Disappointing News at Surgery Consult, Brody's Kidney NOT doing Well, Considering Entering HSV1716 Trial

We received discouraging news at our surgery consult last week on Thursday at Cincinnati Children's.  We were basically told that Brody's tumor is inoperable.  It is wrapped around too many major blood vessels (his aorta) and organs.  At our last visit to Cincinnati, the surgeons did not have the MRI results yet.  After, reviewing Brody's latest MRI, they decided the surgery is just too dangerous.  We did not get to meet with the surgeon personally on Thursday.  Instead, we met with Dr. Turpin (oncologist) who relayed this news to us.  I am relieved that Brody is not soon facing a MAJOR surgery.  We don't want him to have to go through another biggie.  But, at the same time I had high hopes for Brody to feel so much better after recovering from the surgery and also for him to have awhile without a giant tumor.  He is simply running out of room for this tumor to grow.  It's all over his abdomen, into his groin area, around his aorta and in his spinal column.  I wanted to know it could be removed surgically somehow and that we could be awarded with more time with Brody.  This news that we cannot do the surgery is very hard,  It makes me feel like our time is now so much shorter.  I pray it's not and I am still praying hard for a miracle.  I do live in the world of reality though and it's very difficult not to think about losing him.

We did meet with a neurosurgeon at Cincinnati Children's though.  He examined Brody and asked us a series of questions related to Brody's neurological symptoms.  He reviewed the MRI with us and showed us where the tumor has infiltrated the spinal column  He let us know that a lot of Brody's symptoms are indeed related to where the tumor is located in his spinal column (headaches, muscle weakness and cramping, shooting pains in legs, urinary and fecal incontinence, foot drop etc).  He explained that the slightest change in pressure or size in the tumor in this area can set-off any of these symptoms.  He did not want to do surgery yet to remove the tumor from the spinal column.  Brody's symptoms have improved lately and as long as this is the case, he would prefer not to intervene surgically.  (He felt the radiation treatments are still doing their work on the tumor in this area).   If Brody were to have any signs of worsening neurological symptoms or if upcoming CT Scans and MRIs show any increase in size, then he would do surgery to remove the tumor from the spinal column area.  He would want to act very quickly if any of these were to happen to prevent permanent loss of nerve function.  

Dr. Turpin spoke with us for awhile after we met with the neurosurgeon.  He wanted to let us know about some trials that have opened that may benefit Brody.  Two of the trials he told us about on our last visit to Cincinnati have opened (for a short time) that were closed when we last met with Dr. Turpin.  I wrote details about each of these in a previous blog post concerning our consult with Cincinnati Children's.  The two that have opened are the TEM-1 antibody trial and the HSV trial.  

We are considering entering the HSV trial.  Here is a link with information on this trial and a copy and paste from our previous blog post about this trial.  

This trial uses the oncolytic virus HSV-1716 which is a mutated version of the herpes simplex virus which has been demonstrated to selectively infect cancer cells rather than normal cells. Here is a link with information on this trial.

http://clinicaltrials.gov/show/NCT00931931

Dr. Turpin explained that unfortunately so far the human clinical trials have not been nearly as exciting as the pre-clinical and animal studies. It has not yet cured any of the children that have participated in this trial. And, so far there has only been one child with rhabdomyosarcoma that has participated in this trial. This was a 13 year old who received this treatment back in 2010. A phase 1 trial is a dose-finding trial though. Maybe the correct dose has not yet been given? Phase 1 trials start with low doses and then work upwards. The trial enrolls three children at a time and tests the effects of one dose on each child. If that dose is tolerable then the next set of 3 kids receive a higher dose. It could be more effective as dosages increase. At least I really hope so, anyway. 

We are considering entering this trial now even though Brody's tumor has been relatively stable since switching to his current chemo regimen of cyclophosphamide, topotecan and bevacizumab.  It is almost certain that his current chemo regimen will eventually fail/not keep things stable.  We have been in the situation before where it was our plan that if the regimen failed then we would enter a trial we had in mind only to have that trial close just as we were hoping to enter it (when Brody's chemo stopped working).  We have been interested in the HSV trial for a long time.  We are thinking maybe it's best to take the opportunity to give it a try now rather than waiting for Brody's current chemo regimen to fail and then finding out there are no spots left for the HSV trial at that time.  Also, Brody's current chemo regimen is very harsh and his kidney is really starting to have trouble.  We are not sure how much longer his little body will be able to withstand his current chemo regimen.  We are hoping that the HSV trial can stabilize the cancer for awhile and allow his little body to heal.  We are hoping it won't be quite so harsh.  (And, of course, we are praying it's the miracle we have been waiting for too).  

Speaking of kidney troubles....we are extremely concerned and worried about Brody's kidney function.  Brody's creatinine and BUN are both up considerablly and he has a lot of protein in his urine this past week.  He was not able to finish chemo for this cycle due to his kidney function.  He had to stop it 2 days early.  He had a renal ultrasound performed to confirm that there is no obstruction to urine flow (the stent is open and working) and no mass within the kidney or bladder etc.  Brody had surgery just a couple weeks ago to replace the stent in the ureter.  It's possible he may be healing from injury during this surgery or from an infection.  He has been on additional antibiotics just in case but has not had any positive urine cultures.  It has been a very LONG weekend waiting for our next lab check on Monday morning.  I am hoping his kidney function shows signs of improvement after we get labs on Monday morning.  I am worried that this may be a more chronic kidney function problem though. His kidney has taken a beating with all of hte chemo he's had to take and the pressure from the tumor itself too.   Brody will not be able to enter any trials with poor kidney function.  At his current levels, he would be ineligible for the HSV trial.  Also, he would have extremely limited options for chemotherapy without good kidney function.  Our oncologist has said to us before that Brody's kidney problems may actually be a blessing in disguise in that it would be far less awful to pass away from kidney failure than from the cancer itself.  If Brody's kidney is actually failing, I am not sure we would take major steps to prevent the failure.  Unless there is a means to actually save his life or provide him with a significant increase in quality time left of his life, we may have to choose to let him succumb to kidney failure rather than cancer.  I hate thinking about all this but I can't stop these awful thoughts.  Praying and praying and praying some more for good kidney function labs tomorrow morning (Monday morning)!  

If Brody has good kidney function labs and doesn't need blood Monday morning,  then we will head to Nationwide Children's Hospital in Columbus, Ohio to meet with Dr. Cripe tomorrow afternoon.  He is the principal investigator for the HSV trial.  We will be meeting to discuss the details and possibly enroll in the trial.