The Beat Goes On

Met with my oncologist today. The results of my last PSA test came in – a little over 50. Bad news. At this point I’m likely to start a on a new drug, either Zytiga or Xtandi. First, I go off Casodex, and we see if I’m in the 20% of men whose PSA drops (for unknown reasons) after coming off Casodex. If so, we’ll wait until it rises again.

Note there’s nothing magic about 50. The accepted standard of care is that Lupron/Casodex are in failure after the PSA rises for three straight months. By that measure, I have already entered failure. My treatment plan has been different from the norm, because I’ve had so much trouble with depression.

Due to side effects, I’m leaning towards the Xtandi when the time comes.

I’m not sure what I thought I’d feel like when I reached this point. Maybe relief, because I no longer had to deal with the anticipation. Instead I feel mostly nothing. It seems like just another step on the path to death. I don’t mean that in a morose way. Death seems more and more like a natural part of life to me.

 

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Oncologist Visit

Met with the oncologist today. My PSA was up about 10% into the mid 30s. He told me that means the Lupron is slowly failing, which is good. He wants to keep me on Lupron (and Casodex) until the month to month jumps hit 20% or my PSA exceeds 50.

At that time we’ll add Zytiga to the regimen and drop the casodex. I thought that I’d be done with Lupron, but that’s not the case. I’ll still get Lupron every month.

I’m a little concerned about going off the casodex, since I feel it was a major factor in controlling the depression. He thinks I just got used to the Lupron. At any rate, if the depression returns, I’ll propose we add casodex back to the mix and see what happens.

I also asked about travel next year, specifically in about seven months. He said there shouldn’t be any problems making the trip, good news!

I’ve started to come to terms with my death likely in under two years. The panic attacks are largely gone and the anxiety is much ore manageable. Interestingly enough, the anxiety and panic is almost always the worst right before I go to sleep. I think I just don’t want the day to end and to officially one day closer to death, but who knows.

An Odd Meeting

Met with my oncologist yesterday. I told him I’d decided the Lupron was failing and that’s why I was freaking out. Strictly speaking I need one more month of an increased PSA for it to officially fail, but I’m convinced that will happen. He mentioned that his next recommended treatment would be Zytiga, which stops all testosterone production, including from the adrenal gland and the cancer itself. I was kind of expecting him to say the Lupron hasn’t officially failed so let’s stay with it. I asked him point blank if he thought the lupron was failing. He dodged the question and said let’s wait two weeks and make a decision then about what to take next, but he penciled in Lupron.

The other thing that came up was my anxiety which is also causing back spasms and insomnia. I met with my GP about a week and a half ago. He said the back spasms are likely the result of anxiety and one of the meds I’m on. I can’t drop that med so we decided to change the times when I take my drugs. That helped for a couple days and then everything was back to where it was.

The oncologist put me on an anti-anxiety pill regimen and we’ll see how that goes.

As far as how I’m doing, the truth is not very well. The anxiety and the back spasms are driving me crazy, mostly the back spams. My back clenches and releases roughly in time with my breathing. It starts about 4-5 in the afternoon and usually lasts until 10-12 in the evening. I’m hoping the new pill will help.

Next meeting is in two weeks with the oncologist to decide what treatment path is next.

Prostate vs. Other Cancers

As you know from my acceptance post, I’ve largely come to terms with my fears about cancer. That’s allowed me to start reading a number of other blogs from people who have cancer. There are some striking differences when one compares prostate cancer to most other cancers, especially stage IV cancer.

As I understand it, most cancers love to eat sugar. Prostate cancer loves to eat testosterone. Drugs like lupron and casodex either stop the production of testosterone or make it “indigestible” to prostate cancer. As soon as you’re diagnosed with stage IV prostate cancer, you’re almost guaranteed to go on one of these drugs.

When prostate cancer metastasizes and becomes stage IV, it often picks bones to infect with the spine being a common choice. The current standard of care, according to my oncologist, is to leave the cancer untreated until bone pain starts. At that time, radiation is used. (I decided to aggressively treat the spots that appeared on my spine and had radiation before bone pain started.) Surgery isn’t a viable option. That’s why you rarely hear of someone recently diagnosed with stage IV prostate cancer is headed to surgery.

Hormonal drugs do a very good job, at least initially, of removing prostate cancer’s food source. The cancer’s growth is greatly slowed. Eventually, prostate cancer cells develop the ability to make their own testosterone. On average this takes about two years. If the prostate cancer is detected before it’s symptomatic, taking lupron or casodex may provide a significant asymptomatic period of time. One must still live with the side effects from hormonal drugs, obviously. (This is precisely where I am right now. I’ve been on casodex or lupron for about 9 months.) When these hormonal drugs fail, there’s now another drug to use, zytiga. It suppresses testosterone from the testes, the adrenal gland, and the prostate cancer! It appears to significantly extend survival, perhaps by as much as 18 months. It’s awaiting FDA approval as I write this. It’s horribly expensive. After zytiga fails, chemotherapy is the final choice. The point of all of this is that, unlike other stage IV cancers, chemotherapy may not start until years after the diagnosis. This is the good news part of stage IV prostate cancer. If caught early, you have a fair amount of time to get your affairs in order. It also leads to some awkward situations. When folks, who know I’ve had stage IV cancer for 10 months and haven’t seen me since the diagnosis, finally do see me for the first time, they’re shocked. I have all my hair, I’m still at a good weight, and I look perfectly healthy. Most assume there was either a big mistake in the diagnosis or I’m in some sort of miracle remission.

Finally, there’s the difference that has to do with chemotherapy. In most cancers there’s a hope that chemotherapy will produce remission. That’s not the case with prostate cancer. Remissions are very rare. My oncologist tells me that chemo can extend life on average about 1 year more or less and then it’s over. With many other cancers, enduring chemo is made easier by the hope of getting the gold ring of remission. With prostate cancer your life is extended, but you’re under chemo’s thumb for all of that extended life. That’s why  prostate cancer patients may decide to forgo chemo. (I’ll probably try it, but expect to opt out.) Hopefully, medical advances will provide drugs that can either produce remission or at least reduce side effects.

Update on Zytiga

Zytiga‘s official “on label” use is after chemotherapy fails.  In an earlier post I referenced some clinical trial results from June that indicated great promise for use of the drug before chemotherapy. Johnson & Johnson, who makes the drug, is now seeking formal approval from the FDA for Zytiga’s use before chemotherapy. The FDA sees enough merit in earlier use of the drug that it’s fast tracking the approval process. That does not mean it will necessarily be approved for earlier use.

As I understand it, a doctor can prescribe it now for use before chemotherapy, but that’s considered an “off label” use. I suspect some doctors will not prescribe it for early use until FDA approval is granted (assuming approval is granted). If early use of the drug is of interest to you, be sure to discuss the current lack of approval in detail with your oncologist. Note the Zytiga is horribly expensive, $5,000 per month at this writing. Your insurance company may balk at covering it before FDA approval. Your oncologist may be able to convince them otherwise – it’s worth a try if you’re interested in this route.

FWIW I’m not yet at the point where Zytiga would be prescribed, the casodex is still working. If casodex were to fail before the earlier use of Zytiga is approved, though, I would want early “off label” use. That’s just for me – I am not suggesting it’s right for anyone else. Metastatic prostate cancer is complex and manifests itself in a variety of ways. Work closely with your medical team to make a decision that’s right for you and your case.