I haven’t posted in a while. Sorry about that. I’ve talked with most of you in person rather than updating this site. The reason why I haven’t updated, honestly, is because it hasn’t been news I wanted to share. The news I want to share is “The tumors are shrinking!” or ” the tumors are gone”. But I haven’t been able to share that news because that’s not what has happened.
Two months ago when Steve had a CT Scan there was a little bit of growth in his lungs. The doctor believed that at the beginning of the year when he changed drugs and went a couple of cycles without one of them, the growth happened. At the same time his CEA number went up again and the last post on here, was that the number went down. The doctor thinks when the CEA number went up, the growth happened and when it went down, the growth stopped.
From everything I’ve learned the past year, I believe that is what happened as well. But that worries me because it happened so quickly when they removed one drug. So I want those suckers to shrink!!
For those of you that follow me on Facebook, I didn’t post that Steve was having a CT Scan on Friday because then if the results weren’t what I wanted them to be, I knew I wouldn’t want to talk about it. The results I always want are “the tumors are shrinking” but they haven’t since October. They’ve stayed the same. (there is something to be said about not growing too).
So Steve had another CT Scan Friday and we saw the doctor today. Still no change. Now that’s not the worst case scenario, but I want to see them shrink because then we have more time for a new drug to be released that will (hopefully) wipe them all out!!! The doctor has decided that it would be best to change drugs now rather than to wait. I’m all for it. And so is Steve.
The drug they are removing is the 5FU (the bag he takes home). That is the drug that is causing the side effects – the biggest one is the mouth sores. That is the one he’s been on just about a year now (can you believe it!). He’ll be replacing it with a new drug called Erbitux. The Erbitux is only administered at the infusion center and there is no bag to take home. What does that mean to Steve? FREEDOM!! Sounds so silly but to not have to be tied to that bag, and carry it all around the house for 2 days, not shower, sleep on the opposite side of the bed so I’m not on the side of the bag, and all the side effects that come with it – is like a VACATION from chemo for Steve.
And to have a week with no mouth sores?? Pure Heaven for all of us. (Holly agreed!).
Now what kind of side effects will the Erbitux bring? The biggest one the doctor says is acne and rashes. Acne like a teenage boy! Steve could care less about that, me as well. As a matter of fact, he still deals with minor acne issues even in his 40s so not biggie. The doctor said they can prescribe an antibiotic for it. Of course there is a slight chance he won’t have this side effect, but it’s the more common one.
Will he get mouth sores again? Probably not, according to Dr. Rana. It is a minor side effect but he hasn’t had anyone get them on this drug.
The drug is normally given every week, but he’s going to try it every 2 weeks with a higher dose and see if that works for Steve so he can have a week off. We’ll see how that goes. They are starting him on this new drug this week (yes it’s a chemo week again!) and if he feels up to it, he can go to work on Thursday and Friday!
Needless to say, this was the happiest I’ve left a CT Scan result appointment since October. I feel more “hope” with them trying a new drug. I don’t like being at a stand still. I want to see the tumors shrink. I want to see some improvement. I want more time with my husband. The more they shrink, the more time we have.
The end result hasn’t changed, and may never. But after a year of him doing as well as he’s doing, I don’t plan for the end result anymore. We keep making plans and moving forward. We talk about a future as if it’s going to be there, just as we thought 2 years ago. We have no idea, so we can’t do it any other way.
Steve is pretty happy about this change. I think he feels like he has a little bit of his life back not having that bag. We take what ever we can these days.
It will be a year on June 23rd that Steve started chemo. That’s really good. He’s beat some odds already. Lets beat some more!