July: advised of mets in two lymph node areas and five bone areas. Began 1000mg Zytiga the same day.
After Zytiga (1000mg a day) began my PSA dropped to 0.3, then 0.1. (I haven't had my second Eligard shot yet.)
So here's the first question...
Some of my liver tests area a little off, I can't remember which ones exactly. My "onco doco" thinks it's a minor case of harmless Gilbert's Syndrome, especially since I'm producing slightly more red blood cells (or whatever) than normal. A quick check online seems to confirm this, but I still wonder - are these wonky liver tests likely a result of using Zytiga?
My other question, in two parts...
This may all be my imagination, but it seems like I feel slight pain approximately where a couple of the bone mets are, like the back area of a rib (which may be muscular pain due to the way I sit up in bed) and my hip (which may be because I have a tendency to cross my legs rather than the bone met in the iliac wing of my pelvis). My docs don't think it's related; apparently bone pain is very obvious and that's not the case with me.
I've also had some groin and abdominal pain, mostly indistinct but sometimes sharp, thankfully never terrible or long lasting, exacerbated by colonic "load," and somewhat relieved by getting rid of the load (poop, in other words). These pains have gradually subsided over the course of my treatment but haven't gone away completely. Enlarged lymph nodes? Again, my docs don't think it's related to the prostate cancer.
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It may seem inadvisable to ask these kinds of questions here, but I figure it's like I'm indirectly getting consultations with each of your doctors - one way to save on medical bills!
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DaveBSD
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Congratulations on the excellent response so far! It is unlikely that you would be having pain from metastases that have responded so well to therapy. We all imagine that every ache is due to cancer - your mind is not your friend in this.
Liver enzymes can be way outside of normal (like 5 x) before there is evidence of real liver damage. If you have Gilbert's syndrome and those levels are normal for you, you can comfortably ignore it.
I love good news, Tall_Allen! Thanks for the reply! You've given me a HUGE boost in morale. And yes, you're correct about our minds playing tricks on us. I've become much more aware of every little twinge and quiver my body makes. ("My hair hurts!")
I was never sure if some of the abdominal pain I experienced was related to Zytiga or not, but I started keeping a few bottles of Gas-X (simethicone) around.
Over the years I have had pains that I did not think were caused by gas, but my wife (an RN) said "It IS gas... trust me." Only in the past few years did she (and my daughter) suggest Gas-X, and I have come to think of it as a miracle drug.
Even if the gas or cramping is related to IBS or some food intolerance, the Gas-X may relieve symptoms. I don't know the source of all my pains, but on one occasion it became severe enough that I wondered if I was having a heart attack. This can't be gas! "It IS gas... trust me." It was.
I've had terribly painful gas one time. The first time, I went to the ER, they did the usual tests and came back with, correctly, "It's gas." The next time I had severe gas pains it was in the middle of the night, so I told my (ex) wife I'd drive myself in to be sure. That time it was... gall bladder. The third time I had gas so bad I literally couldn't speak - I could barely croak out any words. I was actually worried it was a heart attack, but in the years since then all my cardiac tests have been good.
Over the few years since dx, I have often wondered if this pain or that pain was a met. It used to really scare me. Now, I just shrug... maybe it is, maybe it isn't. I have an incurable disease that ultimately WILL cause me some real pain.
A recent experience with severe back pain (not believed to be PC-related) gave me some new insight into pain: that which wakes you up from a sound sleep, or keeps you from getting TO sleep, is what I will refer to as "real" pain. It is a more objective definition that just "how much does this bother you?" If I am in a bad mood, EVERYTHING bothers me, and if I am high on life then virtually NOTHING bothers me... except the kind of pain just mentioned. That brings me down, in a hurry.
So my new attitude, when I can maintain it, is to treat my little aches and pains as minor annoyances and when they occur, be very grateful they are not "real" in the sense I've defined. Every day, even with minor pain, can and should be one where I can experience some moments of gratitude for having made it this far, with a wife and kids that are all relatively happy and healthy.
When I first went on Zytiga, I had my liver enzymes (ALT and AST) checked every few weeks. They rapidly went out of tolerance (11 times normal). Check with your onco to see if (s)he is monitoring them.
Yep, I have another lab test coming up soon. I'm able to access all my records online - labs, radiology, even physician notes - so I keep track of all that, too.
My liver numbers exploded to 5 times normal. (ALT & AST). I stopped Zytiga completely for 7 weeks and restarted at 1/2 dose. After my liver numbers were normal I went to 3/4 dose and stayed there. Yes, Zytiga can cause your hair to hurt. LOL.
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