I've been taking regorafenib for a little over a week now, having started the date of my previous post. Four pills (40mg each), taken with a low fat meal. I've been doing it at breakfast, as I'm a big fan of cereal, which fits the bill. So far, so good as far as side effects. Things I've been told to watch out for are high blood pressure, mucositis, mouth sores, and a rash on my hands and feet. I did have dry nasal passages briefly for a couple of days after I started. No mouth sores yet, but I've had dry mouth since last Monday. Thankfully, regular use of biotene mouthwash keeps that in check. I'm supposed to check my blood pressure twice a day, as it's possible for it to climb dangerously high. Thankfully, I have some wiggle room there. I normally run low (100s/60s), and so far I've only had a bump of 10 above my baseline numbers, which is still low. The trial doctor told me that side effects often force a dose reduction, and most patients end up taking two pills, with the second week of treatment being the toughest. With that facing me now, I guess I'll soon know how I'll fare.
Scans to see if it's working are in the 8th week. And that's the big question I'll have to face as I continue up to that point. With the chemo, since I was so symptomatic, it was easy to tell that it was working by tracking my symptoms and the tumor sticking out of my back. Here, I'll have to rely on not developing any symptoms, but lung tumors can get pretty big before they result in symptoms. So far, I can breathe in pretty deep, perhaps even a little deeper than before I started the trial, so here's hoping that's a good sign.
Sunday, March 20, 2016
Saturday, March 12, 2016
Still fighting it...
It's been a long time since I last posted an update. A lot has happened between the day I started the immunotherapy trial and now. There are far too many details to publish in one post; I will be addressing those in separate posts. Here, I'll just give a long overview.
The immunotherapy trial did nothing to stop the cancer. In fact, it only grew even faster. By mid-June, I had 2 liters of fluid build up around my left lung, owing to tumors in the lining blocking any path for the fluid to leave the pleural cavity. The pleural cavity is the area between the lung and its lining that normally has some fluid, but various diseases can lead to fluid buildup by blocking the normal cycling of fluid through it. After getting the fluid drained, I underwent a procedure called pleurodesis, fusing my left lung to its lining to prevent further buildup. It was at that point that I officially went off the trial -- the surgeon noted that the pleural cavity was full of tumors. This was after only two doses of Keytruda. Perhaps the most frustrating part of it all was that was that the signs that the drug was working mimicked the symptoms of disease progression. Coughing, shortness of breath, anemia, and random fevers, all of which I dealt with, were side effects of the drug I was told to watch out for.
The pleurodesis provided some relief, but the tumors continued their march in the 10 days between then and when I started chemo. (I couldn't start immediately because the fusion takes time to hold, and giving chemo before that happens ends up undoing it.) I started feeling signs of disease in the lining of my right lung the day before I was discharged from the hospital, in the form of a crackling feeling on that side when breathing in. By the end of the week, walking more than a very short distance was too much for me, and I needed to be pushed in a wheelchair. My appetite was gone, I lost a bunch of weight, and I felt downright miserable, with fevers as high as 103. Then over the weekend, some intense back pain developed that I would many months later find out was due to a tumor in my spine. There was also a tumor sticking out of my back, under one of my surgical scars, that had grown to the size of a small egg. A CT scan of my chest showed that tumors had taken over almost all of my left lung. With all of those many symptoms indicating advanced disease, I began my chemo treatments at Sloan so I could be near the experts.
The drugs I received were cyclophosphamide and topotecan. The dosing was spread out in small intervals over 5 days, so that I didn't need the constant hydration that I'd previously needed when getting cyclophoshamide or its relative, ifosfamide. I was told that I could expect a response, if there was one (the response rate is around 30% in relapsed patients), in a week. Miraculously, it happened instantly. On day 1, I had to be wheeled to the clinic. On day 2, I was able to walk there on my own power, but had to be wheeled back, and was not in pain anymore. On day 3, I was walking on my own power again. The fevers and coughing disappeared almost instantly. The tumor on my back was shrinking. After a second cycle and confirmation of a response by scans, I came back home to continue treatment at a nearby clinic. By the end of October, confirmable live tumors were gone from my scans.
This routine went on until the beginning of this month. Four new spots popped up in my left pleura, the largest 1.2cm in size. So after 12 rounds of cyclo/topo, it was time to try something else. The good news is that, unlike last year, there are some drugs specifically targeted to Ewing's sarcoma that are supposed to be entering trials this year. There are also a couple of other chemo options. I weighed those versus current clinical trials. What I ended up choosing is a trial of a drug called regorafenib at Stanford. It's a chemo taken in pill form in 4 week cycles, 3 weeks on and 1 week off. It targets growth factors that tumors take advantage of to grow and spread. A related drug, pazopanib (Votrient), is used by a number of relapsed sarcoma patients. The trial doctor said that the majority of her Ewing's patients had at least a few months of disease stabilization. It doesn't sound like a lot, but that's my goal right now. I do not have a high tumor burden, so I want to keep it stable until the promising targeted therapies are ready. I also have a couple of other chemo combinations and/or radiation treatments to turn to if this does not work. Plus, the side effects are not as severe, so I will be getting a lot of my life back, versus the pattern of chemo week, low counts week, and good week that I once again dealt with on cyclo/topo. I really hope this works out for me, because I could very much use some time to recover from the IV chemo, both mentally and physically.
The immunotherapy trial did nothing to stop the cancer. In fact, it only grew even faster. By mid-June, I had 2 liters of fluid build up around my left lung, owing to tumors in the lining blocking any path for the fluid to leave the pleural cavity. The pleural cavity is the area between the lung and its lining that normally has some fluid, but various diseases can lead to fluid buildup by blocking the normal cycling of fluid through it. After getting the fluid drained, I underwent a procedure called pleurodesis, fusing my left lung to its lining to prevent further buildup. It was at that point that I officially went off the trial -- the surgeon noted that the pleural cavity was full of tumors. This was after only two doses of Keytruda. Perhaps the most frustrating part of it all was that was that the signs that the drug was working mimicked the symptoms of disease progression. Coughing, shortness of breath, anemia, and random fevers, all of which I dealt with, were side effects of the drug I was told to watch out for.
The pleurodesis provided some relief, but the tumors continued their march in the 10 days between then and when I started chemo. (I couldn't start immediately because the fusion takes time to hold, and giving chemo before that happens ends up undoing it.) I started feeling signs of disease in the lining of my right lung the day before I was discharged from the hospital, in the form of a crackling feeling on that side when breathing in. By the end of the week, walking more than a very short distance was too much for me, and I needed to be pushed in a wheelchair. My appetite was gone, I lost a bunch of weight, and I felt downright miserable, with fevers as high as 103. Then over the weekend, some intense back pain developed that I would many months later find out was due to a tumor in my spine. There was also a tumor sticking out of my back, under one of my surgical scars, that had grown to the size of a small egg. A CT scan of my chest showed that tumors had taken over almost all of my left lung. With all of those many symptoms indicating advanced disease, I began my chemo treatments at Sloan so I could be near the experts.
The drugs I received were cyclophosphamide and topotecan. The dosing was spread out in small intervals over 5 days, so that I didn't need the constant hydration that I'd previously needed when getting cyclophoshamide or its relative, ifosfamide. I was told that I could expect a response, if there was one (the response rate is around 30% in relapsed patients), in a week. Miraculously, it happened instantly. On day 1, I had to be wheeled to the clinic. On day 2, I was able to walk there on my own power, but had to be wheeled back, and was not in pain anymore. On day 3, I was walking on my own power again. The fevers and coughing disappeared almost instantly. The tumor on my back was shrinking. After a second cycle and confirmation of a response by scans, I came back home to continue treatment at a nearby clinic. By the end of October, confirmable live tumors were gone from my scans.
This routine went on until the beginning of this month. Four new spots popped up in my left pleura, the largest 1.2cm in size. So after 12 rounds of cyclo/topo, it was time to try something else. The good news is that, unlike last year, there are some drugs specifically targeted to Ewing's sarcoma that are supposed to be entering trials this year. There are also a couple of other chemo options. I weighed those versus current clinical trials. What I ended up choosing is a trial of a drug called regorafenib at Stanford. It's a chemo taken in pill form in 4 week cycles, 3 weeks on and 1 week off. It targets growth factors that tumors take advantage of to grow and spread. A related drug, pazopanib (Votrient), is used by a number of relapsed sarcoma patients. The trial doctor said that the majority of her Ewing's patients had at least a few months of disease stabilization. It doesn't sound like a lot, but that's my goal right now. I do not have a high tumor burden, so I want to keep it stable until the promising targeted therapies are ready. I also have a couple of other chemo combinations and/or radiation treatments to turn to if this does not work. Plus, the side effects are not as severe, so I will be getting a lot of my life back, versus the pattern of chemo week, low counts week, and good week that I once again dealt with on cyclo/topo. I really hope this works out for me, because I could very much use some time to recover from the IV chemo, both mentally and physically.
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