Navigating My Health Journey: An Update on Recent Treatment Plans

Well, there is no treatment right now. Due to side-effects that were unbearable, I stopped taking everything. After a two week break, I tried to resume taking 300mg daily of the Braftovi therapeutic pill, but within 3 days I felt sick enough to go to the emergency room. I was unsteady on my feet and had a lot of pain in them again. The doctors suggested that I stop taking the drugs all together.

Uncertainty and Waiting

So now here I am, drug free for about a month excepting those brief 3 days back on. It is very uncertain what is going to happen to me not having any drugs to fight cancer on board. But I feel normal. I have some fatigue still, but overall, my feet feel better again and I can walk without pain.

Things are strange. I'm waiting for a PET Scan to get scheduled for later in this month. It will be on June 25th at 12:15, but they still have to call and do the intake for it.

PET Scans are used to show where the cancer is in the body. During the scan, they inject you with a radioactive sugar and after fasting, the sugar gets eaten first by cancer cells.

After my Next PET

My next PET Scan will let the doctors know the level of disease progression. I might end up back on both drugs because my heart function did return to normal after stopping Mektovi for the last 4 months. So I might end up on a lower dose of the same drug protocol that they were using; Braftovi and Mektovi.

Or my doctors and I might just keep me on nothing with more monitoring via PET ordered for another 3 months down the line.

End of the Line in Treatment Options

I am at the end of the line in terms of treatment options. The Braftovi/Mektovi combination is all they really have at this stage; however, my GP Oncologist was going to look into trials for me.

I would be interested in a trial. I'd try anything to move this to a point where someone could say I was cured or out of the woods. It also would feel better to say I was doing something to "fight" the cancer. Doing nothing, like I am now, feels so strange.

Strange Feeling Fine

Other than some fatigue, which seems to also be lessening since stopping the medications, I don't feel sick. I feel so much better on nothing, my appetite has resumed to a normal level. I actually feel hunger and satiation when I eat. Some pleasure has been returned to eating, which is an enjoyable part of my day again.

My feet just keep feeling better every day. I have been off the medications for approximately 2 weeks since that small blip where I tried to resume them. Since then, I had an elaborate pedicure where she removed so much dead skin off the soles of my feet. The soles of my feet are still callused, but I have another treatment at the spa scheduled for a subsequent foot peel. I'll try keeping it up this summer. I can say, that treatment hurt and led to some discomfort, but it's been crazy how much better my feet feel and there's less nerve discomfort too. I've been able to reduce my painkillers and have goals around that.

Getting to Medication Free

It's going to be a long road to getting to a medication free status. I have been taking 12 mg of long acting hydromorphone twice daily, which is the one medication I've been able to reduce to once daily.

Then I have break through hydromorphone, which I used only 8mg of last night, but I do average taking that dose twice every night.

It is a goal of mine to not need the pain meds. It would be good if I could get to a medication free status, so I will keep reducing where possible and living life as deliberately as I possibly can.

Next Steps

The trip I was planning to France in September might fall through. I need to understand cancellation options for this, so I wrote Wingbuddy to find out. Dean and I are taking a break right now, but I don't foresee reconciliation happening. I just have become a different person because of this illness and don't see myself getting back to normal in anyway.

So I will, if cancelable, probably just cancel that trip and will be looking into last minute deals, using my mom as a travel buddy. We looked into some cruises with Holland America and like one that goes out from Rotterdam to Iceland. Not many options when you look for last minute deals, but still with my condition it's easier than planning something long-term away. Like even September was clearly too far away to plan for. We shall see, now it's just waiting until my next PET scan.