Saturday, January 7, 2017

My Next Big Decision

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


  1. When my doc first proposed Xgeva my insurance company said we had to use zometa instead. It comes with some of the same warnings, but is an infusion rather than injection. I had some dental work (fillings) before starting, but have had no problems. Like you, I remain pain free, but unlike you I have been on chemo for 18 months, although I just started bipolar androgen therapy. Good luck.

  2. Have they talked about Prolia? Prolia is for osteoporosis, an injection every 6 months. I've had no side effects that I can attribute to it. My bone scan in December shows no more osteoporosis! Osteopenia, but not the other. All areas showed increased bone density. So it's working. There are reports that says an increased risk for a femur fracture. Knock on wood, I don't have that.
    I'll be continuing on this, but if Prolia is an option, it may be an option!

    As far as your bite. If you had cavities filled, them the filling was not ground down to properly bite. This is quite common, and very easy to fix. Call the dentist, tell them your not biting or chewing properly. They'll ask if some teeth are making contact before others, and the dentist will have you bite down on a piece of carbon paper. He'll smooth the areas down so that you have proper closure.
    I'll warn you that afterwards that may feel a bit odd, especially if you've been off kilter for awhile.

    Consequences of not getting it fixed include TMJ. You don't need that!

    Onward and Upward Mark!

    1. Hi Janice! I've been back twice to fix my bite, and it still isn't fixed. They tell me to wait a few days, then it never gets better. I got tired of going back, but I guess I should.

  3. I was diagnosed with Stage 4 Breast Cancer in December 2012. I had a small primary site, 4 positive lymph nodes but mets on literally every bone on my body. I started monthly Xgeva shots immediately. After one year of three heavy hitter chemo's I was in complete remission - no evidence of disease. Nuclear medicine bone scans showed no signs of osteoporosis, osteopenia or ONJ. Since then I have been on quarterly Zometa infusions.

    In June I had a recurrence of cancer with bone mets to the spine and sternum plus two positive lymph nodes and tumor in the subdermal soft tissue of my back near my armpit. All that said, I am now back on chemo. The quarterly Zometa infusions continue. The cancer is responding well to the chemo and I anticipate another remission. For me, taking biophosphinates has been a very positive experience.

  4. Hi Mark,
    I too am on Xtandi and finally my PSA is starting to go down. Like Glenn my insurance wouldn't cover Xgeva but would Zometa, its streathens bone. Its given every 4 weeks as an infusion thru my port. Had some bone and muscle pain but I read some people ask to slow the infusion down so it take about 45 minutes instead of the 15 it usually takes. I've had no problem so far (knock on wood) with my jaw. Maybe ask if you can switch to Zometa or at-least look it up. Anyway I thought you and I have close to the same thing, I have it in both hips and L3. Let me know what you decide.

    1. Hi Steve,
      My insurance covers Xtandi. I'm not doing chemo, so I don't have a port. It will be a shot for me, if I take it.

  5. Thank you Mark's friends, for you helpful and positive support and information! You are a blessing to Mark and Sharon and to the rest of his family! Mark-I don't know if Janice's suggestion is possible and maybe this info won't make any difference but as an fyi-I have had one Prolia infusion for my osteoporosis and haven't had any side effects. It would be awesome if you could take it instead of Xgeva. Thank you for keeping us up to date. See you soon!

  6. Hi Mark,
    My husband has had Prostate Cancer for 8 yrs, almost 9. Long story but for now I can tell you I would go to Zomata.. Even now our Dr keeps him on it once a month.. We have gone thru all the Chemo treatments, Xtandi , Radium 223, Enzalutimides, Lipton, Zomata and just about everything available..
    It all works for awhile but nothing has been a magic potion... We started with his PSA was 78.5 after his Gp read it as 7.85.. It had already spread out side the prostate into the spine, pelvic bones and collar bone. But now in 2017, they pretty much have told us it is just maintenance time, mostly morphine and oxy's. Monthly Zomata...
    It is not easy to watch my husband waste away.
    I wish you luck in your journey. As I said earlier I think Zomata is a good way to go. If you have any questions please contact me. So many of the years & different treatments have run together.. The first 3 yrs we did not have insurance, but it didn't stop our amazing oncologist from giving him the best treatment available. We finally got VA benefits.
    My husband will be 65 next month. The VA has been exceptional with him. Getting him every treatment that has been available...
    It just makes me very upset that we have not been able to find a cure for this horrible disease that takes life away from men that should not die so young.