Course of treatment for stage 4 metastatic prostate cancer – the western medicine version as applied to my husband

And now a time out to talk about how M’s stage 4 prostate cancer is being treated.

First, no one has ever told us that M is stage 4. No one ever explained his Gleason score to us (7, though I don’t know even now if it was 3+4 or 4+3), or if cancer was present in all 13 cores of the needle biopsy he underwent (yes). Truth be told, 3+ months into this, and I still don’t fully understand the lingo of prostate cancer diagnosis. I’m not sure it’s relevant, anyway. That the cancer has spread to his bones (bone metastases), which are considered far off organs, is bad and from all the literature I’ve read, and it means he’s stage 4.

The cancer in his bones is in his pelvis, a couple of vertabrae in his lower spine, a few more vertabrae between his shoulders, in his lower ribs, and then there’s this weird hot spot below his left eye, in the orbital bone. The pain he had been feeling in these areas (minus the eye) was due to essentially having broken bones. The bones, themselves, don’t have nerve endings, but they do have a protective sheath around them that does have nerve endings, and when the bones are inflamed–broken–they swell and irritate the sheathing. There is nothing to be done about the pain, it won’t go away until the bones heal, so you just have to manage it. A subsequent visit with the urologist, Dr. Hudnall, taught us that M’s lowered red blood cell count was due, in part, to his bones having been damaged, and those damaged bones couldn’t kick in to produce the red blood cells they’re supposed to supply.

So, the diagnosis is stage 4 prostate cancer with bone metastases. What’s the treatment plan? First, let’s cover what ISN’T part of the plan. M is not a candidate for prostate removal surgery, because the cancer is already outside his prostate, so removing the prostate is pointless. As I understand it, radiation is very selective, only targeting those areas where the cancer has been observed. But because the cancer has spread, there’s no good way to know whether subjecting him to radiation would kill off all the cancer, or if it might miss a spot. Chemo is still an option, because that’s a whole body therapy, but it’s not the right place to start, not until other therapies have been ruled out as ineffective or no longer effective.

In M’s case, the first line of defense is androgen deprivation therapy (ADT), also known as hormone suppression therapy, also known as drain all the fucking testosterone from his body. Why this? Because prostate cancer eats testosterone, which is the male sex hormone, or androgren (by the way, all cancers like sugar, too, but I’ll cover that some other time). So, remove the testosterone–the androgen–and you remove the main food source for the cancer cells. And how do we go about this? Well, there are two places where testosterone is made: in the testes, and then in little bits elsewhere in the body (the latter is the reason that females have testosterone in their bodies, even though we don’t have testes). The vast majority of testosterone is produced in the testes, so the first target of ADT is to shut down testosterone production there. Degarelix (brand name Firmagon) is the fastest way to do this. It works inside of 24 hours, just shuts down all testosterone production in the testes, and drops testosterone to near zero in the body. But it doesn’t do so permanently, it has to be administered every 30 days (apparently men have hormone cycles similar to women, every 28 days or so, but I haven’t done all the research on that, so I’ll shut up about it for now).

The side effects of ADT in general, and degarelix in particular, are numerous and unpleasant. You can read about them here and here.  Every patient will be different, and I can only speak to M’s experience. For him, degarelix caused pain at the injection site (which is his belly) which was intense and persistent, but subsided after a couple of days.

It also knocked him on his ass, wore him out more even than he already was. And it made him very, very emotional. I remember, in the day or two after his first shot, his reaction to something I conveyed to him from a very close friend of ours with whom we were supposed to go on a trip to Mexico City in a couple months’ time. I told M that I had talked with our friend about the trip, and that she and her husband still really wanted to go, but that she suggested we just modify our itinerary and take it really easy. She and I both thought that was a good idea, that it gave us something to look forward to. But M’s reaction to keeping the trip on the calendar was anger and hurt. He didn’t understand how our friend could be so insensitive and thoughtless. Didn’t she understand that he had cancer all over his body, that he was in pain, that he doesn’t even speak Spanish and didn’t want to go to Mexico in the first place (I should note, when we booked the trip–before we knew he had cancer–he was totally on board). I calmed him down, explained the logic, and he relaxed a little, but this was so unlike M. I also remember the Thursday after the first injection–and the “official” cancer diagnosis–coming home from work and finding M in bed, crying. I laid down with him and put my arms around him. And he just cried. He apologized for the tears. But how in the world could anyone blame him? No testosterone, which has to be the weirdest feeling, a cancer diagnosis, constant pain and exhaustion. Fear. How do you NOT cry? Beyond being very emotionally wobbly, the ADT also makes M tired, so, so very tired. He has hot flashes, which can be intense. And his libido is all but gone. It also makes his brain foggy, which makes it so that he’s not always comfortable driving, and I notice that he has to search for words sometimes, there’s an occasional stutter, and he’s forgetful.

In addition to ADT, and in part because of it, M is on bone density building medication. That the cancer has spread to M’s bones means that he’s already experienced bone degradation in the spots the cancer has taken up residence. But just as women lose bone density with age, and more specifically, with a drop in estrogen levels, so, too, do men lose bone density without testosterone. So to manage that side effect, M is on Xgeva (generically, denosumab). Like the degarelix, M gets a monthly shot of Xgeva to help repair/replace damaged bone tissue and keep it from degrading further. His hips are of particular concern, since they receive the full impact of walking and standing.

Just like the degarelix, the Xgeva shots wipe him out, just not as badly. Xgeva side effects can be found here.

Lastly, Dr. Hudnall prescribed M Zytiga (generically, abiraterone acetate). Remember how I said that testosterone is produced in the testes, but also in small quantities in other parts of the body? Zytiga targets the production of testosterone in those other parts of the body. As I understand it, the drug works directly on the pituitary glad. The pituitary gland is sort of like central command for directing hormone production. The pituitary sends messengers out to the parts of the body where hormones of all different kinds are produced, and it tells those body parts, “Hey, make some more of X hormone.” Zytiga functions by telling the pituitary, “Hey, girl, maybe just stop telling folks to make that testosterone all together, m’kay?” When the pituitary follows those instructions, all the testosterone produced outside the testes ceases to get produced. And remember how I said that prostate cancer eats testosterone? Well, between degarelix and Zytiga, in theory, there should be no testosterone in M’s body…if he’s taking both meds.

Which he’s not.

Zytiga’s side effects (found here) scare M, to be blunt. He already feels like shit, and so the thought of adding yet another drug that will make him feel worse is unacceptable to him until all other non-drug treatments have been tried, specifically, homeopathic treatments (i.e. supplements, diet changes, infrared sauna, etc.; I’ll cover what we’re doing on this front in a separate post). So, we have a bottle of Zytiga in our cabinet right now that has gone unopened since its arrival in our house two months ago.

An important note about Zytiga. Up until March of 2018, Zytiga had not been approved by the FDA for concurrent use with drugs like degarelix. Zytiga had previously only been approved for use after degarelix ceased to be effective (which is ultimately what happens with degarelix–cancer is smart, it knows how to adapt and work around the system). But presumably studies have shown that concurrent use of degarelix and Zytiga (or Lupron and Zytiga) can actually help lengthen survival time.

M no longer had blood in his urine when we went to see Hudnall in August. His PSA also dropped from 206 to 16 in about a month’s time. By September, his PSA had dropped to 5.8. During this time period, we began the transition away from sugar/carbs, and conventionally grown fruits and veggies. We ate all organic eggs, fish, and chicken and all but cut out any red meat or processed foods. M eased up on beer consumption and increased water intake. He had long since stopped with Red Bulls, and he didn’t really have a thing for sodas (save for the occasional Mexican Coke). He began taking supplements, starting with calcium and vitamin D3. I also started making this smoothie from hell every morning. Twenty-nine ingredients, if we had everything on hand to make it, but never fewer than 20 ingredients. And there was exercise and everything else M was doing. I’ll cover all of that separately. The point is that we thought we had made changes and were really nailing this.

But in spite of everything, on M’s last round of labs in mid-October, his PSA had gone back up to 33. Hudnall practically begged M to get started on the Zytiga. The words Hudnall used that hit me, and the way he delivered them: “I know you’re still trying to get your head around this, but this is the real deal.”

During this same visit, Hudnall moved M to Lupron injections, which, in M’s case, if he gets on the Zytiga, only need to be done every six months. Lupron is another ADT treatment, another version of degarelix, except it acts a little differently. I still need to research it further.

In summary, then, we started with degarelix and Xgeva for the first three months. As of October, we’re on Lupron and Xgeva, but M is supposed to add the Zytiga. When I asked M if he really would start taking the Zytiga, he said he would, but only after the next round of blood tests, because he wants to see if the homeopathic options he’s undertaken have made a difference. I said I would post more about homeopathy and I will, but for now, suffice it to say, M is taking a boatload of supplements, ozone therapy twice a week (think Lance Armstrong blood doping), vitamin C injections twice a week, PEMF (magnetic pulse therapy), and we’ve now moved to a vegan diet, save for a tiny bit of butter now and then.