A month ago, we weren’t sure whether I would live or die. Tied to IV and oxygen lines in a dreary hospital room, I listened as Dr. Hammers proposed an emergency chemotherapy round to possibly buy me a couple of weeks as a “bridge” until the Cabo surfaced on the market. Even the Cabo – considering my luck with previous treatment regimens – seemed a long shot. Today I’m moving freely about the house on my own, facing new challenges of returning to a more normal routine. A month ago simply walking up the stairs was enough exertion to force me to sit down and catch my breath – often requiring oxygen. Today I’m running up and down the stairs all day long. I hadn’t driven in months. In fact, Dena has stolen my car and left me with the minivan. Yeah, as if facing mortality weren’t enough … but a minvan? Yesterday, I got dressed and drove down to the local coffee shop. Admittedly, still in the minivan … but we’re making progress. Today I went out to a long lunch with a friend. I do not need oxygen now, at any time. I can sleep through the night, and I have energy through the day. When I breathe deeply, I don’t feel my lungs crush in on me. I can hold conversations without breaking down in coughing jags. I don’t vomit every morning. I’m not losing weight; indeed, I’m gaining weight, having put on nearly ten pounds since the first of January. I’m not going to pretend that my health is strong yet, not yet –but it’s getting stronger each week and is, I believe, on a steadily upward trajectory........
For the first time in a long while I’m anxious about getting a CT scan. I’ve received disappointing scan results for so long that at some point I quit worrying about them. Now, I worry again. Will the next scan confirm what I’m feeling physically? Will it showed continued results? I haven’t worried in a long time, and it feels good to have even the simple opportunity to worry. It means there’s hope – which, a month or so ago, was faint. Today, it is everywhere. It is a reminder: Never give up, never lose faith....
It's a joy to hear that this patient has gotten some hope from this drug. It's unclear what the dosing is but it sounds manageable:
"Cabo is supposed to be a pretty toxic drug, but I have managed the side effects well. Fatigue was especially strong for a while but it has lessened as my body has adapted to the drug. Nausea hits pretty hard in the mornings after I first awake, but Zofran and Compazine usually work well enough and it fades by late morning. I get some skullrattling headaches on occasion, and there’s some hand-foot syndrome challenges similar to what I had with Sutent and Inlyta. All in all, though, the side effects have not been too bad."
This is an important example of off-label usage in the field. Any patients who are connected to networks and communities will have seen this post as well, and hopefully have some hope restored and a chance to live for atleast a few more months.
here are the few comments:
Chris, Dena, Kate and Josie. No soul can read your post and not have tears of joy instantly spring to his/her eyes. It has been far too long since you were able to post positive news; you had us worried, there, kidney-onc friends! The news of your favorable response to Cabo has brought tears of joy - unbridled, hope-filled, Easter-season-type joy - to all four corners of the globe. May your scans show shrinkage (of the mets, not body parts) and may you be able to celebrate the glorious spring that the D.C. area enjoys in ever-improving health, with your three girls dancing in the sunlight under the cherry blossoms! Continued great progress towards good health! All of the members of the Battle family provide hope and inspiration to folks who are sometimes short on both. Many, many thanks from a grateful "nation" of mRCC folks.......
Yes it will Chris! I'm a very strong believer in Cabozantinib...and I believe it will become a real blockbuster drug like Sutent was when it hit the market.
This is a huge 180 degree departure from the 'hope for the best, but expect the worst' mindset that we've always have had with Tina prior to her re-staging scans.
I know I can't see you or really know what kind of shape you are in but my gut feeling is that you are getting a real partial response. And I don't mean a mixed response where some shrink and some grow - none of that nonsense! Straight across the board response!
I'm even willing to put money on it if anyone wants to take the other side of my bet!!!