Today's infusion was uneventful. Hopkins and Kaiser got all their ducks in a row, and my labs that Kaiser did on Tuesday expedited the release of my drug today. To my pleasant surprise, I did not develop a rash after my 27th infusion two weeks ago. I kept waiting for those itchy nodules to appear. I didn't feel sad that the angel of rash passed me by. Or maybe I got a placebo infusion instead. Like most things in life, I'll wait and see what happens next.
During my meeting with Dr. Hahn, he told me to expect publication of the interim results from this trial in connection with the ASCO meeting. Dr. Hahn could not promise whether that data would provide much guidance to me, however, since I am in the leading edge group of people getting nivolumab for mets bladder cancer. But he said that we could look at data from other nivolumab studies with other cancers, as well as data from other immunotherapy drugs, and extrapolate from that. He'll be there to help me along. Since there will be a lot more information available in the next few months, I'll be patiently drumming my fingers until then.
<drum, drum>
Meanwhile, spring is springing in the mid-Atlantic, and I'm enjoying the warmer weather. I've been busy coordinating the finishing of our lake house, and collecting furnishings both so we can use it and to help it sell. In case it does not sell quickly, we're going to make as much use of it as we can.
<drum, drum>
Jennifer and I continue to noodle over future plans. The whole idea of making long term plans still feels a bit strange to me, kind of like we're tempting fate. But like Simba, I walk on the wild side. I laugh in the face of danger. So I have started to plan, and God laughs. Nevertheless, Jennifer and I have decided in principle to simplify and downsize as our nest empties. We have not yet settled on how we'll do that, or when, or where we'd go. There's no rush, however: As long as I'm in this clinical trial, it makes little sense to move. I expect we'll be here for at least the next year or so.
For the next few months, we have enough on our plate: getting the lake house on the market; a family gathering in Florida in April; Jennifer's graduation from her MSW program in May; Garrett's graduation from high school in June and his likely departure on a mission in July; and Chelsea giving birth to our first grandson in August. That should keep us occupied for a while.
<drum, drum>
Thursday, March 24, 2016
Thursday, March 10, 2016
CR 262: 27th infusion, rash decisions
After my 26th infusion two weeks ago, I had a new rash develop around my neck and upper chest. It was not as dense as the rash around my calves that developed after infusion #25, but it still itched. It was like I had 50 mosquito bites around my neck. I applied a topical corticosteroid and took Benadryl every 4-6 hours and muddled through. I think it's strange how my immune system is reacting in different ways to the same doses of nivolumab. Dr. Hahn said that I should continue to do what I had been doing, and if the next rash advanced to a grade 2, he'd probably add a steroid into my next infusion.
Effective March 1, I joined Kaiser Permanente's Medicare Advantage plan and met with three doctors in three days, all of whom promised to coordinate with Hopkins and ease the logistical burden. On Tuesday I had my lab work done at Kaiser's Tyson's Corner facility, and it was faster than Labcorp. I found out today, however, that Kaiser did not report the lymphocyte percentages, which is a required data point before the pharmacy will compound my nivolumab. That caused a delay in getting my infusion. Another delay was caused by my port not giving a consistent blood return, so I ended up having an IV while my port was flushed with drano or whatever they use to dissolve blood clots. I expected some transitional hiccups so I'm just rolling with it.
Dr. Hahn and I discussed the newer data regarding nivolumab durability. In his position as chair of the ASCO immunotherapy review committeee, he's starting to see some of the recent reports. He couldn't give me any details yet since he does not have all the data and what he does have has not been cleared for publication, but he said that it shows that nivolumab is working in a significant number of patients. He said that other immunotherapy drugs were also showing great promise. The data should be released in a month or so.
Dr. Hahn said that some of the future considerations for immunotherapy include what options there are if one type of immunotherapy fails: can patients try a different drug? Should they consider combination therapy, and if so, with what drugs? Many different combination therapies are bring evaluated in trials, but it will be some time before there are good phase III trials comparing different combination therapies. That discussion reminded me of how oncologists are not expecting immunotherapies to be curative, but are instead being used to prolong the lives of mets cancer patients.
I asked Dr. Hahn if there was anything I could hang my hat on regarding my own expectations. I noted that, prior to last summer's announcement of my complete response, I had been planning my life in no more than 3 months chunks, living day to day and planning from scan to scan. Could I now begin to think that I might have a more normal life, I asked? Dr. Hahn shrugged and said there was no way to know. The data simply was not available to form a basis for any predictions. He could not say if I might have years of life with no evidence of disease, or if my mets might come rushing back without warning. Likewise, there was insufficient data to say whether any disease progression might be slow, or as sudden as falling off a cliff.
I noted how I was now retired, that my nest might be empty by the end of this year, and that Jennifer and I have been talking about our options. That discussion was made difficult by not having any basis to assume how long I might live. Dr. Hahn apologized for the lack of data and empathized with the difficulty in making decisions with an uncertain horizon. As of now, there's not a whole lot of insight he could add. At least he didn't say that I shouldn't buy green bananas.
For now, Jennifer and I have set the following goals for the next few months: a family gathering in Florida next month; Jennifer's MSW graduation in May; Garrett's graduation from high school in June and his likely departure in July on a two year mission for our church; a trip to Utah in August for the birth of our third grandchild. In all the spare time I'll be doing my long-ignored honey-do list We only have vague ideas of what we'll do in the fall. Maybe a few trips here and there, but nothing too long since I want to continue with my clinical trial through February of 2017, assuming all continues to go well.
This spring we also intend to put our lake house on the market. It was badly damaged last spring due to a broken pipe, and the entire interior was gutted and rebuilt. We bought it near the top of the market in 2005, and I'm just hoping to break even on it. We want down there on Tuesday to check it out and also get our boat out of the shop. I blew the engine last fall and after some dithering decided to have a new motor installed. It was a beautiful spring day in the 80s and we spent the afternoon on the water. It was a relaxing day, and reminded me of how grateful I am for each day.
Effective March 1, I joined Kaiser Permanente's Medicare Advantage plan and met with three doctors in three days, all of whom promised to coordinate with Hopkins and ease the logistical burden. On Tuesday I had my lab work done at Kaiser's Tyson's Corner facility, and it was faster than Labcorp. I found out today, however, that Kaiser did not report the lymphocyte percentages, which is a required data point before the pharmacy will compound my nivolumab. That caused a delay in getting my infusion. Another delay was caused by my port not giving a consistent blood return, so I ended up having an IV while my port was flushed with drano or whatever they use to dissolve blood clots. I expected some transitional hiccups so I'm just rolling with it.
Dr. Hahn and I discussed the newer data regarding nivolumab durability. In his position as chair of the ASCO immunotherapy review committeee, he's starting to see some of the recent reports. He couldn't give me any details yet since he does not have all the data and what he does have has not been cleared for publication, but he said that it shows that nivolumab is working in a significant number of patients. He said that other immunotherapy drugs were also showing great promise. The data should be released in a month or so.
Dr. Hahn said that some of the future considerations for immunotherapy include what options there are if one type of immunotherapy fails: can patients try a different drug? Should they consider combination therapy, and if so, with what drugs? Many different combination therapies are bring evaluated in trials, but it will be some time before there are good phase III trials comparing different combination therapies. That discussion reminded me of how oncologists are not expecting immunotherapies to be curative, but are instead being used to prolong the lives of mets cancer patients.
I asked Dr. Hahn if there was anything I could hang my hat on regarding my own expectations. I noted that, prior to last summer's announcement of my complete response, I had been planning my life in no more than 3 months chunks, living day to day and planning from scan to scan. Could I now begin to think that I might have a more normal life, I asked? Dr. Hahn shrugged and said there was no way to know. The data simply was not available to form a basis for any predictions. He could not say if I might have years of life with no evidence of disease, or if my mets might come rushing back without warning. Likewise, there was insufficient data to say whether any disease progression might be slow, or as sudden as falling off a cliff.
I noted how I was now retired, that my nest might be empty by the end of this year, and that Jennifer and I have been talking about our options. That discussion was made difficult by not having any basis to assume how long I might live. Dr. Hahn apologized for the lack of data and empathized with the difficulty in making decisions with an uncertain horizon. As of now, there's not a whole lot of insight he could add. At least he didn't say that I shouldn't buy green bananas.
For now, Jennifer and I have set the following goals for the next few months: a family gathering in Florida next month; Jennifer's MSW graduation in May; Garrett's graduation from high school in June and his likely departure in July on a two year mission for our church; a trip to Utah in August for the birth of our third grandchild. In all the spare time I'll be doing my long-ignored honey-do list We only have vague ideas of what we'll do in the fall. Maybe a few trips here and there, but nothing too long since I want to continue with my clinical trial through February of 2017, assuming all continues to go well.
This spring we also intend to put our lake house on the market. It was badly damaged last spring due to a broken pipe, and the entire interior was gutted and rebuilt. We bought it near the top of the market in 2005, and I'm just hoping to break even on it. We want down there on Tuesday to check it out and also get our boat out of the shop. I blew the engine last fall and after some dithering decided to have a new motor installed. It was a beautiful spring day in the 80s and we spent the afternoon on the water. It was a relaxing day, and reminded me of how grateful I am for each day.
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