Cycle 13 Day 24. Wednesday, June 3rd. 5:22 in the morning. The twisted adaptability of the human life form. I realized, laying here in my new all-time low in life, how completely twisted our human life form is. How completely devoid of context it can be in its search to adapt to new oncoming environments, contexts, and challenges. Let me just prop up the phone so I don’t have to hold it. Maybe that’s better. Okay. So I’ll give you guys the rundown. This will be quite a long rundown indeed, on my all-time low. The Descent Picture yourself being Victor, having gone through your third retreatment with aggressive systemic therapy, but still in a context where you feel like you’re in control. You have the clear downward spiral of the four-day systemic treatment, surrounded by a six-day concomitant water fast, going into the slow but often somewhat steady recovery, which normally requires an additional week to get your bearings straight and to be able to refeed, to gradually strengthen yourself, and to get back into an active life. Even getting back into strength training and other reparative and restorative protocols, such as good diet, sauna, social life, creativity, et cetera. A lot of hassle has gone down the road during all of these treatment cycles. But what happened specifically, how this actually kicked off, was me, on a Friday, expecting to start treatment on a Monday for the 12th cycle, suddenly being informed that my oncologist had delayed treatment without informing me prior to postponing the treatment. Of course, that put everything in limbo. I was there on a Friday. I wasn’t able to revert that decision because the oncologist didn’t give me any head notice, and once I was informed, it was too late in the day to make any changes. But the initial thing that triggered that delay in his mind was that one blood marker especially, LD (lactate dehydrogenase), had doubled. It was still basically within the reference interval, but it had doubled from one reading to the next. So he was concerned that I had had some kind of reaction to prior treatment that we should monitor, to see that this value didn’t escalate, but rather came down. Then we monitored it for a few days and it remained stable. A week later, I went through the third retreatment, my 12th cycle. Then I was able to recover from that. There were some further delays for me to get the scan follow-up because of scheduling mishaps and mistakes that are directly blameable to my contact nurse, basically. Anyway, once we got the scan back and had a meeting with the oncologist, things looked a bit bleaker. It was my first scan whilst having ongoing treatment where not all of the signals we picked up prior showed clear signs of regression. In addition, there were new signals. And those new signals were no longer just inside the lymphatic system. They were namely seen in the liver. There was some increased activity picked up in the hilum, or potentially adjacent to the hilum in a lymph node pushing on the hilum. Then the radiologists commented that they saw vague increased uptake throughout the liver, basically. That might be an anomaly, in terms of it just being an artifact. But they also saw some diffuse areas, at maybe three or four points in the liver, that could be explained by diffuse tumor activity or by some inflammatory state. Anyway, this didn’t point in the right direction in terms of my treatment working efficiently enough, which was a bummer. I was basically standing with the choice of whether to proceed with the current treatment or to change it. And it seemed straightforward to change it. I had two options, basically. One was to switch to another chemo that was similar to the one I was doing. The same kind of cocktail, but instead of FOLFOX it would be FOLFIRI. A bit of an increase in risk to damaging the gut, but I was reasoning that this risk of damage should be offset by me fasting. But then we had the other option, which was potentially more potent and, importantly, a new mechanism as opposed to the other mechanisms of action of the treatment. This one is quite different from the other ones. Namely Enhertu, which is an antibody. But it’s an antibody specifically binding to the HER2 receptors that are overexpressed in my tumor, as evidenced by numerous tissue samples. These antibodies also have bound to them a chemo drugs. So once they are bound to a tumor cell, preferably, and that tumor cell engulfs the antibody, it will also engulf these chemo drugs. And if effective, they will have the cell collapse in on itself. Once that cell is broken down, those chemo molecules can exert a second-level “bystander effect” on new cells in the adjacent territory, where they could have additional damage caused to either healthy cells or tumor cells. So I was placed with this decision. And I made the decision for the more aggressive, potentially more effective option in Enhertu, which had many more unknowns. This bystander effect and the mechanism through which it is taken up by cells firstly makes it less advantageous to combine with water fasting, because the other chemos are mainly taken up by cells that are metabolically active. They are taken up through the growth pathways. So if you’re fasting, your healthy cells will be less receptive to those. Whereas with HER2, it’s less about how metabolically active a cell is to decide whether something will be taken up or not. However, you could have some protective effect by fasting still, as once those molecules are in the cell, they might be less likely to cause damage if a cell is in a protective fasting state. So I decided to go with that treatment and do a three-day fast instead. The Treatment Shift Now we’re already going into the week starting with Monday, May 11th. What had occurred the week before that was that I had my last strength training session, and since then I haven’t been able to go back to the gym, which we’ll get to. On Sunday, May 3rd, I had my last strength training session. Already during that session, but especially the day after, I felt this strong sensation of tenseness and stiffness in deep muscle tissue around the thoracic spine. From Monday, May 4th onwards, that pain persisted. Within that week, it progressed quite quickly with other sensations that hindered me from being physically active. I started to feel pain and pressure around my ribcage, at the lower level of my ribcage, where the abdominals meet the ribcage. And I was starting to feel drained of energy, gradually more and more lacking energy. But I was still able to eat normally, so I kept eating. I wasn’t training anymore for the rest of that week, basically. I was less and less physically active. Then the next week came. On May 11th, I started fasting. There was also a plan here for me to be extra vigilant going into this new treatment. So it wasn’t only that I wasn’t able to train a lot during the week prior. Part of it was also planned for. But still, I was starting to feel very weak the week before. Then I had my last meal at lunch or breakfast on Monday, May 11th. I started fasting. I did not do an HBOT on Tuesday because I thought it would be too aggressive for this new treatment. Then on Wednesday, May 13th, I had this Enhertu infusion. And the Enhertu infusion took two hours. Then I went back home and started to feel the effects of the Enhertu treatment, which was low to medium-level nausea throughout the day, and no real appetite. But from day three onwards, I started to do minor refeeding anyway. I reckoned it wouldn’t impact either side, whether the treatment would be taken up or not. Also, by this point, I was feeling weak. So I actually gave myself the option to potentially fast up to five days, but I wasn’t feeling up to it because of the weakness I’d started to feel already the week prior. When I started fasting on Monday, May 11th, my body weight was clocked in in the morning at 89.5 kilograms. I looked in the logs. For two weeks prior, I’d been consistently walking around 90 kilograms. So that is kind of my goal weight for having recovered and gotten back to training. I was even up to 92 kilos at one point during that recovery cycle, I think. But what happened now was that I started to drop in weight because I wasn’t able to refeed myself fully. This persisted. A week into the Enhertu treatment, I still wasn’t able to refeed sufficiently enough. So I was gradually losing weight, losing even more energy here. Hospitalization If we move already up to two weeks after the Enhertu infusion, we’re at the low point where I was feeling so bad that there was nothing else but to have someone put me in the hospital. And I tried to escalate this already earlier. We’d known about liver involvement already from the latest follow-up scan in beginning to mid-April. Even before that, in March, we knew about the increase in LD and AST, ALAT markers. But no one had really done any proper follow-up. I was given a date for biopsy which was like a month in advance, so the lead times to do anything were just ridiculous. But then now that I’d come to this f*****g end point, where I was feeling like there was no life force in me anymore, completely devoid of life force, I was just— This had been going on for almost two weeks already, that I had literally just been sitting down, hunched over in a fetal position all day, deep breathing to just get through the day. And then throughout the night, just fighting to get some increment of sleep through collapsing. Throughout this last month, I’ve only been able to sleep on the back because of the pressure from the ribcage. So sleep has been collapsing on my back, and then soon thereafter waking up from overheating, drenched in sweat, and trying to somehow reboot my system to be able to do it all over again for four or five rounds, if I’m lucky, accumulating like four to five hours of sleep effectively. We’re now at the 2
