Brody's CT scan on Wednesday Showed Brody's Tumor has Gotten a Little Bigger Again

Brody had a CT scan on Wednesday.   Unfortunately the tumor has gotten a little bit bigger again.  Obviously it is not a good thing that each  CT scan lately is showing the tumor continuing to get a little bigger each time.  The tumor is gaining ground.

We had planned on proceeding with the molecular guided therapy trial in Grand Rapids, MI if we got news on this CT scan that the tumor was still growing.  I called on Wednesday to get moving along with this plan only to discover that the trial had just closed and they are not accepting anymore patients.  Talk about pulling the rug right out from under someone.   Seriously!  Ugh!  So now the big question is what do we do at this point???

For the past 6 weeks Brody has been taking Vinorelabine and Temsirolimus each week at the hospital and then cyclophosphamide as tablet daily at home.   There has been debate about whether it's  better to do IV cyclophosphamide in high dose as a single dose every three weeks or the daily low dose cyclophosphamide.   It is not clear which way is more effective.   So for now we have decided to switch  over to the IV cyclophosphamide instead. 
Brody started week 1 of his new regimen today.   He did pretty well with it today.    Brody has had high dose IV cyclophosphamide before (in 2010 with different combo of meds) and back then it made him extremely ill.   He had lots of nausea,  vomiting,  and diarrhea.   Today,  (knock on wood) he did not throw- up at all. He is having significant diarrhea (headed to the potty every 10-15mins) tonight and he is not urinating very much at all considering the amount of fluids he is receiving by IV.  I think all the liquid is being lost in his stool.   Brody has an amazing tolerance for bathroom issues.   His tumor has made these functions difficult for so long Brody doesn't really think too much of having to head to bathroom so much.  I am hoping it settles down very soon so he can get some sleep tonight though. He is crazy tired but just has to keep going to the bathroom. 

Anyhow,  we plan to try the IV Cyclophosphamide with the Temsirolimus and Vinorelabine for a couple 3 week cycles and then getting scans again to determine if it's working to control the tumor or not.  And,  then in the meantime we are seeking second,  third,  fourth etc opinions as to how to proceed if this change in regimen does not work.  

Brody's records were sent today for a consult from Dr. Wexler at Memorial Sloan Kettering in New York City.  

I also contacted Cincinnati Children's Hospital today.   They do have some clinical trials there that offer a different means of targeting rhabdomyosarcoma than what we have tried.   Dr. Turpin called me this evening to discuss Brody's history and gave some very general insight as to what could be offered there.   He also concurred with our oncologist that the high dose IV cyclophosphamide with Temsirolimus and Vinorelabine that Brody just started today is worth a try and that we should pursue this option before anything else right now.   He also said that he could offer Molecular Guided Therapy at  Cincinnati Children's too.   He said,  it generally takes about 2 months for them to get this analysis back though to guide therapy. He explained that it doesn't always pan out either though as far as the guidance. He said that sometimes you may have an analysis that indicates a high liklihood that a particular drug should be effective for a particular cancer and then you give this drug to the patient and it's not effective at all.   Basically he seemed to think that as promising as molecular guided therapy sounds it can be disappointing.   And,  I do agree there are certainly many limitations.  But I still want to do it.  It might give us a better idea of what trial/or drug maybe to lean toward if we have already exhausted all standard options already.   We are seriously running out of options.   There is not much left to try or do at this point.   Also not all molecular profiling is the same. Some are far more extensive and analyze more markers or whole genome or more signaling pathways or more drugs than others.   The expense varies tremendously and timing of when you can get the results.  It seems it can take anywhere from 1week to 2months for results to come back to the oncologist.

We have just recently started giving Brody hemp oil with a high CBD content.  There is some encouraging but still limited evidence that CBD  may help fight his cancer plus relieve significant pain and increase appetite. He just started it yesterday (Wednesday).   And,  so far I would have to say his appetite has definitely increased which is a very good thing. Getting Brody to eat is normally a daily HUGE challenge.

Please continue to pray for Brody.   Pray for a miracle healing.