I'm tired of trying to come up with creative post titles that say the same thing week after week. Sorry. We got the results of Marye's bone and CT scans yesterday. The results are mixed. In her liver, the main tumor remains unchanged at 6 cm, the smaller tumors have gotten smaller, and the cancer in her spine has grown. I wondered if this is normal (that the chemo would work on some cancer but not all of it), and Dr. Riley told me that it is. Normally, she would keep her on the Xeloda, since it's working fairly well on the cancer in the liver, and boost that with some radiation to her spine to keep that from getting worse. But since Marye was very unhappy with the side-effects of the Xeloda, we went ahead and changed chemo and will hold off on the radiation to see if the new drugs have any effect. Really, since the Xeloda wasn't working on all of the cancer, we probably would have had to come off of it after the next CT scan, anyway. So, two down (chemo drugs, that is.) The good news is, Marye is not feeling any pain in her back from the lesions on her spine. The doctor was surprised by this, and I'm glad, too. If her back does start hurting, she will get more powerful pain meds and probably some radiation, too, to treat that cancer directly. The other good news is that many of the symptoms that Marye was feeling lately have eased, so it looks like the Xeloda was, indeed, responsible for them.
Moving on, Dr. Riley has prescribed Gemcitabine, aka Gemzar as the next round of chemo. It is an infusion that Marye will get for two weeks, then a week off. This is supposedly a very mild drug, so the side-effects should be minimal, and her hair will continue to grow back. She's no longer bald! Also, the schedule is flexible, so she could go two (weeks) on, one off; every other week; etc. It depends on how she handles the side-effects and of course, its efficacy. To that point, there will be a new CT scan the first week of January. So until then, she'll have to go down and get the chemo every week or so. Add in the (still) monthly Xgeva shots for bone strength and the ERCP on Dec. 17 to replace the stent, and it's going to be a busy holiday season. Remember the Xgeva shot is to strengthen the bones since she has cancer in her spine. It's an osteoporosis drug like Boniva. This is not like the Neulasta that she was taking to spur white-blood cell growth in the bone marrow. That drug was for general immune system boost, not bone strength, but it caused a lot of pain in her bones. The Xgeva doesn't seem to have any negative side-effects.
Ok, one more thing. I usually mention the overwhelming fatigue that Marye suffers from. I usually attribute this to the chemotherapy, but with Marye not having any chemo in the past few weeks, I again asked Dr. Riley about this. She explained that this is a condition called Cancer-Related Fatigue and that the vast majority of cancer patients experience it. A little research reveals myriad authoritative links and scholarly research on the condition. The bottom line is, there is no definitive cause. It can come from the chemo, or the inherent pain from some cancers. It could also come from the metabolic drain that the cancer tumors cause --basically, the tumors are robbing energy from the rest of the body, -- or even hypothyroidism. (That last one is something that Dr. Riley will check during the next blood test.) Of course, it could be from a combination of all of these factors. The only treatment strategies are things that she has tried: Ritalin, caffeine, rest, shrink the tumor, etc. Other than that, it's just something that cancer patients have to deal with.
I bring this up because I know that I mention her fatigue every single post. I hate to sound like a broken record, and frankly, who among us doesn't feel tired most of the time? So, I won't mention it as much in the future. But the whole point of this blog is to pass on information on how Marye is feeling, and to ignore the fatigue is to deny a major part of this experience. It's debilitating and not unusual for her to spend a whole day, or two or three, in bed, utterly unable to get up. That is one of the most profound effects of having cancer for a lot of people, and probably the most distressing thing to her. I'm not happy that there really is no medical answer to this, but giving it a name and knowing how prevalent it is among cancer patients at least makes me understand it more -- and that helps. It takes a lot of energy to keep holding out hope that "the next chemo drug" or "upping the Ritalin dose" will ease the fatigue problem, only to be disappointed once again.. So it is now something that I know that we have to accept and continue to work into our lives.
Whew, I wrote a book here, but there was a lot to say. The summary: Marye's CT scan wasn't great, but it wasn't all bad. The new chemo should be ok, although the fatigue will continue. Next CT scan is in early January, ERCP is on Dec. 17, near weekly visits to the cancer clinic for various treatments between now and then. Overall, Marye is feeling ok and sleeping a lot. And she's happy. I think that that is the biggest take-away for me. She's still happy.
