Today's visit at my oncologist's office was very good. My consultation with the doctor was first, followed by treatment. As usual, I "checked in" on Facebook when I arrived, and was overwhelmed with the amount of support once again, just from that simple post. You people are amazing.
I loved knowing my PSA number before my doctor had a chance to tell me. The "drum roll please..." aspect of waiting for him to tell me my PSA level has been a little unnerving in the past. I like their new system better. As promised, I made a list of questions and suggestions from some of you and asked him each one. Here are his answers.
First of all, I told him how, three months after my first Lupron shot, when my PSA had dropped from 15.8 to 4.00, I had asked my old urologist what those numbers meant. My urologist at the time said that it meant my cancer was only growing at four percent, rather than 15.8 percent. I've been using that as a measuring stick for future PSA numbers. My oncologist agreed with that first assessment, but said that now, it's more about the trend than the actual numbers.
Different types of prostate cancer produce different amounts of PSA. So while my score of 4.77 a few months ago didn't seem that high when taken by itself, the fact that it had risen so fast from the previous score of 1.97 was a cause of real concern. But others can have much higher scores, and their number may mean something completely different than my score.
In fact, he said that my contention in my last post that a score of .16 means my cancer is growing at a negligible rate is wrong. It's better than that. The fact that the number is trending down means the cancer is actually shrinking. So there's that.
I asked him about Zometa and Prolia, both of which are bone-strengthening drugs that were suggested to me in comments to my post, My Next Big Decision. He didn't think either of those would be as effective for me as Xgeva. I asked him about waiting until I have symptoms to start on Xgeva, and he replied that the point of starting it now is to try to postpone the day when symptoms begin. I'm all for that.
I asked about getting a bone density scan, which one of you suggested. He agreed that would be a good idea, to get a baseline of how much bone density I may have lost from Lupron over the past year or so. They will schedule that for me, and let me know. He says it's easier than a bone scan or MRI. Nothing awful to drink, and no IV. It's basically just an x-ray.
I asked him about the statement from a friend's physician husband that with Xgeva, I have a 2% chance of having jawbone problems, but I'd have a 100% chance of cancer wreaking havok on my spine without it. Wreaking havok is a direct quote. He agreed with that, but added that since I've had a dental exam and x-ray and been cleared for Xgeva, my chances of getting ONJ from it are less than 1%. So that pretty much clinches it.
I told him I'd started the Rick Simpson Oil suppository program in December that he and I had talked about previously. I said I thought my low score could be partially due to that. He said it's possible, but he would expect to see a number that low just from this much time on Xtandi too. So who knows what's really working? Something is, so we're gonna keep doing what we're doing. He says he's all for it, though he winced when I told him the suppositories are frozen.
Finally, I asked him about getting the shots every three months instead of every month, which was also suggested to me. Some patients only get the shots that often, and some studies have shown it's just has effective that way. My oncologist is not opposed to that in the future, but would like me to get the shot every month to start with. Maybe we can back it down to every three months later, after we see how things go. But I'm happy to go in once a month for a while, because it gives me a chance to see my favorite nurse, the famous Melanie.
If you read my last post, you know that Melanie doesn't normally work on Fridays. She came in special today, just for me. When the doctor left the room and Melanie came in, I teased her that she only came in today so she could get another look at my butt. That's where you get Lupron shots. She joked right back, that yes, my butt is pretty cute, and I should be proud that I have my own personal nurse who will make a special trip just to get a peek at it.
This joking was in reference to the last time I saw her. A dear friend who shall remain nameless had just posted a picture of her husband's butt getting a Lupron shot on Facebook. An image that's still seared in my brain. I'll never be able to unsee it. Thanks for that, guys. I told Melanie about that when she gave me my previous shot, and we had a good laugh about it. She said I have a really nice butt, and I should put it on Facebook! But I will spare you that. You're welcome.
As expected, the shots were easy. I barely felt either of them. For whatever reason, they went with the six month version of the Lupron shot this time, which amounts to more of it in my system. So I'm starting to feel it in my hip now, and walk with a bit of a limp, but that will go away in the next day or two. All the while, Melanie and I joked and laughed and enjoyed each other's company.
When we were finished, I showed her my cross pendant, and told her about them. Then I pulled one out of my jacket pocket in a nice jewelry box and gave it to her. I repeated to her what I said in my last post, that since she treats cancer patients all day every day, and she had come in especially for me today, I thought she should have one. My wife makes them in just about every color, and she picked out a green one to give to Melanie. When Melanie opened it, she was delighted, and said it was her favorite color. In the selfie above, you can't see her cross, but we're both wearing our pendants.
As I was waiting at reception to schedule my next monthly visit for an Xgeva shot, she made sure that the date would fall on a day when she's working. It seems I really do have my own personal nurse. Then she gave me a big hug. The kind where you think it's over, but the other person doesn't. I tried to let go a couple of times, but she wouldn't. She said that this is the reason she comes to work; days like this.
I think this has to go down as the best visit to my oncologist that I've had so far. I hope you never need a Lupron or Xgeva shot, but if you ever do, ask for Melanie by name. She may even say you have a cute butt. #waroncancer