Mixed results & feelings

The 1 week of being off of the Afinitor became 2 1/2 weeks  as it took longer than planned to get in for the petscan.   My scan was done on Thursday, and I met with my oncologist today.  The results were a bit mixed though she said to think of them as positive.  The lymph node area has gotten smaller & less bright, but the liver area has stayed the same size while getting brighter.  It is hard for me to think of that as positive, but I am trying to get there.

I will be going back on the Afinitor,  but instead of the 10 mg, I will be taking 7.5 mg.  We are hoping that the side effects will be less with that.  If the problematic side effects start up again, I'm supposed to call the oncologist, stop the drug, and we will start on an even lower dose of 5 mg.   The oncologist said we probably would not go any lower than that.  

I have very mixed feelings about all of this.  On the one hand, it did shrink the lymph node area; so, aren't some side effects worth it..., but at the same time, I know this drug, for me, kept compounding the side effects, and at some point they become intolerable.  I trust my oncologist, and so I will have to not let my personal pride or feelings of "failing" the drug stand in the way if the side effects do start up again. 

Honestly, this drug was hard, and I'm nervous about going back on it at all.   Below are some of the side effects that I got previously which might help you understand that feeling as well: 

* mouth sores -- There is a steroid mouthwash to help ward these off, but when you teach and play instruments, this one is not fun

* wearing away of linings -- This is part of why the mouth sores occur, and for me it made my bladder autoimmune start to be much worse as well. 

*rash -- Well, you already know about the fun that this one caused. 

* hardening of skin near fingernails/ losing fingerprints/ losing fingernails -- This one is so weird. The tips of my fingers became really hard which caused pain & splitting there, and then because of the continual skin changes, anything that took my fingerprint wouldn't register.  I'd reset the fingerprint & by the next day it wouldn't work.  Along with all of this, a couple of my fingernails tried to actually come off, which is a pretty common side effect of the drug, but not an enjoyable experience.

*Nausea/ inability to eat much/ weight loss -- The nausea was annoying, but honestly, I've been trying to lose weight for years....so I don't mind this that much, lol!

* blood sugar tripling  - This is what made my infection so difficult to manage b/c within 8 days of going on the drug initially, my blood sugar tripled.  I went from taking the smallest amount of metformin you could take to the maximum dose and adding two other medications as well.  I wasn't aware that out of control blood sugar could make you not heal. In fact, it took until the week of my petscan for my blood sugar to come down enough that I could actually have the scan.  (Guess I'm glad there was a delay in being able to have it)

*cholesterol & triglycerides tripling -- In those same 8 days, my well controlled cholesterol & triglycerides went haywire. Thankfully a medicine has brought it down some, but still not where they should be.

I know that there could be worse side effects, and you never know what the next drug will bring.  So, the devil you know and all of that.  Obviously, I want to stay on each drug for as long as possible, and if this makes that possible and helps keep me stable or regress I'll take it.  I just hope the reduced dose truly means reduced side effects. At least this time, I have the knowledge of what to be on the look out for.   I know how lucky I am to still have this option and others in the pipeline. 

Thank you for the thoughts and prayers over the last few weeks, and I would really appreciate it if you would pray for less/no side effects to be able to stay on a dose that will work the best for as long as possible.