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 January - February 2009 Post Book Essays "A Hazy Shade of Winter"
- February 4, 2009 "A Hazy Shade of Winter" - February 4, 2009 It seems that January slid under the radar screen, just a "hazy shade of winter" as Simon and Garfunkle used to say. This new treatment has been very challenging, but the dilemma about any hesitation as to staying on it is that the first scans showed that it is working, and working well! I had gone to Nashville at the beginning of January after two miserable rounds of the drug ready to bail out of the study and ask for some other alternative. But when we got the CT results back and saw how dramatically the trial drug was already attacking the cancer, I was ready to try to continue. Dr. Burris reduced the dose. Despite premedication with Kytril and dexamthasone, I still had a night of vomiting the first night after treatment and just slept my way through the next 36 hours. The lower GI stuff that had plagued me was more manageable this past time, not pleasant but more manageable. I saw my own local onc. two days after treatment and we discussed my problems. First of all, he sent me to the chemo room for a nice big bag of IV fluid, which perked me up. He also gave me a prescription for Reglan, which is sometimes used in diabetics who get nerve problems that cause a kind of weakness or paralysis of the lower GI tract. The medicine sure worked for me! Kaboom! The second time I needed to take it, I took a half dose and did fine. I had a number of other days of pretty severe nausea and one other of vomiting again, on day 11 after the treatment. Go figure. The day I was due to go back to Nashville this past Monday was one of the worst, with Steve and I deferring the decision right up to the minute we took the suitcases out the door. When the nausea sets in, Atavan and Anzemet don't even knock it back completely. I just have to wait it out. So, this drug is looking like it's doing the job. I'm just getting some backwash into my system, when this little monoclonal antibody is supposed to be delivering everything right to cancer cells and only to the cancer cells. Dr. Burris calls it "collateral damage" (vernacular no doubt leftover from his residency days at Brooke Army Hospital). He's still calling me the poster child for Phase I Clinical trials, so I've got to feel encouraged. I'll be eager to see how this fourth round goes (I took it Tuesday). We medicated the heck out of me to head off the nausea and I have made it so far without tossing my cookies. I'm eager to have the next CT scan, which will occur in three weeks. Wouldn't it be cool if I could get a full remission (at least by scan evidence) for the first time in five years? It's worth a try, so long as we can all monitor and ride out the side effects. My bloodcounts are holding up decently, so we're pressing on. We'll keep you posted.
Adjust, Adjust, Adjust - December 31, 2008
I started the new drug combination in Nashville on November 25. The theory behind this trial is intriguing and promising. A chemo agent in the Taxol family is linked to a monoclonal antibody that homes in very specifically on a receptor site on the cancer cell. The monoclonal antibody is the transporter. I envision a pod sent from the Mother Ship to the surface of a hostile planet. Inside the pod are the agents to be deployed to take care of the bad guys on the planet. The challenge apparently for the scientists up to now was getting the pod to open and let the good soldiers out. With this drug combination, they've seemingly figured out how to open the doors and get the chemo where it needs to go, once the surface of the cancer cell is reached. I've had some adventures with this new approach as I've taken the drug twice now, once every three weeks. With the initial dose of these two drugs (which make numbers 20 and 21 in my laundry list of cancer drugs I've tried), I experienced something I had never had before: vomiting! I also had a great deal of pain. I couldn't help but wonder if what I was feeling were the first inklings of the effects of the drug on all the places my cancer is. We were staying in Nashville and had been given an extra day at our Hope Lodge, in case we needed it. After the nurse in the infusion area got me drugged up and the vomiting stopped, we decided it was smarter just to stay the extra night and rest and drive home to Chattanooga the next day. As the evening progressed, a frighteningly familiar scenario began to evolve. I started to have more pain that was not well-controlled by the meds I was taking, and I had more vomiting. We had vivid memories of a night so similar just over a year before, when I ended up hospitalized in Nashville for nearly a month. For many reasons, we have sworn we would not be in that position again if we ever had any kind of choice about it. For one thing, just the wear-and-tear of being 150 miles from home and having family members shuttling up and down the highways and Steve apart from everything in our household was utterly exhausting, even without all the medical melodrama. So, at about 2:30 in the morning, we turned to each other in bed and said, "Well?" It only took a moment to agree that if I didn't show some significant improvement in the next half hour, Steve would pack the car and we would head back to Chattanooga, to the ER of our home hospital, Memorial Hospital. Therefore, we found ourselves pulling onto I-24 at about 3:30 a.m., pointed for Chattanooga, where I was admitted and kept in the hospital for three days, getting my pain and vomiting under control. The worst part was being stuck in the hospital over Thanksgiving, missing my favorite family holiday and having to deal with cubed hospital turkey, sticky dressing, and yellow gravy It generated more than enough sympathy from our kids, however, that we were happily overrun with great leftovers when I got out of the hospital. The Taxol-like component of this drug combination has proven to be a challenge. Week three after my first round of the chemo, my hair began coming out again, including eyebrows and eyelashes. I haven't been subjected to the typical kinds of neuropathy that often come with Taxol, that pins-and-needles feeling in hands and/or feet. Where it has seemed to hit me is definitely in the gut and also, I think, in the bladder. Weird. My doctor in Nashville says they are seeing a lot of constipation and belly pain. More about this lovely subject in a minute. He was more surprised about my description of the bladder thing. Now, as an almost-old-lady, my bladder function is not Olympic grade to start with. On this drug, however, I have no sensation of fullness or desire to void. I have to remind myself, "Oh, it's been six hours or so since I went." The muscles don't seem to get the message. The intestinal part of the neuropathy is proving to be a really unpleasant side effect. Since I'm on Oxycontin anyway, I was dealing already with finding a balance between taking the prescribed amount of narcotic and offsetting it with an adequate amount of senna and other helpful stuff (washed down sometimes with a glass of prune juice). Before this new chemo, I had that pretty much figured out and managed to keep things in balance. With the addition of this new chemo, all old bets are off. With the neuropathy effects on my belly, I get belly pain and then absolutely no communication between the nerves and the smooth muscles of my GI tract, saying, "Move it along, move it along." Nothing. I feel stuffed to the gills. I'm tired of thinking about poop. I'm using Miralax, prune juice, senna, stool softeners, dulcolax, Milk of Magnesia, and even Magnesium Citrate Aye, yi, yi Steve is helping me to be scientific about this, trying to find just the right combination to establish a successful routine and not be so miserable day after day. We haven't figured it out yet, and this side effect may be the deal-breaker with this trial. The only other side effect is sleepiness. I'm craving sleep and could sleep around the clock. I have to make myself get up and keep moving. On the bright side, I have a little "weather vane" that we watch to see how I'm doing on any given treatment. When my cancer is active and on the move, I get a little bubbly place in the center of my chest, right where the original tumor was. During the fifth week after my last treatment of the previous drug and before I started the new trial, I got two raised, red, knotty lesions in my little place. After I started the new trial, the bubbles got smaller, dried up, and scabbed over. They're gone now! I get a scan on January 5, so I hope that we'll see good response from the other cancerous places that the CT scanner seeks out. In the meantime, we're fighting the "Poop Wars." At least I'm here. This has been a tough couple of weeks, days that make me look with some envy at folks just enjoying their food and taking normal bodily functions for granted. I'm feeling discouraged and, frankly, old and frail. Just pray for me to keep my fight up!
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As
this year winds out its last few days, I can't help but reflect
on where I was this time last year and what the year has held.
Thanks to the availability of clinical trials, I have been able
to achieve a partial response to the experimental drug I took
for most of 2008. It saved my life and gave me an acceptable
and gratefully received quality of life that made 2008 a gift.
As the year went on, the effectiveness of the drug began to diminish,
which is almost to be expected at this point in the long history
of my cancer. When I last wrote, I was dealing with pain and
the prospect of beginning another clinical trial, hoping that
another drug under testing might prove helpful.