Recent Scans

Cody recently had a scan done in Salt Lake City, UT. He has been seeing Dr. Spraker who has been in contact with and consulting Dr. Anderson (MD Anderson Cancer Center). The scan was done on May 23rd. It was a disappointing report that came back from the doctor but it wasn't really a surprise either. We had a feeling it wasn't going to look good, never the less it is still hard to prepare yourself to hear he has failed the regimen that he is currently on as well any front line medications and also many second line medications. We are running out of options and treatments. Here is what we are left with (none of which are guarenteed to make his cancer go into a dormant, nor non growing phase:

 1) Return to his previous regimen of votrient/pazopanib. It did seem at least initially this was holding his disease stable. As Cody is a minor AND this combination is experimental we have fought to get financial/insurance support for this drug. There is no promise that this will be useful and may have a lot of burden associated with it. If we go this route, the plan would be to scan Cody in a month or 2 in order to make sure this is helping otherwise there is no reason to continue. Votrient was FDA approved for refractory soft tissues sarcomas for adults and DSRCT patients finally, so hopefully the next time around insurance will decide to pay for it but they still might deny coverage. Only time will tell.

2) Oral etoposide is another medication that has been used to try to control growth in many refractory sarcomas. This is also something that Cody could do at home and hopefully we would not have to fight to get it covered(we might have to, but may eventually be approved as there are several patients using this in this capacity, although not necessarily for DSRCT). While not expected to be curative, this has a chance to decrease or possibly stop tumor growth. It has been seen to work at least temporarily for several types of sarcomas although DSRCT is not one of them. 

3) Go back to IV chemotherapy. There are NO proven regimens by IV that we have not already tried. This means that they would give Cody medication that will for sure make him sick (chemo). The burden of this (i.e. being sick, travelling, finding someone locally to give chemo and take care of Cody when sick, being admitted with fever, etc.) are not worth any benefit he might receive (as the benefit would be small). Cancers tend to mutate as they grow. Once you have had one chemo agent by IV and the tumor has grown through it, you are even less likely to respond to it a second time. We would have to come up with a regimen for him that he has not had AND that may have some evidence of use in DSRCT (there are NONE that fit both of these criteria).

 4) Go on a clinical trial. The type of study that Cody qualifies for now is called a phase I study. This type of study seeks to find the right dose to give people of a new drug OR a combination of drugs that haven't been used together in the past. While the hope is that these study drugs are new and great and help people, the main goal of this type of study is to find the right doses, not to cure patients. Sometimes patients want to do this to help others in the future and feel that is important as part of their legacy. But WITH these types of studies he could potentially have bad side effects. The likelihood of someone having a response (meaning their disease gets better) is less than 5% and for most studies, it's even less than that. The doctor thinks that the benefit for Cody would be way less than the risks (i.e. getting possibly IV chemo, travel by plane, staying outside of home, with likely no improvement in his disease).

 We need to do what is best for Cody and don't want to make his life miserable with travel and/or medications). There comes a point in treatment when you have take someone's quality of life into consideration - when you are first diagnosed and are told that this can be cured, you will do whatever is necessary however painful it is for the patient AND the family. At that time, usually doctors tell you what to do and you do it. There comes another point in therapy when we know the disease is incurable and the goal is to live while managing the disease as best we can. We are there now and have been for a while. At this point, even the smartest of doctors are guessing what medications might work and at this point, there are few choices that may help halt Cody's disease.

We are still fighting to keep Cody and will do whatever is necessary. At this point we are going with putting him back on Votrient which cost $5,100 to order this time because insurance is still not paying for it at this point. Hopefully it works as before and there is no new growth. Please keep Cody in your prayers and pray that this medication stops further tumor growth and even better helps shrink existing tumors. We are not sure if this will work or if it does work for how long. Please pray that the side effects are minor and temporary. We will likely have another scan in a month or two.