Sorry to be so long in bringing y'all up to date on my CT. I've trying to absorb what it all means or might mean. The newest tumor has grown to within a millimeter of the old tumor. I guess it was tired of being runty.
So, Iritux has played out. I'm going to try the Big R - that's right - Regorafenib. Frankly, having read a lot of the experiences people on here have had with it, I'm scared s*itless. However, I'm hoping that maybe the side effects won't be so severe with me. It's a hope I know and really not one based in any kind of reality since I've gotten the majority of the usual side effects with some rare ones thrown in for fun with all the other chemos I've been on. The upside? I'll be off steroids. I know the damage they can do to the intestines and other internal tissues and, after being on infused chemo almost every week for the past two years, I've become concerned about that aspect of the steroids. So I'm off of that now. Yea! Also, the Erbi rash will go away and not come back. My onc was horrified at what my left eye looked like this morning and shocked when I told her it was much better today. I'm the first patient she's put on the Big R so I'm kind of a guinea pig. Only one other patient at the center has been on it and it wasn't a success for her but I'm aware of the odds. Since I'm only the second patient at the center to be prescribed this treatment, there's a delay because they have to get it and see if the company will foot the cost of the chemo. I'm hoping in the meantime, my feet will heal and I'll get a few good foot days before plunging back in with a chemo that's known to cause HFS.
Copied from my FB post just a little while ago - "On a way more fun note, I got an awesome pastrami and Swiss on rye at a sandwich place in Paris in addition to a really good slice of lemon meringue pie. I think I've decided that life's too short and I should have pie when it's available. One piece is plenty. We also had to kill time waiting for a prescription to be filled so we went to Beall's and looked at baby stuff. These two weeks until Michelle has her sonogram and finds out the sex of the baby are going to be so hard!! I could have spent a fortune that I don't have on cutey patootey baby stuff! Couldn't shop long because my back started hurting again but I plan to go back after the 12th."
It's stuff like I wrote about above that gives me the impetus to keep going on and trying to do what I can. My onc also mentioned that if this doesn't work, we might try different combos of chemos that I've already been on.
So that's where I am right now. I feel like crying but the tears haven't come yet. It kind of feels like a volcano in my chest so I hope I get some relief by crying or laughing soon. I got about 2 hours sleep last night. Hopefully, I'll not have to deal with insomnia tonight. That would be the coup de grace.
God bless ~
Guinevere
(Mighty Queen fighting the Beast!)
That baby is going to be sooo adorable!!!
Don't worry about it. All this time, when I read my blood results, I thought LDH was my cholesterol reading. Got LDH and LDL mixed up and found out yesterday it's some kind of hormone reading and it's really high now. Not sure I understand all I know about that...