I wanted to post a lengthier update on my health to fill in some of the gaps I left with my quick post and to let you know how I’m doing. My list of other type of posts with musings on what I’ve been through and what I’ve learned keeps growing – one might follow tomorrow but I figured the health update might take up enough of your time today :)
Firstly, I’ve been taking rather high dose Prednisone since Tuesday evening (60mg, 2x/day). The primary concern was two of my liver related lab results from my pre-treatment labs that I did on Monday. Leading up to this I had had several symptoms that I assumed were related more to travel fatigue and other things but turns out can be related a lot to liver trouble. Dry mouth, fatigue, dark urine, fever and chills, extreme night sweats, even the low appetite and nausea and vomiting (although that was likely due in part to a separate attack on my gastrointestinal linings). In general, I felt like I had a slow onset flu – even thought I might have Zika! And I believe it began on the day I got my sunburn in St. Lucia on the boat and took Dramamine because I attributed lots of sleeping and fatigue to the Dramamine for a while. Because there is no concern of cancer in my liver and because my prior liver labs were normal, this is almost guaranteed to be a result of the immune therapy combination treatment that I am on. The other concerning labs (though also not surprising) is that my thyroid has followed the typical immune attack pattern of hyperthyroid to hypothyroid indicators and I require treatment, possibly for the rest of my life (but hey – I’ll take it!)
What all of this tells us is that my immune system is in HIGH, HIGH gear. This is NOT a bad thing when it comes to this type of immune therapy treatment. In fact, the goal is to create a state of “brakes off” immune healing. We already know that the treatment is working well for me thanks to the glorious interim scan results (which I can still hardly believe). I have asked Dr. Bauer (my very communicative and intelligent local medical oncologist) whether we can do another scan now but he does not think exposing me to more radiation is necessary and has agreed to take the stance that we can assume at this point it has already shrunk more (and possibly even my highly optimistic view that it is ALREADY toast). So, enter the steroids.. they put the brakes on the immune system. So… we took some specific brakes OFF with the treatment and now they put some general (non-specific) brakes back ON. So, what the steroids do is CALM DOWN this high gear. What that has meant for me so far is, within 24 hours (!) less fatigue, returned appetite and no nausea/vomiting, and no more fever and chills. Now that it is a few days later I’m already getting even more energy back and had almost no night sweats last night. Still a bit of dry mouth and a couple of other things but the relief is wonderful and I’m so, so grateful to my family for stepping up and stepping in at a moment’s notice, as always, to help with James when I wasn’t feeling very capable including Danny, Junior, Kelly, Lydia, and my mom over these past few days. You guys are so important and valued, so thank you again and again.
What all of this tells us is NOT that my treatment is going to immediately stop working on what it is supposed to be working on. A few things I DO know is that the 1) my body was in high, high fight mode and 2) as I said, the specific brakes (that we want off) are still off because my body has already made memory T-cells that have been in there, healing this thing and are on the lookout for more. 3) Because the general brakes are being put on, there may be less of the fighters produced and circulating during steroid therapy and over time they may start to forget, given that I’ve really only had three rounds so far, but I don’t expect this to mean that things go right back to where we started before this treatment. In fact, this may hold steady or even shrink while I’m on the steroids. So now, it’s only a matter of getting the rest of my body stable enough to think about when to start back on the treatment and IF I’m even going to get the 4th and final combination dose vs. just starting right in on the single agent (which is less effective for existing tumors but much less toxic on the body). If I didn’t make clear before, after the 4 combination rounds, I would have switched to a single agent every two weeks for 2 years as long as it continued to be effective. So, we may just jump right into that if things don’t calm down in a big way. However, if my side effects are any indicator, things have really calmed down already!
So, best case scenario the labs today (Friday) show significant improvement and we can start titrating me off of these steroids (probably 8 weeks of titration!) and get things back on track. If not, I will be getting biweekly labs and as soon as there is improvement we will begin the titration. In the meantime I have high dose steroid side effects to look forward to such as energy (yay!), irritability (growl), sleepless nights (owl) and apparently muscle weakness (tell me how THAT makes sense with steroids!). So please bear with me if I seem strange and/or antsy. I will be making lots of extra time for stress management and relaxation to try to balance these things but it will likely be difficult to be perfectly pleasant all the time :)
Interestingly, the one major side effect I was continuously warned about with the immune therapy has STILL not occurred (knocking on all the wood around me) is Major! Disruptive! Explosive! diarrhea. Like 20 times a day I’d be running to a toilet… So, yes, I’m thrilled to report that I’m not suffering from that horrible affliction.
Just wanted to give everyone more information about what happened, what it means, and what the plan is. I’ve been getting a lot of questions, and reasonably so – I forget that you haven’t all been through the crash courses in medical oncology and immunotherapy that I have in the recent months!
The “take homes”
1) I’m feeling so much better already!
2) My family is awesome
3) This isn’t the end of my treatment or the end of its effectiveness
4) I don’t know yet exactly when I will get another scan or start treatment again, it depends on my labs
5) Yay for no explosive diarrhea
Thanks for listening and caring!