So I realize I say this a lot these days, but wow, has it been a while! I thought I would have an update sooner for you but the month of October was pretty much one I'd like to just glaze over. Actually, between the surgery and the drugs, I pretty much did!
The Delaney trio went to Disney and Universal Studios the last week in September and, while it was a good vacation, it was hard for me. The cancer wasn't a problem, but the lymphedema proved challenging this time around. My feet took a beating and so walking around became difficult. All in all a good time, but the last one for a while. The next vacation will involve a lot of sitting. Preferably on the beach. Sean and Kat can figure out something else to do while I tan it up.
Our return from vacation marked a month of trials for me. The day after we got back I went in to Fox Chase for a biopsy of my spine, then two days later I had treatment, then three days after that I went in for a lung surgery called pleurodesis. The surgery involves inserting a chest tube, in my case in both pleura (the lining surrounding the lungs), and then draining the fluid in there and inserting a talc powder to irritate the pleura lining so they adhere. The chest tubes are left in for 48 hours to make sure all fluid is drained, and then you're sent home with a lot of drugs. If successful, the pleura seals so that no fluid ever builds up again. There is no downside, other than it being a major surgery, in sealing the pleura. The fluid doesn't go anywhere else. It just doesn't develop. I'm sure there is some limit to the lung capacity after the fact, but it is so minimal that, in people who choose the procedure for valid reasons, it isn't even noticeable. So my surgery was mostly successful as far as the lungs go. The left pleura seems to have completely sealed. The right pleura has two pockets of fluid that don't seem to be sealing completely. The amount of fluid in there is minimal compared to the two liters a week I was having drained prior to surgery, but it's frustrating having it there at all. At some point it may need to be drained, but then, it may not. Hard to tell.
The biggest problem from surgery was that my breathing was getting worse, not better, as I came home to recover. Long story short, after two follow ups with the pulmonary oncologist, it was found that I had fluid around my heart caused by, we believe, inflammation from a reaction to the talc. So here's the kicker - the surgery is supposed to induce inflammation so the pleura linings adhere, and treating the heart with steroids or NSAIDs would reduce that inflammation, so I went 4 weeks with this trouble before my doc, my own oncologist, called me and said, "Enough is enough, I'm calling in a steroid." I love her. It had been 4 weeks and if the surgery hadn't worked by then, chances are it wasn't going to. Too much fluid had built up in the pleura at that point for it to seal. I don't think the pulmonary doc was thrilled, but I didn't care. I couldn't walk up a flight of stairs. I couldn't pick Katherine up from the bus stop. I couldn't walk 50 feet without needing a break. After one dose of the steroid, I was able to walk around with Kat on Halloween and go trick-or-treating. After the weekend, I was walking up the 3 flights of stairs from my living room to my bedroom without needing to stop. It has been a week and a half and, while I'm still short of breath and can feel the pain around my heart indicating there is still fluid there, it is so much better than it was before. I have another week and a half on the steroid and I'm hoping the treatment I have scheduled this Friday doesn't make the fluid worse, as it did in October when I had my last treatment. If the steroid doesn't take care of the fluid completely, I either live with it (as long as it's not putting pressure on my heart) or I go in to get it drained, which is not a fun thing. I don't want another hospital visit. I don't want another incision and I don't want someone sticking a catheter into the lining of my heart. I don't care how much experience they have doing it.
So now that I'm doing much better, we're back on the treatment track, although a modified schedule both so I can continue to recover and make it through the holidays while enjoying myself. I have treatment Friday and then not again until the first week of December, when I'll also have my next CT. At that point we can determine if this treatment is really working and make a plan from there. My biopsy results on the spine showed nothing new, and the point of them, which was to get biological testing through Memorial Sloan-Kettering, proved invalid. Turns out they can't do biological testing on bone. Sigh. We're still waiting on the results to see if the bone mets are HER2 +. If so, I would go back on Herceptin in addition to the chemo I'm on now, and potentially tackle everything at once. I'm almost hoping for it, since it will give me an actual treatment option that will cover everything going on with the cancer. It would explain why the bone mets grew as the skin lesions regressed. As I recover from the surgery, the frustration of the cancer itself grows, as I still feel like it's a chronic condition rather than a death sentence, being able to go and live life fairly normally. Having said that, this is potentially my last treatment option before we start grasping at straws, so let's hope it's working.
So because Memorial has nothing for me and Penn doesn't seem to have anything for me, we're expanding our options. I'm going to reach out to Johns Hopkins to get on their radar, and I'm in the process of sending everything to the National Cancer Institute (NCI), who handles many of the clinical trials in the country. Both are based in MD, so not too far if I get into a trial or treatment plan there, and really, where is too far when you're talking about life? So between the holidays and getting in to those centers, it'll be a busy couple of months.
Two things came up over the past month or so to keep an eye on, though. One is the FDA approval of the Eli Lilly drug, Cyramza, which is the first FDA approved drug for gastric cancer in AGES and the first approved treatment of it's kind (second line), ever. The second is the Merck trial results for their immunotherapy drug, Keytruda, showed promise in gastric cancer patients so much that they are moving ahead to Phase II in early 2015. Now I don't qualify for Phase II trials since my cancer is not specific, but that doesn't mean this drug won't show so much promise that it'll be standard in another year, and that's the goal, right? More treatment options. These are two more potential options we didn't have 6 months ago, and that's good. Stomach cancer is not as prevalent in the US as in Europe and, especially Asia, but it is the fifth most common cancer in the world and the third-leading cause of cancer death. Like pancreatic cancer, gastric cancer is most often not found until it has spread, which is why it is so deadly. We need treatment options for metastatic cancer, and these two options show promise. Fingers crossed.
I think that's it for now. Have a fantastic holiday season and I'll update when something new comes along.
xo,
Lisa
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