Cholangiocarcinoma is a brutal disease. There are not a lot of available treatment options, not a lot of money goes to research like it does for the more well known cancers, and by the time people get diagnosed with this cancer, it is usually more advanced.
One of the most exciting treatment options to become available to some Bile Duct cancer patients is Immunotherapy. It really is the princess treatment of the cancer world these days, and rightly so. It is saving peoples lives, people for whom traditional chemotherapy has ceased working, or never did work. I have even seen posts on discussion boards of people wanting to skip traditional chemotherapy, and go right to Keytruda. As the wife and caregiver of someone with cholangiocarcinoma and doing an Immunotherapy clinical trial, I have some thoughts on whether you should try Immunotherapy as a first line treatment option.
First of all, I don’t know of any clinical trials for cc(cholangiocarcinoma) that will allow this. In the trial Mike is in, you had to have exhausted chemotherapy, and first line treatment options to even be considered for the trial. I know immunotherapy has been approved for Melanoma and Lung cancer, so maybe you can do immunotherapy as a first line treatment for these cancers, but not for cc.
Secondly, you don’t want to do immunotherapy as a first treatment if you have cholangiocarcinoma because there is no guarantee it will work. In our clinical trial it is 3 months before you have your first scan to see if the Keytruda is working. If it isn’t working, you have lost 3 months of treatment. For those who have been here since the beginning, you know that in the 6 weeks or so that Mike was off the Tramitinib trial his tumor blocked off his stomach to the point that there was only a pencils width between his tumor, and the exit of his stomach. He barely survived having a feeding tube inserted, and the doctor was worried that he wouldn’t make it long enough for the drug to start working.
Thirdly, it takes a while for the immunotherapy to start working. The doctor explained it to us like this. He said that the first couple of treatments (spaced two weeks apart) are like the soldiers getting lined up for battle. They don’t actually start attacking the tumor for a while. Again, this is all valuable time that you can’t afford to lose.
Fourth, the expense. The drug itself is covered under the trial, but everything else is covered by you, or your insurance company. We spend $500 a month in gas, and travel related expenses going back and forth to Ohio State for Mikes treatment out of pocket. The deductible for our insurance is $5600. So we spend all year making payments on our deductible. The prescription deductible is separate, so we were seeing prescription bills in January of $300 for just one script. These all have to be paid when you pick up the medicine. It has been widely reported that the insurance company pays $12,000 a month for just the keytruda. So, if you don’t get lucky and get in a trial that covers the $12,000 it is out of reach for most people. I mean seriously.. This puts it out of reach for most people, including us.
Last, I read about how there are no side effects from immunotherapy. This has not been Mikes experience. It is really hard to figure out what is a side effect of a previous chemo, the disease itself, or immunotherapy but I can tell you that Mike didn’t have anemia, or low testosterone levels before immunotherapy. There definetly are side effects of immunotherapy infusions. For us, it is worth it to stay on it because the benefits far outweigh the side effects at this point, but the side effects have ranged from annoying to severe.
There is still a lot of room for new available treatment options in the Bile Duct cancer world. We need more research, more clinical trials, more education. We are lucky that it is working for Mike, but there are so many people out there who don’t have the specific genetic mutation that make it work for Mike, and need more treatment options. One of the main reasons I started this blog is to bring attention to this cancer, and chronicle our experience with it, and the available treatment options!