blog over the past few months. It’s been helpful to me because it seems as though he and Chris started at exactly the same place – lesions in the liver with some in the omentum, also. Have his doctors said anything about surgery? I think I read that he had an attempt a few months ago? If/when he will become a candidate again? That seems to be the question that no one around me wants to ask.
Thanks again! Happy Thanksgiving.
– Melissa
Hi Lynne and Peter –
My brother is on that clinical trial that you’re speaking of at Dana Farber. (For what it’s worth, it’s also at MGH if you know someone there). Chris has been seeing Dr. Jeff Meyerhardt in the GI oncology group at DF, who has been very compassionate through the entire process. He also apparently is doing something right as Chris just had a 23.8% (but who’s counting?!) reduction in his tumors. Unfortunately, because Chris is so young (25), no one is really that up front about where his tumors are, how large they are, and how much they need to shrink before he will become a surgical candidate. I suspect that Dr. Meyerhardt will be much more up front with you if you want him to be (it just seems that no one in my family really wants to hear the whole story and I am not in a position to pry). Anyway, feel free to contact me at cel10216@suffolk.edu if you’d like more information on Dr. Meyerhardt, Dana Farber or the trial. I will help out to the best of my ability.
– Melissa
Jamie –
My brother is dealing with this and, although I know everyone deals differently, I’ve got to say that he is handling it way better than I ever could have imagined. You read all of the side effects of the drug(s) and think that it’s going to be absolutely terrible, but just know that those are all worst-case scenarios. Chris, my brother, has been able to go back to work and has generally been feeling better now than he did before starting treatment. He lost a lot of weight at first, but we all think that it’s because the fluid in his abdomen has gone down. He’s seemed to level off and at least he now has an appetite (which he did not for a while – a really tough thing for a family of big, Italian eaters!) Just try to take it one day at a time and do know that there is a real possibility that it will not be as bad as you fear.
By the way, the e-mail address that I posted earlier has been disconnected. You can feel free to e-mail me at cel10216@suffolk.edu. (I’m only 28, too… my bro went into the hospital on the night of my law school graduation… it’s so shocking.)
– Melissa
Hi!
I just wanted to say hello and let you know that I really feel for you. My little bro was also diagnosed just about 1.5 months ago with stage 4 CC. He’s oonly 25, so we were all just totally shocked. He’s been having some success with a clinical trial of Gemcitabine, Oxaliplatin and Avastin at Dana Farber in Boston. I can only say that he’s been feeling better – we don’t yet know whether the tumors have shrunk, etc. as he will not be having second CT/PET scans until August. I just have a terribly helpless feeling, as I’m sure you do, as well. Just know that you’re not alone and try to keep your chin up! Please feel free to e-mail me at suffolk06@hotmail.com and I can share with you all that I know, which, admittedly, is not that much.
– Melissa
