Hey all, back again.
It's been a quiet week, which is good, because we need quiet weeks. I think we all need quiet weeks, but when you're in our position, as I know many, many of you are, quiet weeks are awesome.
For those of you who read my last diary (hi to you all!!) Kim is doing much better. Yes, she's tired, and weak, but ultrasounds showed no cardiac damage and no lasting ill-effects, so we seem to have weathered that storm. Kim hates enforced rest, but when getting up for a cup of tea leaves her feeling like she's just completed an Iron Man competition, she reluctantly accepts that, perhaps, she has restricted choices as this point.
Thursday's treatments were prefaced with blood tests and scans, and Monday was Results Day, which showed.…
...well, not much. Which is amazing news after weeks of things getting progressively worse with each passing day. As things currently stand, things have gotten decidedly not worse, which is wonderful. Essentially, her cancer has... stopped for now. It's not growing. It's not spreading. It's not attacking. It's still there, still horrifying bright blobs on the scan, but it's kind of in shock, right now. And it's all thanks to our new friends, Gemcitabine and Docetaxel.
Long words. The thing you knew about when you started treatment, but nothing quite prepares you for how much hope you attribute to these long words, ending with "-imumab" and "-taxel" and other awkward combinations.
So, in our case, what do they actually do? I'm of a scientific bent, and as much as I trust it, the ovcasional hand-waves of modern medicine leave me unsatisfied. I'm not cell-biology-smart enough to understand everything about reaction pathways and dynamics, but I know enough to follow the argument. So here now is a very brief and very wrong (I'm sure) summary of Kim's treatment protocol, humorously entitled;
ADI-PEG 20 in Combination With Gemcitabine and Docetaxel for the Treatment of Soft Tissue Sarcoma For Dummies (Mainly Me)
Cancer is weird. We all know that. For a long time, we didn't know how weird it was, and had this vague idea that except for the immortality and malignancy thing they were more or less ordinary cells. This meant our approaches were based on killing the cells in simple ways - blast them with radiation or poison the hell out of them.
A while ago, we began to notice that cancer cells were quite profoundly not normal cells; they had quirks that were basically fairly unique, and this led to the rise of targeted therapies and immunotherapy, latching on to key differences between cancer cells and their normal cousins. The Holy Grail was the search for some way they differed that would allow you to hurt them where they lived; find some mechanism unique to the way they worked that you could exploit or turn against them.
Put simply, Kim's trial is a test of one of the first of these methods, the so-called metabolic treatments. The details are really interesting, but at it's its most basic, Kim is being given an enzyme called ADI-PEG 20 that shuts down one whole pathway that the cancer cell uses in its metabolism. This forces it to find other methods to get its food, and those methods make it far more susceptible to two rather nasty chemotherapy drugs, Gemcitabine and Docetaxel.
Gemcitabine is a mean one: it breaks stuff. Specifically, it breaks the stuff the cell needs to survive, concentrating on structures called "microtubules" which cells use to transport pretty much everything through the cell, like a highway system. No highways, no transportation, the cell begins to die.
Docetaxel is the quiet menacing one. It interferes with the cell's ability to reproduce, shutting down the mechanism by which metastasis occurs.
Gemcitabine and Docetaxel have been around for a little while, and have had a decent track record, but their combination with ADI-PEG 20 is something new and interesting. Individually or in some combination, the cells will be damaged, prevented from multiplying or killed. All three together make them each more powerful, and reduce the chance of the cell adapting to the therapy almost nil. In combination, the cell is choked, beaten and castrated. Then Kim's immune system sweeps in and the rest is history.
In theory, at least. So far, it seems to be doing something. I'll keep you all posted on that. At this point, no news is great news, and we needed the breathing space.
And now comes the awkward part of the diary... Our GoFundMe is here, and we have our PayPal at churlygurl at gmail dot com. Thanks to everyone's amazing kindness and incredible efforts in getting the word out, our goal of $2500 has been reduced to $1650! Anything you can do to help, by reposting, retweeting, throwing paper airplanes with the link written in lipstick at your coworkers' heads would be appreciated. Well, perhaps not by your coworkers…
We're making progress. Peripheral medications are still expensive, and the polar vortex has conspired to make things on the getting-the-house-done front even more difficult, but we still have hope, and with your help, we'll have a home and a life, too.
Thanks to absolutely everyone who has helped in ways you may think small, and ways we think big; there are no "small" gestures for us. Every virtual hug, every message of support, every tweet or post or "hi" makes a difference to us. We're getting there, day by day, and you are all a part of it, whether you like it or not!
Thanks for listening
Callum and Kim
Special H/T to WYgalinCali, njm5000, BMScott, ColoGal, wilderness voice and all the Villagers, helpers, promoters and donors, without whom none of what we have achieved so far could have happened. Without your help, Kim probably wouldn't even be in this study in the first place!