Or maybe 1 1/2 steps back, I’m really not sure.
My current pill schedule is 2 weeks on, 1 week off the Capecitabine and the Lapatinib I take daily. I started my week off Capecitabine a week ago Friday – the 10th of March. Everything seemed fine, but on Sunday or Monday I started to notice the lump at my neck was bothering me a little bit. Up to that point I knew the lump was there, I could feel it and feel it pressing on my neck tendon but it wasn’t hugely disturbing. The area started to
ache and it bothered me quite a bit depending how I turned my head. By Wednesday I could feel it all the time. I was hoping the discomfort was inflammation due to cell death but I really have no idea.
I noticed that a couple of small bumps I had seemed to be getting bigger and the redness in the whole area was coming back. My arm started to get less functional. Overall, it felt like the cancer was starting to progress again. The positive thing was the mass in my armpit was still mostly gone. The exception was what felt like one swollen lymph node that I could make disappear if I gently massaged it.
On Wednesday I saw my oncologist. When she walked into the room the conversation started something like this…..
Onc: How are you feeling?
Onc looking disappointed: Just OK?
Me:……..yea, just OK. How was my CT?
Hmmmm……an interesting start to the appointment. Turns out my CT was just as wacky as my symptoms were. My bone lesions continue to be stable. One of the spots on my lung had disappeared but the other one may be slightly bigger. The radiologist wasn’t totally sure, I think there was a reason why it was difficult to read but I don’t remember what it was. The CT also had a good view of the lump in my neck. It is not a single swollen node, it a confluence of nodes. That means it is several nodes all mooshed together with stuff growing around them. There was sign of necrosis so it is possible my discomfort is from dying cells.
At that point I told my onc that it felt like with this week of being off the Capecitabine it really seems like progression is happening. I was wondering if it was possible to decrease the length of the off time down from the normal 7 days to maybe 5. My onc said that the standard is the 2 weeks on, 1 week off, but perhaps I should be on the Capecitabine full time. I was against that idea as it feels like my life is already controlled by my pill schedule…….when I can eat, when I can’t eat, what I can eat. And then having to inject the anti-coagulant and my days feel pretty full and I look forward to my week off.
My onc told me that I am her first patient on this drug regimen so she is watching everything about me very closely. She wasn’t sure about how to adjust my schedule but she was totally open to the idea of decreasing the number of off days. She told me to change into a gown and she would go and talk to a couple of her colleagues. I got to be the patient making everyone else wait that afternoon, I’m pretty sure my onc was gone for at least 10 minutes.
When she came back, my onc said that it was agreed that we could try out the 5 days off schedule. I was thinking it would be 14 days on, 5 days off, but oncologists do like to work with 21 days cycles, I suppose it is easier to do regular scheduling on an 3 week cycle than a 2 week 5 day cycle, so it will be 16 days on, 5 days off. By day 14 the side effects were still tolerable, the biggest concerns are preventing mouth sores and making sure my hands and feet are always moisturized to prevent hand and foot syndrome, so I am hopeful I will be able to handle 16 days.
My onc did a quick physical at that point and said that things looked pretty similar to when she saw me 6 weeks ago. If I hadn’t started going backwards last week I would have looked significantly better but that’s life.
We decided to set the next CT scan for after 3 ccycles of the new pill regimen. The hope is that it will be more clear cut as to whether the current drugs are working are not. They did seem to be doing something but now we need to see if they reverse the current progression.
That appointment lasted about 35 to 40 minutes……sorry to all the patients that had to wait after me and to my mom. She drove me to the appointment so she ended up sitting around for a lot longer than expected. Such is the reality of a cancer patient, we likely spend more time waiting for appointments than actually in appointments. 😝
After the appointment it was a quick trip to the Cancer Agency pharmacy to have them ship my pills to Saanich Peninsula Hospital for me to pick up rather than have to drive back to the Cancer Agency the next day to pick them up. They have to count out 224 pills and stick them into the pill organizer packs so it takes a while and I don’t have any desire to sit around waiting for them. Then it was over to the Royal Jubilee pharmacy to pick up my next month of anti-coagulant. Then we were done and could go home. Yay!
Thursday I whiled away a few hours with my aunt. She is a GP so it is always interesting to swap medical stories and knowledge as we see the medical system from different angles. Then it was movie time……..Kong: Skull Island. Loved it! The effects were excellent, not so interested in the blowy up stuff, but the animals were absolutely amazing. Definitely worth a view if you haven’t seen it yet.
That evening I found that my shoulder was starting to bother me. I was starting to get T-rex arm again. Not as bad as before, I can use my left hand to drag my right hand to my nose but it doesn’t happen easily. By bed time I was extremely uncomfortable. There wasn’t any joint problem but my shoulder must have been sufficiently swollen that the muscles and tendons ached like I had been carrying a 50 pound weight for hours if it wasn’t properly supported. It isn’t so much pain as the feeling of overuse, my shoulder feels exhausted. Not pleasant is all I can say. I ended up sleeping partially upright on the couch as I couldn’t support my arm properly to prevent any strain on my shoulder if I was horizontal.
I did start the Capecitabine that night as well so I was hopefully things would start improving.
Friday was the same, exhausted shoulder. I measured my arm……yes, I have been measuring it every week or so to track the swelling, and it was slightly worse than the previous week but not as bad as it had been. It was another night on the couch but it wasn’t as bad as Thursday night.
Saturday was a little better but still not fabulous…..not that I was expecting fabulous but one has to have dreams 😁 And Saturday night I was able to sleep in bed, it took a few adjustments to get comfortable. I have been sleeping with a pillow supporting my arm for a while now but it was a bit of a struggle to get the pillow just right. It was so nice to lie horizontally again. Weird that I missed not being able to lie flat.
This morning, Sunday, when I woke up my shoulder felt a little better still, but the lump in my neck, holy crapizoid it was in psycho crazy overdrive. It was the most swollen I had ever seen it and it was really interfering with the tendon in my neck. I had to spend a few minutes every hour with my head tilted to the right to give the tendon a rest. Poor thing, I hope it doesn’t get all stretched out of shape and becomes flabby and useless. That would be tricky. So, because of this new development I spent most of yet another day mostly on the couch with my arm propped up. If my arm wasn’t propped up just the normal pressure of gravity pushing on my shoulder pulls on the lump in my neck and really bothers me. Still managed to bake some cupcakes though 😉
This is now day 4 or my new pill schedule. Hopefully things will rebound quickly. I have a follow up at the Pain and Symptom Clinic on Wednesday and I don’t want to get handed any overkill pain meds.
Ok, enough crappy stuff, here’s a cat pic……
And now she’s helping:
It is getting difficult as her feet keep hitting the mouse track pad and sending my cursor to random places. Her helping isn’t the most helpful.
That was sufficiently long-winded. Time for bed.