Trials and Tribulations

Kristine's mother left Philadelphia a week ago this past Friday. It was great having her in town for a couple of weeks to help. Kristine enjoys having her company and I enjoy getting a little break from the routine. I took this past week off from work to cover some gaps we had in our schedule of weekday helpers, spend some time with Kristine and generally try to recover from burnout. You don't realize how fatigue you really are until you slow things down for a while.

There has been a lot of news since the last post. A couple of weeks ago Kristine had to go into the hospital for another cardioversion to regulate her heart rate, which had again accelerated to double the normal rate. The procedure was relatively quick this time around, only requiring a day long out-patient visit. Kristine had another seizure while she was home in bad, this one lasting longer than the others, a full two minutes. Even more worrisome is the fact that the time lapsed between seizures has shortened with each episode -- this one occurring less than a month since the last.

Kristine got the results back from her latest scans. Generally speaking all of her existing tumors have remained stable or increased in size. There are also several new lesions that are cause for concern, but without immediate nor obvious action plans stacked against them. There is one very small, new tumor in the frontal lobe of Kristine's brain (which controls a number of complex cognitive functions such as decision making and memory). Our neurosurgeon is addressing this new lesion with our Oncologist. However, he initially felt that the best course of action was to wait and revisit the mass in a month when Gamma Knife radiation would be considered depending on its progression and size. Additionally, it appears that Kristine's disease has spread to her adrenal glands (those that sit on top of the kidneys). This is concerning for a number of reasons but chiefly because of the proximity to the kidneys and the indication of a broader spread of disease throughout the body beyond her upper thorax.

Kristine is still in a lot of pain from the spasms in her back. And while the pain in her left shoulder blade has subsided, it has been replaced with a sharp pain throughout her right arm stemming from swelling in the lymph nodes in her armpit and shoulder. The pain in her back and arm are causing her the most discomfort, which is only partially alleviated when she is resting in bed.

Kristine has started her new holistic treatment. It is too soon to tell whether it's having any beneficial effects. Though Kristine has noticed some swelling at many of her cancer sights (for example, the several tumors on the top of her head). The treatment is known to cause swelling as it affects the cancer cells, but only time will tell whether the treatment is impacting the tumors' size.

In the meantime, we are looking into a couple of clinical trials. We are skeptical of most trials. Even those in second or third phases of study often have success rates below 40%. So when you consider that only half of the participants in the study are given the actual drug (the other half are administered a placebo to be certain that it's the drug and not some other factor producing the same results) the chances of seeing any success from a study are lowered to less than 20%. Additionally, "success" in sarcoma trials usually just means slower progression not reversal of disease. So essentially there is less than a 20% chance of seeing your disease slow down and a greater than 80% chance of being exposed to a new unproven treatment that could prove to be more harmful than doing nothing at all. The early results have to be pretty compelling for us to go down that path.