I have a major decision to make with regard to my treatment in the next few days. It's a very difficult decision to make, at least for me. My next PSA test is next week. I expect the number to remain low, since I've only been on Xtandi for three months. But I'll find that out on Friday. I'm also scheduled to get two shots on Friday: My next four-month Lupron shot, and my first monthly shot of Xgeva to strengthen my bones. But Xgeva can have a scary side effect. That's why I'm still on the fence about starting with it.
I've talked about Xgeva before in this blog. In past posts, I've been pretty well decided against getting the shots because of stories I've heard about this particular side effect. It's called osteonecrosis of the jaw, or ONJ for short. In plain English, it's jawbone death. Some who are on Xgeva experience this side effect. You get exposed areas of bone in your jaw, and your jawbone starts to fall apart. Doesn't that sound lovely?
In case you're not up to speed on my condition, I am Stage 4 with metastasis to spine and ribs. Cancer on your bones can compromise their strength. This is especially concerning when you have cancer on your spinal cord, like I do. I have a friend whose husband's diagnosis is very similar to mine. He didn't go on Xgeva, and he had a vertebrae collapse from a tumor. He lives with paralysis from that to this day. I wouldn't want that, so that's an argument in favor of going on the Xgeva shots.
On the other hand, I've heard stories of those who have experienced ONJ from Xgeva. For some, there is terrible pain. You start to lose pieces of your jawbone. But this side effect is supposed to be confined to those who need a tooth extraction or root canal. So you're supposed to go to the dentist and get an x-ray first to make sure you're a good candidate for Xgeva.
If you've been reading this blog, you know I did that last October. I have a lot of fillings, and a few caps, and I hadn't been to the dentist in years. So I was nervous about the quality of my teeth, and how susceptible I'd be to getting ONJ. But my x-ray showed no need for extractions or root canals, praise the Lord, although I did have some cavities that needed to be filled. My bite still isn't right from that, which makes me nervous. I still have discomfort chewing on my left side, which I've only had since I went to the dentist.
So I hesitate. On paper, I should be fine to go on Xgeva. I asked about it in a support group today, and haven't heard from anyone who was cleared by a dentist, and still ended up with ONJ. But I keep hearing it's a very common side effect.
I don't know how common paralysis is in those with mets to spine who don't go on a bone-strengthening drug like Xgeva. I should research that. But frankly, I'm tired. Tired of the life-or-death choices I have to make. Tired of weighing which horrible side effect would be worse.
Which do you think is worse? Having your jawbone fall apart, or paralysis? Having to drink all your food through a straw, or not being able to get out of bed? I suppose paralysis would be worse, but I wouldn't want to live with either. Quality of life over quantity. That's my motto.
So one of my biggest questions for my oncologist when I see him on Friday is, what are the risks of both? If I go ahead with Xgeva, what are the percentages? Likewise if I don't. What an awful choice to have to make.
I know that for many, any treatment that the doctor says will help is a no brainer. But not for me. I want to know the odds. I want to know what is the worst that could happen. A low percentage is not necessarily comforting to me. And while I still have no symptoms, it's easier for me to believe I'll experience problems from treatment than from my cancer itself. That's all I've experienced so far.
I don't have a spiritual point to drive home in this post. I'm just letting you all in on my dilemna. Do I go ahead and take my chances, or hold off and take my chances? It's a gamble either way.
That's the life of a cancer patient, especially one with an aggressive, Stage 4, incurable cancer. So many life-or-death decisions, and many times, there are no good choices. Please pray for me over the next few days that I'll make the right choice. #waroncancer