Posted on October 2, 2017
What a long strange trip the past month and a half has been as I started my first immunotherapy treatment (atezolizumab + FOLFIRI + bevacizumab), as I reported in my earlier post “”. The first two infusions went by pretty well – their side main effects (tumor site pain, fevers, fatigue) perhaps signs of successful immune activation!
Then something happened.
After writing that post, the second infusion side effects (in particular fatigue) did not go away throughout the entire 2-week cycle. That is a long time to be fatigued. It is also a long time to be beholden to treatment side effects, effectively not having an “off week”, but if the treatment is efficacious it will all be worth it!
When I had infusion #3, all of these same side effects came roaring back, but at much higher magnitudes. The fatigue was now incredible intense. For example, for the first time since the spring, I was now becoming largely bed/couch/recliner-ridden aside from an occasional excursion outside of the house. This impacted me but also my kids and entire family. Seeing Dad continuously laying down/sleeping is a lot to handle. It was not just sleepiness though – the fatigue went down to the very core of my being. To give you an idea of the situation: when I tried to eat lunch and attempted to lift the fork to my mouth – my arm muscles were so fatigued it felt like I had just done 20 push-ups and I had trouble, physically, eating! My appetite was also fading fast, I think largely due to the fatigue – I was simply too tired to do anything, including eating…
The next morning after a full night’s sleep, every muscle in my body was so fatigued that it felt like I had run a marathon the day before. All I wanted to do was lay curled up in bed. In conjuncture, the tumor site pain was continuing – both it and the fatigue – throughout the 2-week cycle. Once again, it is very tough on a cancer patient in treatment to no longer have an “off week” of normalcy. The infusion week symptoms were worse but the second week was now catching up & not that far behind. My eating going downhill… I was becoming worried. I am at my all-time weight low (115 lbs) so I don’t have a lot to spare! The continuous fatigue and required pain pills were also starting to impact me mentally – I was at times not thinking straight, the incoherence of a continuous fatigued semi-dream state now intruding into the “real world”.
So am I worried right now?
Yes, I am a bit.
So am I still scientifically & medically excited right now?
Yes, I certainly am.
What a psychological odd couple that makes! I may be a terminally optimistic scientist but I am also human. Due to side effect profile, this is the toughest regimen I have ever done. Since I have had FOLFIRI/Avastin many times without feeling these effects, for now I am blaming them on the atezolizumab immunotherapy.
Which is a bit disheartening since I have been anxiously waiting to try an immunotherapy PD(L)1 inhibitor for quite a while! I certainly was not planning for such side effects!!
BUT I repeat – that worry is tempered by continued excitement!
I honestly think my current treatment has a decent shot of being active! This has been correlated with a number of my side effects in some MSI-high CRC patients successfully treated. My will power and belief in the power of science has not wavered.
Do I know this or any of my planned future treatments will work? No, I don’t! BUT… that is the nature of science: you are by definition doing things for the first time, venturing off into the great unknown!
What I do know is that my current regimen and the next few planes on my experimental treatment taxiway (nicely fueled up – only thing remaining is final regulatory approval to dose me as experimental n=1 self-trials) are fantastic scientific ideas. For a Stage IV cancer patient with extensive disease it is impossible not to have Hope in that kind of situation – no matter what side effect symptoms you are dealing with at a given moment – no matter how bad they are!
BTW I have not gone into blog details on the next two plans/planes on the taxiway simply because they are still winding their way through that regulatory approval. You’ll hear all about them in good time. And overlaid with this is the continued scientific progress that will fill in additional new treatment planes if necessary. THAT is where my terminal optimism comes from! MSS-CRC WILL be treatable with immunotherapy trick(s) – I absolutely promise! The only thing that I am slightly nervous about is timing – if they are needed, will these breakthroughs occur on MY disease prognosis required timelines? That goes back to the intrinsic unknowns of cutting edge science… The intrinsic aspect of the Odd Couple of excitement and worry…
Near-term it all comes down to my CT-scan scheduled for October 11 which will give us a sign of whether or not the current experimental therapy is working or not. I was glad to see my most recent CEA test showed my CEA value had leveled off from its previous rise. This is great news because the CEA test has been quite predictive for me in the past! If it is working – BRAVO! I will continue, side effects be damned! If it looks like it is not working – I’ll be disappointed but not depressed or despondent – there is the next plane on the taxiway almost ready to go!
Thank you for joining me on this incredible 5 1/2 year journey ever since I started my “little blog” originally envisioned (but not for long!) for “friends and family” in January of 2015! Knowing that I have helped others by writing it has benefitted me tremendously and I hope for nothing but the best for all of you. The past few weeks have been tough and the upcoming weeks may be tough (or tougher) as well – but knowing I am continuing to help you… makes all that bedridden fatigue & pain etc so much easier to bear! So thank you… Faith in the power of science, faith in the power of an incredible world-wide support system, faith in the power of God to present opportunities – all intertwined to give me continued plausible HOPE.
Due to my intrinsic messiness and certain views on life, just call me Oscar Madison.
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