Live from NY...
Good news from New York: Dr. Bob Maki, the sarcoma doc here, thinks we're on the right track with treatment. He's encouraged by the good results Dr. Adkins (St Louis) has had with the adriamycin/taxol (chemo) combination in the past, and so he would recommend following that track. But first, he thought it might be a good idea to enter the Rapamycin clinical trial and see if it works.
Rapamycin is another form of chemotherapy, and it has had some interesting effects on sarcoma (like bone tumors) that have not responded to traditional means. It would have the same side effects as the other chemo (nausea, hair loss) but they may be milder. If I am to enter the trial, I have to try it before any other chemo, so we'll try it for eight weeks and see what happens. If it works, then great! we'll stay on it. If not, we can switch at any time. My St Louis doc suggested this trial, too, so he can administer it there. The fact that the tumor shrank so much during radiation has given me some time to try this trial drug.
Dr. Maki was also encouraging about other new treatments he knew of that are coming down the pike in the next months.
Bottom line, he seemed confident and passionate about kicking this tumor's rear end, and he didn't give me that look that some oncologists do--that look that says, "we're going to do what we can to make you more comfortable before you buy the farm." He spoke of cancer more like a chronic disease that we can fight in different ways indefinitely. He didn't use words like "noncurative." And he should know--he sees more of these than most, and he's on top of the research.
How many does he see, you ask? Four or five a year, which goes to show how rare this is. He estimated there are maybe 25-50 of these in the USA per year. So part of what that means is that doctors really have no idea what works and what doesn't. So we've learned to take everything we hear with a grain of salt.
Dr. Maki also expressed great relief that we did not do surgery to remove the right lung. It almost always appear on both sides, he said, so such a drastic surgery would not have been beneficial at all in the long run. This way, if we can shrink the tumor, I'll have both lungs. It goes to show you that when God answers a prayer in the negative (we were really praying for surgery), he has a reason.
So we're hopeful, and we're thanking God that he has directed our paths so clearly. We have no doubt about the next step in treatment, and that's what we hoped to accomplish here.
And now we have the rest of the week to enjoy the heatwave that followed us here from St Louis. Susan took M and two little girls into the city today, to the Children's Museum of Manhattan, and B and I are here in Astoria eating peanut butter and jelly sandwiches and raisins, nice and cool in our basement apartment.
Rapamycin is another form of chemotherapy, and it has had some interesting effects on sarcoma (like bone tumors) that have not responded to traditional means. It would have the same side effects as the other chemo (nausea, hair loss) but they may be milder. If I am to enter the trial, I have to try it before any other chemo, so we'll try it for eight weeks and see what happens. If it works, then great! we'll stay on it. If not, we can switch at any time. My St Louis doc suggested this trial, too, so he can administer it there. The fact that the tumor shrank so much during radiation has given me some time to try this trial drug.
Dr. Maki was also encouraging about other new treatments he knew of that are coming down the pike in the next months.
Bottom line, he seemed confident and passionate about kicking this tumor's rear end, and he didn't give me that look that some oncologists do--that look that says, "we're going to do what we can to make you more comfortable before you buy the farm." He spoke of cancer more like a chronic disease that we can fight in different ways indefinitely. He didn't use words like "noncurative." And he should know--he sees more of these than most, and he's on top of the research.
How many does he see, you ask? Four or five a year, which goes to show how rare this is. He estimated there are maybe 25-50 of these in the USA per year. So part of what that means is that doctors really have no idea what works and what doesn't. So we've learned to take everything we hear with a grain of salt.
Dr. Maki also expressed great relief that we did not do surgery to remove the right lung. It almost always appear on both sides, he said, so such a drastic surgery would not have been beneficial at all in the long run. This way, if we can shrink the tumor, I'll have both lungs. It goes to show you that when God answers a prayer in the negative (we were really praying for surgery), he has a reason.
So we're hopeful, and we're thanking God that he has directed our paths so clearly. We have no doubt about the next step in treatment, and that's what we hoped to accomplish here.
And now we have the rest of the week to enjoy the heatwave that followed us here from St Louis. Susan took M and two little girls into the city today, to the Children's Museum of Manhattan, and B and I are here in Astoria eating peanut butter and jelly sandwiches and raisins, nice and cool in our basement apartment.
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