It's Complicated

Bennie and I are back from visiting Moffitt in Florida, and were able to get there and back safely.  We got there around 10 am on Thursday, and went directly to Moffitt for Bennie's ct scans of his body.  Here is a picture of Moffitt Cancer Center:

Everything went well there, and we left to go find our hotel and also head out to a Valentine's dinner that Bennie had scheduled for us.  We went to the Salt Rock Grill, which is the same restaurant that we went to the last time we went to Tampa.  We had a lovely evening, but we were tired and anxious for the results of everything at the Dr.'s appointment the next morning. 

We met with Dr. Weber the next morning, and started to talk to him about the clinical trial that we wanted to get accepted into.  He said in order to get accepted into the trial you have to have clear scans from head to toe.  Unfortunately, Bennie's scans did not show that.  His Ct scans showed no tumors in any of the vital organs; which is good news!!! However, there were about 14 different bone lesions scattered around the spine and pelvic bones.  They were mostly sclerotic, which means they could potentially be old/healing bone metastasis.  But they could also be active tumors.  Ct scans aren't really good at showing a clear picture of the bones.  So, in order to determine what these lesions truly are Bennie has to get a MRI of those areas to look closer at what it is.  If they are old or healed up bone mets, or something benign, then Bennie still has a shot of getting into the trial.  However, if they are suspect for a bone metastasis then he will have to get on board ASAP with a different treatment.  So, Bennie is having a MRI done on Monday, and the report will get faxed to Dr. Weber to determine what Bennie's status is.  It's not the answer we were hoping to hear, BUT we still have hope that he can perhaps still get into the trial.  Also, Bennie's brain MRI that we brought from MD Anderson showed some sort of nodular something that has to get re-read by one of Moffitt's radiologists to determine if that is something benign in nature or if that is his tumor still there.  So all that to say is we still have many, many, many more hoops to jump through before he can move forward with all of this.  Next week will bring more answers that we are anxiously waiting for.  It stinks not knowing, not being able to plan, and just never knowing what this disease will bring.  We just have to have hope that something will work, and whatever treatment he goes on next will be the right one.  We have to keep hope that it will work really well, and provide him a very long normal type of life!!!!  It's all out of our hands at this point, and we will just pray from here that Bennie is being led to wherever he needs to be!  We definitely couldn't do this if it wasn't for all of our family helping so much with Emmi and Colby whenever, and wherever we need them!  WE are so so blessed to have such a strong support group!!  Emmi and Colby were very happy to have us back (although they had a great time getting spoiled by grandparents and Aunt Heather), and we were just as excited to see them!  No matter what type of anxiety, frustration, or sadness that Bennie and I get from all this Melanoma crap, those two little smiles just make everything better! 

Timing

So I'm going take everyone back to last week, because I haven't posted since then.  About a week ago Bennie and I were watching the Bachelor on TV.  Bennie likes to watch it with me and he does a little commentary the whole time making fun of how dramatic the girls are..... It's pretty funny.  So, one of the ladies had a mother that died suddenly of melanoma that spread to the brain, and she was telling her story.  Bennie and I paused the show and started talking about how scary it is that his has metastasized to the brain, and discussed our treatment options going forward. 

A little background lesson on the drugs: (may be boring to some)
The clinical trial that we wanted so badly since the beginning of his diagnosis seemed near impossible with his recent brain tumor and lack of measurable tumors in his body.  If you have brain tumors it really weeds you out of a lot of available clinical trials, because drug companies want a perfect patient who will do really well on their drug, so the results will be good.... so it can ultimately be proven to the FDA.  We have been wanting to get into a trial of Anti Pd1 (experimental drug) combined with a drug called Ipilimumab (FDA approved).  Its probably the best trial to get into if you are a melanoma patient right now.  Response rates are around 50 percent, and most patients are able to get a durable remission of their cancer with the combo.  FIFTY PERCENT is AWESOME ... especially if you look back to his first treatment he had (the high dose IL2 in which he was hospitalized for a week at a time) which had a response rate of 5 percent!!!! The only way to get Anti PD1 is through a clinical trial.  It is not FDA approved yet, and probably won't be for the rest of the year or longer.  That is a loooong time to wait for a melanoma patient with limited drugs that work.  So, Anti PD1 has been doing clinical trials for a couple of years now, and many are closing up their trials to finish collecting their data for submission to the FDA.  Short story is there are no Anti PD1 trials open right now, and even if there were Bennie wouldn't qualify. 

Ok back to sitting on the couch watching the Bachelor.  Bennie and I were talking about what we would do next if his cancer came back.  Right now he is pretty much on a watch and wait type of treatment.  There are a couple of options if his cancer came back... go back on the pill he was on, Zelboraf, which may or may not last much longer, or try Ipilimumab by itself (which generally takes a lot of time to work and if you have a fast growing aggressive cancer its not an option).  So, not really great options.  We both talked about how uncomfortable we are about just watching and waiting, for something we know is not gone by any means, to come back at any given time.  When it comes back will it be a small tumor?  Will it go crazy like last year where in two months it was covering his entire body?  Will it go crazy in his brain and cause multiple tumors?  The timing of how and when it comes back will dictate which treatment he will get, and then we are on the clock to make that treatment work.  I told him if we want to be confident about our decision to watch and wait or take action and pursue a treatment we needed to just get a second opinion from Dr. Weber from Moffitt again.  IT'S HIS LIFE... THERE IS ONE SHOT TO GET THIS RIGHT.  So we need a collaborative effort.  So I emailed Dr. Weber and asked if he had any ideas..... or would we have to fly to see him to get his opinion.  Well, 5 hours later he emailed me back and I about fell off the couch.  He said if Bennie truly is without a tumor right now then he could qualify for a new trial he has which is the exact same trial we wanted from the beginning (anti pd1), but it is used as an adjuvant treatment.  Which means you have to have all of your tumors removed (Bennie's was taken out of his brain in December), and you must be free of disease.  The trial is looking to see if it can keep the cancer at bay as opposed to actually shrinking the tumors.  WHICH IS THE EXACT TYPE OF TRIAL THAT WE NEED, BUT NEVER EXISTED UNTIL NOW!!!!!  So, I emailed Dr. Weber back and he said that if we were interested we would need to come see him, and be able to agree if we got into the trial that it would be logistically possible to travel back and forth to Tampa every two weeks.  It will be hard if he does get accepted..... but we can't pass this up.  ITS A TRIAL THAT DOESN'T REQUIRE A MEASURABLE TUMOR, AND IS OK IF THERE WERE PAST BRAIN METS AS LONG AS ITS STABLE.  So this trial is essentially a pure miracle to us right now. 

First part of getting accepted:  making sure the brain is stable..... CHECK!!!!!
Bennie had his brain MRI last night, and we went in this morning to get results.   They came back good... everything is stable and no new tumors!!!  He will continue to get frequent brain MRIs to make sure this continues. 

Second part of getting accepted: Fly to Tampa next Thursday the 13th to get CT Scans of the body to make sure Bennie's tumors haven't grown since last scans in December. 

We will meet with Dr. Weber on Friday the 14th to get results of these scans, and discuss the possible trial Bennie could be a candidate for. 

We are very, very excited about pursuing this option, but nervous about all the logistics of it all.   But timing is everything.  We don't think all of this would be falling into place if it wasn't meant to be.  Even if he doesn't get into that particular trial we are still anxious to get another opinion on treatment options. 

Thank you everyone for your thoughts and prayers over these last couple hard months.  We are really filled with hope, and will keep you updated with the latest!