I always think these updates must be boring to read. I know they’re necessary, and important. I know this is how most of you get the nitty gritty details on my treatment. Somehow, though, I always wonder if they are actually educational or if they are too technical. So, that’s why I try to limit them to about once a week or when there are changes. My goal is to show you how these decisions get made (in my case only). Some cancers have very specific and formulaic treatment schedules. Metastatic disease often does not. It’s unclear which drug(s) will work and for how long. It’s never known how a patient will tolerate the drug initially and cumulatively as time goes on. The patient has a lot of leeway in many of these cases. There is no blueprint. A good team has communication about options and constantly revises their strategy.
I had this week “off” from chemo. The last few days I’ve felt very good. I have been spending lots of time with our new dog, Lucy, who has brought joy into our home in so many ways. We just adore her.
I was at Sloan Kettering last week and today I met with my local oncologist. Fortunately everyone in agreement after a review of all of the options. One of the things that’s always a concern is quality of life. My doctors are very keen on making sure I am comfortable and able to do things I enjoy. The balancing act of aggressive treatment to extend life without sacrificing too much quality of life is an integral part of treating metastatic cancer. There is no cure. But the goal is holding off the inevitable as long as possible.
I’ve had lingering trouble with the monthly IV bone drug Zometa. Some readers suggested I ask about the other available drug Xgeva, a subcutaneous injection also given once a month. They anecdotally reported fewer side effects. Both of my doctors do not believe Xgeva actually is better for my needs cancer-wise than Zometa, but also agree it’s not worse. One option was to try an IV steroid infusion of Decadron immediately prior to the Zometa to see if it helped with side effects. The other option was to try to the Xgeva and see if I had any side effects from that (most people report fewer to no problems with it, though most also do not have problems with Zometa after the first one or two times). I’ve opted to try the Xgeva. I would usually have gotten it today (28 day interval) but I have plans this weekend that are very important to me. I don’t want to risk being ill and having to cancel. It will not be a problem to get the injection on Monday, so I will postpone it for a few days. We’ll see how I tolerate the Xgeva shot and go from there.
My tumor marker number stayed relatively constant after that small increase two weeks ago. This is good, but leaves us in a bit of a quandary. We aren’t yet at the point of doing a repeat PET scan. The rise is not enough to warrant that, though we will do it soon. Neither is the increase enough to assume the chemo has stopped working after initially being responsive. We don’t know, as I said in the last update, if it’s an anomaly or a trend. The only things that can show us are more data points. I happen to like data points. I like seeing what happens every 2 weeks even if it means more of an emotional rollercoaster. We are only 4 months into this and I don’t feel that we have a handle on how I’m responding yet. Only time can shed light on that. I did have a good initial reaction to the drug which was encouraging.
So… since we’ve achieved a good decrease in the last 4 months with the Xeloda but now that is slowing down and I seem to have “bottomed out” on its efficacy, what now? We want to keep everything where it is. If we can get more of a decrease, that’s the best. If not, we need it to hold steady. We all agree it’s time to try again to increase the chemotherapy dose and see if I can both tolerate it and get a stronger marker response. I started at 8 pills a day in the beginning (for about 2 months) and had to decrease about two months ago to 7 pills a day when side effects became intolerable.
It’s time to walk into the fire again. There is no manual for how to do this. We all brainstorm, we talk about what my goals are, we talk about what makes scientific sense. The idea this time is to increase, but not go back to the 8 pills for the whole round. Instead, to try to get more chemo in my system, I will alternate 7 and 8 pills for the week. We’ll see how I do. Debilitating nausea, stomach pain, hand/foot syndrome, and migraines have been my issues with this drug in the last month.
Also, I will change my start day. Thursday night was my usual. Lately, however, I’ve felt rotten on the weekends (both weekends this time around, as effects often last into day 10 or 11 which technically are “off” days for me). I will now start chemo on Saturday night or Sunday morning and see if we can shift my “rotten days” to weekdays instead. I want more quality days with my family on weekends if I can get it.
This is all educated guesswork, a constant dance of drugs and schedules and side effects and efficacy.
There is no manual.
There is no “must.”
There is only me, floating away, trying to grasp the fingertips of treatment and hope.
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great update, as always. so difficult to know how and when to change course, but you have a great team. also good to know there are alternatives. like you, my dad was also unable to tolerate Zometa (for his multiple myeloma). in addition to the flu-like symptoms, he had cumulative effects – jaw pain, quickly advancing cataracts and issues with eye pressure. he’s switched to Aredia with good success. Aredia is a 2-hour infusion, instead of the quick 20 mins for Zometa. worth it to not have to also worry about mounting eye issues. keep on keeping on, friend. xo
Lisa, this post helped me. Gearing up to support a family member about to go through breast cancer treatment again. I’ll understand much more this time around. Thank you for making the time to write these posts. xo
Your posts are helpful and interesting. Thanks for sharing your thought process and feelings. Have a wonderful weekend.
Your writing is so beautiful, I sometimes feel lost in it, drawn in, and I am always in awe of your honesty and generosity in sharing. Again, thank you.
I am grateful that you arewillingto share your journey. Thank you!
I appreciate the updates.
Your updates are never boring. I hang on to every word and hope that the chemo is nudging you in the right direction. I’m glad you have such an amazing medical team and I’m really glad that Lucy has brought so much joy to your and your family.
As always, I’m pulling for you.
Sue
xxx
I look forward to your updates and when you are quiet I worry about you. I haven’t been on Twitter lately so this is really the only place I’m getting your news. Good for you for shifting your medications to give you better weekends. I hope this gives you more quality time with your husband and children. Enjoy whatever wonderful plans you have this weekend!
I am on monthly Aredia since March 2012, and never had any side effects. Hope XGeva works for you. Have a nice weekend. Suzanne
Thank you for sharing your journey.I also hang on every word. You express yourself so beautifully. I reread the last line many times. It is profound to me, as is so much of what you say. You help me too.
Kim
this is the art of war fare–and your updates couldn’t possible be boring, because you’re an extraordinary writer and thinker. You are bringing back news from the front lines with a lot of wisdom and insight. we are with you in spirit every step of the way.
Thank you for your efforts in writing this post. I appreciate your honesty. I wish I could give you a hug.
Your posts are not boring, nor too technical. Lucy sounds wonderful; I’m glad she is bringing such joy to your family. Good luck with the new drug and schedule. Enjoy your weekend plans.
Sometimes I wonder why I ever subscribed. Your posts scare me, sadden me, anger me. This could never be boring, Lisa. You write so clearly and honestly that you bring us in… whether we want to be there or not. From the comments above, you must know that your writing helps all of us. Like you, I have resisted anyone even breathing the words “cancer-free” near my maybe-still-diseased body. You have shown me monster under the bed, and it’s worse than I could have imagined. And yet… I need to know. Thank you for doing it the way you do: without making it precious and life-affirming or the stuff of martyrs. It is horrifying, and yet there is hope… and so I can’t stop reading.
Regarding your elegant balance between straight talk and medical-ese, you are doing a bang up job there. I was a surgeon. My husband does DIEP flaps for a living. We already lived and breathed this crap. Having been on both sides, I think your explanations straddle both worlds beautifully.
xoxo
Lisa I love updates. I am always curious about every detail and what options are available to you. I know with treatment there is so much unknown and I hope the xgeva works much better for you and they are finding the right levels for the xeloda to work without having bad hand-foot issues as well as all of the other side effects that can happen. Hopefully changing the days up will help. Most important I hope that you enjoy the weekend being off the Zometa and I will think positive thought for the xgeva. Thank you for being so real and sharing your journey with us. Details count and it’s always helpful where others can tell you what they experienced with meds and you share what effects they have on you. I send you hugs and XoXoXo- Susan
I hope this new protocol brings you some relief. You are my mentor in all of this and it helps me in my own treatment to observe how you navigate yours! O Captain, My Captain!
Lisa, as you say, cancer is not a gift – but your gift is your ability to write and express your experience with such clarity and such emotional insight. It is 3 years since my cancer experience and it is only in ‘survivor’ mode that I have become acquainted with the blogosphere. The support it can give to people is amazing – such a phenomenon of the modern age – how isolated people must have felt pre-internet. Like everyone else, I am keen to know of your technical updates as well as progress and experience on other fronts.
Your posts are not boring or too technical for me. If I need to look something up, I look it up. You are providing, sadly, a first hand education in your posts. I wish you good luck with the new chemo dosing and schedule and that you remain as comfortably as you can possibly be. Every update is important and I thank you for writing them.