Last Thursday, Adam and I went to Johns Hopkins for our third second opinion (or our fourth opinion?).
When I was first diagnosed, we received recommendations from a lot of family and friends about where to go for treatment (Johns Hopkins, Georgetown, MD Anderson, Mass General, etc.). We decided to start by getting a second opinion at Georgetown University since it was close and I could easily get regular treatment there. Georgetown also has a well know gastric cancer department, so we felt like we were going to a good place. At first, I didn't like the doctor we met with. He essentially agreed with the diagnosis from Virginia Cancer Specialists, agreed with their recommendation to start treatment with the EOX protocol, and agreed that I would live with cancer for the rest of my life. He thought I was too sick to wait to start a clinical trial (it would take several weeks to start treatment in a trial). He said he knows the physicians at Virginia Cancer Specialists, he works with them often, and thought I should continue getting my treatment there. He said he was happy to meet with us again in a few months if the treatment didn't work or if we needed any recommendations, and then he sent us on our way.
I guess I was under whelmed because I had expected that a cancer center with a larger GI focus would have more answers. I wanted him to tell me to come there for treatment, that they can get results that community cancer centers can't, that because I am young, he wants to be aggressive and fight this with us. It was disappointing that didn't happen, but at that time, I was so sick that it really didn't bother me much. I was ready to go home and start treatment right around the corner from my house. So that's what we did.
After making good progress on EOX, I started to be unable to get in full treatment cycles. EOX includes two weeks of oral chemo, but my blood counts were so low after a week that I had to stop treatment to get Neupogen (a white blood cell stimulating factor). After six rounds of EOX, I was doing pretty well. Earlier PET scans had shown a dramatic decrease in tumor activity, my tumor markers were down, an endoscopy showed that the tumors in my stomach were gone, but there were still tumors in my liver to contend with. So we decided to take a short break in treatment to get some more opinions.
Adam scheduled appointments for us to go to Memorial Sloan Kettering in New York and back to Georgetown. Sloan Kettering is the second ranked cancer hospital in the nation after MD Anderson in Houston, TX. My local physician fully supported us going to Sloan for another opinion; he had done his residency there and told us they have a huge GI cancer center. He thought they would be excited to see someone so young.
When we got to Sloan, we were shocked at how large the GI cancer center was. The waiting room was huge and it was packed with patients. I noted several other younger female patients in the waiting room. When we met with the physician, he was nice, but essentially told us that we were already on the right track. He recommended a change in treatment - he thought we should stop the epirubicin (the E part of EOX) and continue with oxaliplatin and 5FU (5FU and Xeloda are in the same family, just different routes of administration). He told me it was unlikely that the tumors in my liver would ever go away and that I was doing fine as long as they were shrinking or getting smaller.
I was really upset after our meeting at Sloan. Is it too much to ask for to find a doctor who wants to be aggressive? One who thinks that progression-free survival isn’t good enough? I’m 32, not 84! A few more months or years is not the plan I am going for. It was beyond upsetting. Here we were, at the second best cancer hospital in the country, meeting with a physician who specializes in gastric cancers, and we were getting the same news. Granted, his recommendation to stop epirubicin and change from Xeloda to 5FU were both good recommendations, I was just expecting a lot more.
By the time we went to Georgetown for the second time, I had more realistic expectations. The physician agreed with the recommendation from Sloan to change treatments. He still didn’t feel a need for me to come there for treatment. And then he said the only optimistic thing I had heard from a physician – sometimes the tumors just go away, maybe that will happen. It’s crazy to think that’s as good as it gets, but I was happy to hear that.
That brings me to our third stop – Johns Hopkins. Hopkins is the third ranked cancer center in the country, and they have a physician who only sees patients with esophageal and gastric cancer. I did not have high hopes going in to this one, given our previous experiences, but it turned out to be a good trip. He started by telling us what every other doctor has already told us – it is unethical to stop a treatment that is working. As long as I am not seeing disease progression on my current treatment, I should continue with that for as long as possible. But, he also told us about some of the research they are doing that may be an option down the road. The study that he would recommend would be for two drugs that they are calling “chemo primers.” The drugs are not chemotherapy agents themselves, but the intention is that they would be given to cancer patients to improve tumor response to subsequent chemotherapy. This isn’t an option for me now, but it might be a good route if FOLFOX stops working for me. I guess we will have to wait and see.
So we have been to two of the top three cancer centers in the country, and we have seen four different physicians (including the physician I see at Virginia Cancer Specialists). I think we have heard all we are likely to hear for the time being. It is frustrating that there aren’t more options and that so little is known about stomach cancer treatments, but we will likely be back at Johns Hopkins and Georgetown in the future to figure out what will be next. In the meantime, I am hoping that the clinical trials that are going on across the country find something promising.
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