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.
Congratulations on your continued success! I got good news on my final path but always view "Ken's Plan" as my fall back plan B. At least there is a plan B. As far as your post. The way thus drug works doesn't seem to give the cancer a way to morph outside of the drug's effectiveness. That protein is critical to cancer being able to succeed and Nivolumabs ability to block it seems absolute in your case and others. If it works so completely now, logic tells me it will continue to do so on the cancer. Just have to hope the side effects don't worsen. I'm curious if it's actually killed every cancer cell in your body alead. I suspect it has but no one is "Dying to know" if you get me. Keep on taking the drug and powering on.
ReplyDeleteCongratulations on your continued success! I got good news on my final path but always view "Ken's Plan" as my fall back plan B. At least there is a plan B. As far as your post. The way thus drug works doesn't seem to give the cancer a way to morph outside of the drug's effectiveness. That protein is critical to cancer being able to succeed and Nivolumabs ability to block it seems absolute in your case and others. If it works so completely now, logic tells me it will continue to do so on the cancer. Just have to hope the side effects don't worsen. I'm curious if it's actually killed every cancer cell in your body alead. I suspect it has but no one is "Dying to know" if you get me. Keep on taking the drug and powering on.
ReplyDeleteHello. My name is Kim and I have been following both of your blogs. My Daddy, age 72, was diagnosed with Stage 4 Urothelial Cancer on 6-18-2015. Several things led up to his diagnosis, one being he had blood in his urine for a very long time which his Urologist had been supposedly treating. My Daddy ended up in such severe pain that he had to be rushed to the nearest hospital where his cancer was found. From there, he had two major surgeries (one to repair the T9 vertebra in his spine due to fractures and one related to the left kidney where a golf ball size tumor was located.) He had three Cyberknife Treatments related to the spine finishing in July of 2015. He had 8 cycles of Nivolumab finishing in November of 2015. He is doing GREAT! As of January of 2016 the lesions in the bones were remarkably smaller and the soft tissue lesions were almost all undetectable. He goes for his next Petscan March 18, 2016. It is very helpful for me as his daughter to read both of your blogs, as it helps me to deal with this journey we have been dealt with. I pray for both of you each and every day.
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