I have felt pretty good the past five days or so (knock on wood), with no real problems other than the constant nosebleeds (a side effect of the chemo drug Avastin). But in the past couple of days my bone pain has increased, probably because I took an extra third week off from chemo to enjoy my family's time together for Christmas and New Year's (which I did enjoy and don't regret at all). I have chemo again this Tuesday, so I will be wearing the chemo pump until Thursday, and I hope that will knock the cancer back a bit. Otherwise I might need to increase my pain medication from the current 25-microgram Fentanyl patch. At this point I feel like I can tell where the cancer is at from the bone pain, without even needing the CEA numbers or PET scans. I am getting resigned to the fact that I am probably not going to have any long periods of remission, unless some other treatment regimen works much better than this one. The cancer I have seems to spread pretty aggressively soon after stopping treatment. Once the FOLFIRI chemo drug combination stops working, which I'm told it will eventually as the cancer adapts, the next step will probably be a chemo cocktail called FOLFOX, which is basically the same with one drug substitution: oxaliplatin for irinotecan. Those are basically the only treatment options for metastatic colon cancer (there is another one, but it's not expected to work for me because I am apparently a KRAS genetic mutant), unlike some other cancers such as breast cancer which get more attention and have more treatment options (I got a glimpse of the unfortunate politics of cancer research when my Seattle oncologist was discussing his frustration with the difficulty of getting attention for colorectal cancer - as one of my friends said: "Who wants to wear a brown ribbon?"). After FOLFIRI and FOLFOX, I am looking into some clinical trials of newer experimental treatments, with the help of Dr. Mark Renneker in San Francisco (referred to me by Jonathan and Sarah). The problem with most of those is that they would require me to travel to a research site in some other part of the country, and I don't really want to spend a lot of my limited remaining time in Evanston, Illinois or some other random place far from family and my sons in particular.
Speaking of Jonathan and Sarah and travel, I am planning to fly down to San Francisco with Seth this Friday through Monday (January 7-10) and stay with Jonathan and Sarah. Seth asked me if we could visit them and their sons Toby and Jacob and this is our only chance before his basketball season at the YMCA begins the following weekend (I will be co-coaching his team again with my friend Michael Parke, whose son Will will also be on the team). I am really hoping that I will feel OK after the chemo this week; I would hate to have to cancel this trip on short notice. We'll see.
In general, I really hope I will tolerate the chemo and any other subsequent treatments reasonably well, because I have a goal to return to work in the spring quarter, which begins in late March. My main worry is fatigue, which has been manageable lately but which may get worse over time as the chemo toxicity accumulates in the body.
Ethan
FOLFOX was the first round treatment for my husband Jeff, who had metastatic colorectal cancer also, as I have probably mentioned..... We had a good summer in 2009 because of the FOLFOX treatment working so well. It is frustrating: so many young people with excellent diets and habits get this cancer, and yet people are always asking me how many hamburgers he ate, like getting cancer was his own fault. I guess it's peoples' own wish for a good luck charm: if I do or don't do A,B,or C I will be safe. Nope.
ReplyDeletexo Carrie S.
Ugh. No. It was 2008 that was the good summer.
ReplyDeleteJeff's main side effect of FOLFOX was that the oxaliplatin eventually caused neuropathy which got worse over time, after a few months. Cold numb fingers, and he couldn't eat or drink cold stuff. However, he still played his guitar as much as he could. I just had to button his shirts.
Yeah, the neuropathy side effect of FOLFOX is the main reason that I've done FORFIRI as my first-round treatment instead. Some of my greatest pleasures these days are playing basketball and getting a cold smoothie afterward, and neuropathy would interfere with both. If I couldn't play basketball anymore that would be a big loss for my quality of life.
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