August 5, 2009

• The Lowdown

  Posted by Stephanie 10:15am CST from the apartment Houston, TX

  Today is a new day, and I thankfully awoke feeling more upbeat than yesterday. Time for the lengthy scoop on the change in my treatment plan.

  I had my CT scan eaaaarly yesterday morning, and was scheduled to see Dr. Benjamin at 2pm. Of course, if you've followed this blog, you know that he tends to operate in his own time zone (known as B.S.T.--Benjamin Standard Time), so it was actually about 3:30 or so before he peeked his head into the door of my room. As soon as he did, I knew it was bad news--he's fairly easy to read, and the look on his face was not one of relief. He sat down, brought up my scans on the computer and explained that the nodule in my lung has grown from 1.2 cm on the PET scan a month ago to 1.7 cm on the new scan. Not doubled in size (thank goodness), but that amount of growth is what he would expect to see if the chemo wasn't working. I immediately asked if this meant all the methotrexate I had in the spring was for nothing. He said that could certainly be the case *sigh* or it could have worked then, but whatever I have in my chest now may be resistant to it. No way to know for sure. I was able to see the comparison between the two scans, and also take a look at the rib spot, which has not changed at all. If there's good news to be found, it's that there still is only one single lung nodule (these things usually recur in clusters).

  I asked Dr. Benjamin what his next plan was--he had spoken to Sammy and I back in July about a couple of other chemo combinations/clinical trials. He said that at this point, my body could probably tolerate Ifosfamide--the chemo agent that has proven so effective for me in the past--but that I still might not be able to take more than a couple of rounds, which wouldn't be enough to do the job. He said that since there are some other options, he'd rather save that, and keep giving my kidneys time to rest in case we do eventually have to go back to it. Right now he'd like to try a combination of two chemos--Gemcitabine and Docetaxel. The shorthand name for the combo is Gemtax. Individually, the primary indicated use for each of them is to treat carcinomas (breast and pancreatic cancers, for example), but has been used in combination to treat soft tissue sarcomas. Dr. B said that the Gemtax combo is not usually as effective as methotrexate, but that he has used it successfully for osteosarcoma patients, and that when it works, it works really well. I'm hoping that since the chemos typically used for osteos (Adriamycin, Cisplatin and Methotrexate) haven't worked for me, that maybe I'll have luck with this. At this point, we're getting to the bottom of the list, which of course has me really freaking out, and this neeeeeds to work!

  Anyway, here's how a cycle of Gemtax works. It's outpatient, which is great. Day 1, I will get an infusion of Gemcitabine, and that's all that happens for the first week--no daily labs (no labs at all that week), and no special medication. It's side effects are mild, and thankfully doesn't usually include nausea or vomiting. One week later, on Day 8, I'll get another infusion of Gemcitabine, and an infusion of Docetaxel. Then the third week of the cycle is the recovery week (bloodwork twice a week for the 2nd and 3rd weeks of the cycle). Docetaxel is the nastier of the two chemo agents, and for the second week of the cycle, I've been told to expect extreme, EXTREME fatigue--can't get out of bed or even lift your arm kind of fatigue. Oh goody. That's the main side effect, although Docetaxel is also known to cause severe adema (fluid retention/swelling), like what I dealt with last spring. Because of that, people on this regiment take three days worth of steroids on Day 7, 8, and 9 of the cycle (the day before, day of, and day after the Docetaxel infusion). It's double the dosage that I was taking in the spring (oof), but Dr. Benny thinks that since I'll only be taking them for 3 of the 21 days each cycle, I shouldn't have as much of a problem with them. Other minor side effects from this chemo combo include a chance for mouth sores, and oh yeah, I'll lose my hair again. Guess I should go ahead and cancel the haircut I have scheduled for next week. My immune system and counts shouldn't suffer much for the first couple of rounds, but eventually Dr. B thought they could start to drop, especially my platelets. We'll do two rounds (six weeks total) then rescan and see if it's working.

  I also took some time to question Dr. Benjamin about any complementary or alternative treatments that might be effective. My father has always been a big believer in natural remedies, vitamins, etc., and has been researching things to help me ever since I was first diagnosed. He's also not a fan of western medicine, more specifically the hospital/pharmaceutical industry in this country. I don't believe I've ever blogged about his strong opposition to my current course of treatment before--it's a touchy and painful topic for me. He of course loves me, and wants me to be well, he just wishes I'd go about it another way. He's given me several books and articles about alternate treatment theories (most of which occur outside this country), but in all that reading, there's never been one mention of those treatments used successfully for osteosarcomas. I asked Dr. Benjamin about several of them specifically. Dr. B said that he was aware of all of those, and that they in fact have done clinical trials using many of them there at MD Anderson. One of them, hyperthermia (heating the cells of the body high enough to kill the cancer) has shown some success for soft-tissue sarcoma, but no luck for the bone versions. Unfortunately, conventional chemo and surgery continue to be the only proven options for my type of cancer. He assured me that if there were something else that could help, he'd work to make it happen. I will still continue to take vitamins and supplements, as I have all through my treatment, to help my body cope with the treatment and keep me as healthy as possible during this. I truly believe I tolerate things so well because of the attention we've paid to my nutrition, exercise and immune system.

  I told Dr. Benjamin I had hoped to be home next week, since my 30th birthday is Friday, 8/14--Ang was going to come up from NC for the big event, and I wanted to be able to celebrate with Sammy and my entire family. Since the infusions for this regiment are spread out, I wasn't sure how getting home might work. Dr. B said that I would need to stay in Houston during that nasty second week, so that they could monitor me, but if I wanted to go home between the Day 1 and Day 8 infusions, I could. Since we're changing regiments, they have to get insurance approval, so it's looking like it will be early next week before we can even get started. Right now, our plans are to get the Gem infusion on Monday, fly home Tuesday, and then return to Houston on Sunday, 8/16 in preparation for the Day 8 infusion on 8/17. Driving would be cheaper, but then we'd be in the car for two days home and two days back, with only two days at home, and that makes no sense. I'll be able to be home for my birthday, and then return for weeks two and three of the cycle. I could again come home the 3rd week of the cycle, but that much travel just gets too expensive. The Gemtax combo is not considered extremely high dose, and is used far more commonly outside of MD Anderson, so there's a good chance that after we learn if this is working, I might be able to get this regiment at home with Dr. Romer. How nice that would be.

  There ya go, that's the lowdown on the new treatment plan. I'm always nervous about starting a new regiment, especially when it contains side effects that I haven't dealt with before (like this awful fatigue!). It's just hard to know what to expect. Emotionally, I'm of course really upset to learn that the MTX didn't work. I don't like thinking that I may have gone through six cycles of that last spring for nothing, and I certainly don't want to think that this new combo might not work either. I can't help but to have those thoughts, though. For the first time since all of this started four years ago, I'm starting to be really afraid about my future. Don't worry--I certainly haven't given up, and I'm still gearing up to fight this with everything I have. The right frame of mind is crucial! More than sad, or scared, Sammy and I are angry. We're tired of how much this disease has taken from us. I hate that we have to be apart when we hear news like this. That's the time where I need to lean on him, and vice versa, and here we are 1100 miles apart. I won't lie, it sucks hardcore. I know he feels what he's doing with the Livestrong Foundation is even more important now than ever before. His 100 mile ride in Philadelphia is coming up. I was hoping to be able to fly out there for that weekend with him, but now that falls at the end of my super-fatigued week, so it doesn't look like that'll happen. I'm glad there will be future rides of his that I can go see!

  I've probably forgotten something from yesterday, but I think that pretty much covers it all. Sammy and I appreciate the multitudes of prayers and show of support that we continue to get. I know that we will find the strength to continue through this, and that I will one day be able to look back on this as a chapter of my life that was difficult yet life-changing in positive ways too.

  Mom and I are off to pick up some stuff we need around the apartment, and grab some lunch. Hopefully we don't melt in the 100 degree heat (105-110 with the heat index). Adios for now!

  --Steph

  • 1:08 pm
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