PET scan this morning. I had a bad feeling about this one, because I’ve been experiencing some seriously uncomfortable armpit pain on the right side, definitely related to my lymph node area where the cancer came back 4 years ago.
Sure enough, there was evidence of uptake in that area, as well as the return of the glowy spots peppered throughout my spine. So basically, I’m right back where I was when I was re-diagnosed in October of 2018.
So the bad news is, I have to change chemo regimens again. I’ve averaged about 15 months on each regimen, but my oncologist had hoped that we would get up to 10 years out of this one.
The good news is, I don’t have to do this chemo (EnHER2) anymore. Which is fine by me. I have never felt good on this regimen (I started it just over a year ago), and the steroids I’ve been on to combat the nausea and fatigue have helped me gain a lot of weight rather rapidly.
So now I’m going to a trio of drugs: One infusion - Herceptin, which I’ve had before. (I can’t tell you why. I thought once something stopped working you never went back) which I’ll do every three weeks, and two pills: Tucatinib (I’m calling this one ”2 Catnip”) and Capecitabine (Cape Sit a Bean. It’s like Cape Cod, but less fishy).
The pills will be taken twice a day, one of them will be two weeks on and one week off. New side effects will be diarrhea and a less effective immune system.
Dr. Jones is disappointed that EnHER2 didn’t last longer, but he has plenty of options available, and there’s always more research being done.
So, time to adjust to a new normal. Hopefully I’ll feel a little better for a while. Maybe I’ll be able to lose some of this weight and fit back into my fun wardrobe again by this time next year.
That was 3 months ago. Since that time, I have lost 6 pounds of steroid/ menopause weight (Yay! 24 to go!) and excercised approximately 5 days 😉. I started feeling “all over body-achy” about 2 months ago. I started referring to myself as “potato.” I couldn’t roll over, lay down flat on the floor, get up from the floor (or bed. or couch), and recently my hip and another spot in my pelvis got pretty achy and I started walking very slowly. The bitter cold that swept in this week definitely didn’t help.
I get scanned every 3 months to watch progression of disease. I got a scan on Tuesday, and was due to get a refill on one of the oral chemo pills that day, so I asked the doctor’s office to call me and just let me know if I needed the refill or not. (I’d rather not get it so that I don’t waste these stupidly expensive pills that Big Pharma pays for.)
Anywhoo, I got a call from my PA that afternoon and could tell by the sound of her voice that it was time to make another change. She said, “Um… how ARE you?” As if to mean, “This scan looks REALLY bad.” She offered to give me narcotics for pain, but ibuprofen is taking care of things for now, and I need to be able to drive, so I declined. I was able to look at my Chart and read the report from the radiologist who read my scan, and it indeed looks pretty bad on paper.
I met with Dr. Jones this morning, and he showed me the pictures from the scan.
Remember after I fell quite dramatically last summer and I said that if you feel like everything hurts and you’re dying, a PET scan will confirm? (Oh wait, that’s probably on FB too. It was Aug 14, 2022 if you’re interested) Well, every black spot on the left side is a cancer lesion and a place that hurts - with the exception of the one in my brain and bladder (the scan measures glucose, and they both have a lot of glucose naturally).
No wait! There’s good news… None of those black spots are in soft organ tissue. That’s really good. But Jones and I are both pissed that the oral chemo regimen did basically nothing.
Incedentally, this is the first time that I’ve physically felt pain from cancer in the 10 years I’ve had it.
So, the new plan is to hit those lesions hard with a systemic chemo called Eribulin. I can remember the name of it because I think we’re on Plan E and my ribs hurt. (Get it? E-RIB-ulin?) It’s a 5 minute infusion once a week, 2 weeks on, one week off. Side effects include nausea, hair loss (frick), neuropathy in fingers and toes, muscle or joint pain, and lowered immunity.
So… basically the way I feel now, but with hair loss and vague nausea. Awesome.
We will also continue with Herceptin once every 3 weeks (the first of my two weeks on the other drug).
This drug is known to dramatically reduce and heal tumor activity quickly, but then it plateaus and stops working again. Once there are any signs of regression, they’ll change things up again.
So that’s where things stand today. Mentally and emotionally I’m doing fine, as are Matt and the kids (oh, I forgot to tell the kids…). this is just another turn in the road for us. Two weeks from today is my 10 year cancerversary. We’ve been at this a while now.
I’m sitting in the infusion center as I type this. We had a major snowstorm that stopped the city for a couple of days this week so I’m making up lessons Friday (today) and Saturday this week. After I leave here, I’ll go to USF, teach a few lessons, go to musical rehearsal, then Matt & I are going to Improv Falls tonight to enjoy a little ridiculous fun with our theatre community.
For those keeping track of my busy-ness level: I am teaching about 27 students a week, involved in 3 shows, and opening a new Multi-Teacher Studio June 5. So, you know… the usal.
