Brody went to hospital on Monday to get labs done and we were hoping he would be able to start back on chemo on Monday too. Unfortunately, his kidney function is still not good enough to start chemo again. Today now makes 3 weeks since Brody has had any chemo.
Since Brody has not been able to do chemo and he has to be off chemo for awhile to be able to do surgery, our oncologist decided to go ahead and get Brody scheduled this week for surgery to place an internal stent from his kidney to his bladder. (Same as he had before). He (and we) are hoping the internal one will be enough to keep Brody's kidney functioning well and that Brody will be able to get rid of the external nephrostomy tube. Once the internal stent is placed, the external tube would be clamped and Brody will be monitored to assure internal tube is handling the job okay. If this goes well, then Brody would be scheduled for another surgery to have the external tube removed. We are hoping this works out. Brody would much prefer the internal one rather than external so he can swim and take a shower and not have other kids etc wondering what is wrong with him when they see that external one. Also, the infection risk with the external one is much greater. It's a BIG worry for us. Hopefully the tumor is not so big that the internal one won't work.
Since Brody's kidney function has been so bad recently, he has not been able to have a CT with IV contrast. He had one without contrast but this does not give as good of a picture to determine change in tumor size. Once Brody's kidney is strong enough he will get another CT with IV contrast so it can be determined if the tumor is indeed growing or not. The worry of course is that it has changed significantly considering this sudden problem with Brody's kidney/urine flow being obstructed. It's hard to determine at this point if the tumor is significantly bigger or not and if his chemo regimen is still working. To complicate it further, he has been off chemo for 3 weeks now and will be off of it until at least Monday (may get one of his chemo meds on Monday but not the others that are harder on the kidney). Once he finally gets his CT scan the tumor may appear significantly bigger simply because he has been unable to take his chemo for so long rather than it not working anymore. Hopefully we get the scan and the tumor hasn't got significantly bigger despite all this. I am, of course, very worried that may not be the news we get.
I have been very busy researching and trying to understand all the available trials out there for rhabdomyosarcoma. I want to be able to be as informed as possible as to any possible options should we get bad news. Figure we gotta be ready to make a decision quickly and go with it. It's really a hard decision. Basically the only thing left is Phase 1 trials (and looking into research that is looking promising to soon start human trial phase 1... some of the more promising research being done hasn't even made it to Phase 1 yet). Generally speaking these are designed to test safety and are appropriate dose finding trials. Generally there is not much information on how effective or ineffective the agent being tested will be. To make a decision you really need to understand the pathophysiology of rhabdomyosarcoma and have a very good understanding of genetics, immunolgy, and biochemistry. Much of the pathophysiology of rhabdomyosarcoma is still poorly understood and unknown. It's been quite some time since my Genetics and Biochemistry classes. I was reading a clinical research paper yesterday regarding potential promising discoveries with gene silencing and differentiation therapy that could be a potential cure for rhabdomyosarcoma. This article was only 4 pages long but it took me a good 6 hours yesterday to read it and actually understand it. I had to bust out some old textbooks and Google became my best friend as I was trying to decipher the language of this article. After reading and studying this trial for awhile it appears it's directed more towards aveolar rhabdomyosarcoma rather than embyronal rhabdomyosarcoma that Brody has. There is still potential that the same gene silencing could cause cell differentiation for embryonal rhabdomyosarcoma too (meaning make cancer cells decide to not be cancer cells anymore... make them form skeletal muscle tissue and stay that way rather than constantly dividing and forming larger and larger tumor and spreading). The research article did not mention trying to silence this gene (TANC1) in embryonal rhabdomyosarcoma cell types. The author did say it was a "provacative question" as to whether they would see the same response with embryonal rhabdomyosarcoma. The author of this study has stated in interviews that he is optimistic that he will be able to go to human trials with this promising new approach to treat rhabdomyosarcoma. I emailed him today to ask if he will be soon starting a human trial, gave him a brief Brody patient history and asked if it would be appropriate for us to consider this treatment option for Brody. It's in Dallas, Tx. I haven't got a reply on my email yet. (Our oncologist here in Toledo suggested we contact him too after he read his clinical research article).
Here is a link where you can read an interview with this researcher describing his promising research. Unlike his clinical research articles, the interview uses language we can all understand. Check it out! Exciting stuff! (Bill stumbled upon this article and brought it to my attention... Exciting stuff he found).
http://www.ivanhoe.com/channels/p_channelstory.cfm?storyid=31510
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