My Precious (Drug not Ring)

Well last week was an enormous whirlwind.  We ran around to about fifty people, called a million people, and fought like the Romans trying to get everything worked out to come and get on this clinical trial to get the Nivolumab and Yervoy infusions.  Well it paid off.  I have never fought for something so hard in my entire life.  It was a lot of work.  A TON!!!

Last week we met with his neurosurgeon and she gave us the all clear on his brain MRI.  We were soooooo relieved.  Then we met with his oncologist who gave us the biopsy results which were negative for active melanoma in his pelvis!!! So those were the two things we needed for certain to get into the clinical trial.  I emailed Dr. Weber from the room at MD Anderson, and he said as long as we get the bone biopsy pathology overnighted to him and the brain tumor he had resected stained with a certain protein to test something, we could come to Florida the next week (before his ct scans became out of date) to start the process to get into the trial.  WE HAD to get in the next week otherwise we would have to repeat scans and whatnot.  There are strict dead lines when getting into clinical trials and everything had to be within 28 days. Well let me tell you getting MD Anderson to get pathology overnighted and stained in two days (when they have thousands of people needing similar things)  was going to be a major task and miracle if it was accomplished.  I spent a million hours on the phone the next day, and it was taken care of!! We still had one issue.  Bennie's kidneys were freaking out from all the imaging contrasts and his creatinine was elevated.  He was super thirsty and something wasn't right.  Well it just so happened with the combination of his last chemo and all the mri and ct contrast it put him into acute kidney failure more or less.  It usually fixes itself over time with lots of hydration, but we didn't have TIME!!!!! His blood pressure was also sky high from the kidneys and stress of all of this going on.  THE STRESS WAS HIGHER LAST WEEK THAN EVER BEFORE!!!!!!!!

So MD Anderson overnighted the pathology, but it got to Moffitt on a day the pathologist was going out of town.  Well, the Moffitt pathologist said she would come in Friday at midnight when she returned to come in and read the slides.  Moffitt said to go ahead and plan on being here in Florida on Monday morning to go forward with the clinical trial.  So, we basically left on Saturday with pretty much no notice (no time to pack) and no information on if the pathology was read, if the staining was done, or if Bennie's kidneys and high blood pressure would kick him out of the trial.  WE left Houston taking a HUGE leap of FAITH!!!

My parents had planned to take this week off for their anniversary, and so I decided to ask if they may want to take a little trip to Florida with us so that the kids could come along as well since they had spring break.  This way Bennie and I could spend a little fun time with them, and it would take some stress off of us to get out and do some fun activities with them.  The times Bennie and I would need to go to the Dr. then my parents could hang with them at the hotel.  So it worked out pretty well.

We arrived Sunday night.  We came to Moffitt on Monday morning, and Dr. Weber said the pathologist read the slides and it all looked good.  We signed the consents, Bennie did lab work, ECG, and chest xray.   We were told the labs would result on Wednesday, and the trial investigator would have to approve everything before we actually got the drugs.  So we had two days to kill.

We left Moffitt and drove the kids to the beach for a little bit.  Emmi and Colby had a blast, and Emmi and Bennie even swam in the frigid ocean!!! Colby is perfectly fine with a shovel and sand for literally hours and hours.

The next day we went to Busch Gardens and really had a great time.  It wasn't too hot or too cold, and the crowds weren't that bad.

Yesterday we rested and went to go look for Manatees in the bay, and went to the Florida Aquarium.

We just got the word yesterday that everything looked great and the clinical trial going to happen for sure!!!!!!!!


WE arrived at 7am for all of the final checks and here is Bennie now:

We were absolutely more excited and nervous than ever before!!    There are some side effects that could happen.  It essentially changes the way your immune system works so side effects are extreme fatigue, fever, rashes, possible colitis, and some other scary things your body could do to attack itself.  But usually this drug is tolerated ok.  We will see.  Bennie is getting the infusion right now, and it really is a complete miracle how everything came together all at once and worked out.  We know who is responsible for that miracle, and we thank HIM for the opportunity.  There are so, so, so many people trying to get this drug right now and for us to be doing this right now is AMAZING.    It doesn't feel real at all.

We are nervous for the side effects, and for the fact we will be traveling here very often to receive these drugs.  Dr. Weber said with this combo that Bennie has a 75 percent chance of still being alive in a year. Well that's a lot better odds than we had before, and we are praying for a positive response to these meds!!

Thank you so much for all of your thoughts and prayers, because without them we wouldn't be here!!!

Still Complicated

Unfortunately since the last post not much has changed, and we still don't know much.   Bennie had his MRI of his pelvis, but it was not conclusive enough to say for certain if the lesions were active melanoma metastases.  In order to be certain Dr. Weber, from Moffitt, said Bennie would have to have a bone biopsy of one of the bigger lesions.  We called his Melanoma team from MD Anderson and after spending a couple of days getting all of the Medical Records and CD images to them Bennie was finally scheduled for his bone biopsy.   He just had that done on Thursday morning.  Everything went pretty well with that.  We got to MD Anderson around 7:45 and at 8:45 he went back to the biopsy room with some sedation to help him relax.  They put him through a ct scanner and located the lesion.  Then they inserted the biopsy needle, and put him back into the ct scanner to make sure it was in the correct place.  They had to hammer it in once they were sure it was were they needed to be, and got a sample of the bone.  The whole thing took about 45 minutes.  Bennie was a bit sore the next day, but not too bad!  We will be getting those results of the bone biopsy on Thursday at his Dr.'s appointment.  That appointment will determine if Bennie could possibly still go for the trial in Florida, or if he needs to start on a different treatment.  So next week is a big week coming up.  He also has a brain MRI on Monday night, and we will visit with his neurosurgeon on Tuesday morning to see how all that is coming along.  If either the brain MRI or the biopsy show any melanoma tumors at all then Bennie will not be eligible for the trial in Florida, and we will be starting some type of treatment at the end of the week.  We are very tired of all the waiting, and we are anxious about what the next steps will be in the melanoma journey.  We both wish we could fast forward to the end of the week, because it's always easier knowing all the information and being able to put a plan in place and START!!!!!   We still really, really want a shot at the trial in Florida so there is a lot of anxiety going into this week. 

So prayers are appreciated for everything to be CLEAR!!!!!!!!!!!

Hopefully we will have all the answers that we have been waiting for by Thursday.