On Wednesday Tracey and I met with Dr. R for my usual weekly meeting prior to IV Chemo. Tracey came along as we were thinking this was going to be a bit of a different meeting as we were expecting the discussion to be about switching my drug treatment.
As I have mentioned in the past I am on Temsirolimus and take it weekly by IV. I'm pretty sure I have also mentioned that while the drug has had success in my lungs, it has had less success in the liver and peritoneal cavity. I have had growth in this area while I've had reductions in the lungs. Today we were thinking the discussion was going to centre on switching to Cabozantinib but instead we collectively decided to hold off on the switch.
As Tracey likes to say 'I'm not gonna lie' but I'm relieved. Cabo is a tough drug with very challenging side effects and I wasn't looking forward to it in any way, well, except the reduction of tumours on my liver or peritoneal cavity. That would be nice.
All of these drugs are tough, and Temsirolimus is no different, but it is tolerable. The main challenge, as I have mentioned way too many times is the full body itch. An itch like a body covered by 75 mosquito bites. 24 hours a day. There are other side effects but the less I acknowledge them the less they bother me, and the less whiney I appear.
But it truly is tolerable and I don't need a second opinion on avoiding Cabo for now.
The biggest reason is that I have had a way better quality of life over the last three months. I can do stuff - as you have seen if you follow me on social media. Actually, I will write my next post on doing stuff, and the importance of planning to do stuff.
Our concern is that if we go on Cabo then this existing quality of life will dissipate and mentally that wouldn't be considered a successful move.
So, good news is I'm staying on Temsirolimus. Bad news is that I may have to do something else eventually, but that bad news is hopefully further in the future.
Oh, the other challenge is that I will be staying on IV which means I am staying tethered to and IV at the Tom Baker Cancer Centre every Thursday. This makes it tougher to get out do stuff, but so far I've been pretty good at working around it.
PS It is interesting to talk about the side effects as they are the number one thing we pay attention to as patients, well that and the advance of the disease, oh and the psychosocial part as this journey impacts the whole family. Ok there is lots we pay attention to, but the side effects are a daily reminder that you are dealing with something significant.
Here is an example of how powerful the treatments are - my fingernail shows you where the treatment began. This is not unlike when Pazoponib changed my hair to silver, or when Sutent gave me a big rash on my junk. Side effects are a part of the process and it's up to me to determine how much I let them rule the day.
For now, my fingers have racing stripes.
