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We headed out to Tampa on Wednesday evening for Bennie's 12 week CT Scans and Brain MRI. 

                                         Here is us on the plane coming to Tampa

Thursday we spent most of the day at the hospital waiting for all the scans to get done.  We then spent the evening being completely nervous, trying to hold a conversation about anything other than cancer.   We woke up pretty early this morning to come back to Moffitt for the Dr. appointment to go over results, and to get treatment.  The Dr. came in and said that the brain MRI looked stable, but there are three new lung nodules that weren't there before 12 weeks ago.  These nodules could be melanoma tumors, or could be inflammation from the immune stimulating drugs he is getting.  One of the side effects Bennie has been dealing with is a lot of sinus issues/ clogged nose and inflammation in his head.  So, hopefully it has extended down into his lungs as well and that is all that the nodules are.  Unfortunately we don't know this for sure.  So, it is something to worry about until it isn't.  He will go ahead with treatment today, and another treatment on September 5th.  However, his next visit or the one following will have to include a CT scan of the chest again to see what has developed in 4-6 weeks.  If the nodules are bigger... then it is most like melanoma and he will get kicked off the trial.  If they are smaller or the same size it most likely is inflammation, and he should be able to continue getting the nivolumab.  The nodules are too small at this time to biopsy or do a pet scan to come to any further conclusions.... so we just watch and wait!!!!!! 

He just finished his 12th nivolumab infusion... and we are off to grab lunch and then go to the airport so we can go home to see our little munchkins!!!!  It's not the best news to go home with... but definitely not the worst!!!! WE are happy the brain is clear, and we will just keep praying these nodules clear up in the next month. 

Hopefully it can be life as usual for another month, and we can get Emmi and Colby into a nice routine with school starting up again!!!  I am going to miss my buddies at home with me all the time.  They are growing up waaaaay too fast!!!  I wish I could pause time and just live life forever how we know it right now ( well maybe yesterday before the Dr. came in haha) 

Moving Forward

The summer has been going well!  Bennie is feeling great, and he is officially off of disability and working full time.  Every year Bennie's family has a family reunion in Tennessee that we were hoping to attend, but unfortunately his Grandfather fell and broke his hip while visiting there.  Bennie's mom, Judy, and Grandparents (Pop and Granny)  went up a week before we were due to be there.  The day we were supposed to leave is when we found out that he would have to have surgery the next morning.   Since we were only planning on traveling there for a couple of days, we figured we would be better off here instead of in everyone's way while they were trying to care for Pop.  That happened July 2nd.... and currently Pop is still in the hospital very sick with an infection that happened after surgery, and his organs are failing because of all of this.  Judy is still up in Tennessee caring for her father a month and a half later.... and she was only planning on being there for two weeks.  WE miss them all very much, and hope to have them home as quickly as possible.  His parents are such a big support system helping with the kids through all of this and we truly appreciate having family close-by. 

Since airfare is so expensive in the summer, Bennie's parents were gone, and Bennie was feeling great we decided to let him go by himself to Tampa for the next couple of infusions.  I'm not going to lie it was tough for me.  Bennie did awesome.  He felt great, and came back home in less than 24 hours but its hard letting go of that role even for those two visits.  As his wife and caregiver I really feel that the only control that I have in this whole cancer mess is being with him for appointments, taking in all the medical information, and just taking all of that off of Bennie since he is already doing so much.  I can't sit in the chair for him and do the infusions, I cant do his bloodwork for him, and I can't take away his fatigue but I know at least I can help it out with being there for him emotionally and deal with the medical information side of it.  So it was tough.   I did enjoy the break of traveling, and just getting to spending time with the kids during the summer!!

Bennie's bloodwork looks great, and his liver levels that were elevated have all returned back to their normal levels.  His infusions were quick and simple, and we hope it keeps going like this for the next 2 years.  We go August 8th for his next infusion, and then we go August 20th for all of his scans/MRIs to see how everything is working.  If there are still no tumors he will get his next infusion that day, and then we keep chugging along for another 12 weeks!!! Scanxiety is starting to set in as we close in on scan day. 

A couple of weeks ago we also attended the funeral of Matt Lobaugh, who fought with stage 4 melanoma alongside Bennie as they were both diagnosed at the same time.  We were friends back in High school youth group at church before reuniting at MD Anderson over 10 years later to go through this rough time together.  Unfortunately a year into his stage 4 diagnosis the melanoma was too rampant to get into the trial that Bennie is in... and it sucks that not everyone is offered treatments that aren't approved by FDA.  Hopefully, more and more research and trials to treat and CURE melanoma keep advancing.  WE, the melanoma community, really need it!!! 

Dad and daughter trip

Emmi has been having a hard time adjusting to us leaving for Florida every two weeks.  She gets herself worked up a couple of days before we go, and it's hard for us too!! She went to Florida with us by car the week that Bennie was enrolled into the clinical trial, because we had no clue how long we would be down there.  We only leave for 24 hours now, because we go by plane .... But Emmi was with us on the 22 hour car trip.  In her mind Florida is far, far away that takes two days to get to!  We thought it would be a good idea to let Bennie take her on one trip to Tampa, since now his infusion is only 1.5 hours long, and he hasn't ever had an adverse reaction to it (hopefully never will!).  We thought this trip would help her to process how quick the flight is, and how quick the Dr.s visit goes by.  She has seen Bennie at his worst in ICU before brain surgery, so we knew this would be a piece of cake for her.  She was also super excited to be his caregiver, and take over "Mommy's role". 

They left a little earlier the day before, because Bennie wanted to take her to do a little something fun other than a hospital visit!  We watched The Dolphin Tale (a pretty good movie if you need one to watch) a couple of months ago, only to realize that it took place in Clearwater beach which is right outside Tampa.  So, Emmi and Bennie went to the clearwater beach aquarium to see Winter and Hope (the dolphins from the movie).  They had an awesome time, and Emmi even got to demonstrate how Winter's prosthetic tail works (his tail had to be amputated due to infection).  

Here they are at the aquarium:

The next morning they went for Bennie's infusion.  Emmi was a champ at the Dr. and got to meet all the staff that takes care of him.  It was awesome to hear her talk about Mrs. Melissa (the nurse practitioner) and all the areas of the hospital.  Now when we mention something she can picture it in her head, and hopefully deal with everything better since she knows the routine firsthand!! I was glad to have both of them back home safely!  

Here they are during his infusion:

Bennie is feeling well, and getting more energy back since he is down to just the nivolumab (pd1) now.  His liver is still a little elevated, so he will get that checked here at home with blood work just to make sure it's staying at a safe level.  Hopefully he won't have to miss a dose because of that!  But so far so good!!

And it's Good!!!!

My oh my what a long week.  The anxiety from the impending scans hit the Lunsford household a week ago.  We were on pins and needles waiting to get to Florida to see how the cancer has been behaving since February, and since getting into the clinical trial.  Bennie hasn't had any scans in over 12 weeks (which is a century for a cancer patient) and we were ready to take a peak inside to see what was going on!! 

We left for Florida on Wednesday evening this time, because we had to be at Moffitt bright and early on Thursday morning for CT scans of body and MRI of the brain.  All the scans were done around noon, and so it was time for us to wait a couple of hours before meeting with the Dr. to get the news.  Bennie has to fast for the CT scans so he hadn't eaten since we woke up, so we ran to a pizza eatery for lunch.  Bennie was pretty hungry, but I couldn't even get down a couple of bites because I was so nervous I wanted to puke everywhere.  It's pretty much like someone announcing the lottery and you have all the numbers, but then they say "And the winning number is..............(drumroll goes on for two hours)", and you are waiting for two hours for the winning number.  You can cut the tension with a really dull knife. 

They put us in a room, and literally all you hear is tick tock, tick tock, tick tock from the darn clock for 30 minutes until someone finally walks in!!!  Thank goodness already give us the news!!!! But its not the Dr. its some guy who wants to enroll Bennie in a trial to basically use leftover blood and whatnot that they have already taken for other research purposes.  Fine, whatever, give us the consent forms and go get our Dr.!!!!! Another day or two passes (15 minutes maybe), and finally the Nurse practitioner walks in.  She says everything LOOKS GOOD!!!!!!!! Nothing new was found on the brain MRI, and CT Scans are good enough to keep on keeping on in the trial!!!!

As I am trying to catch my breath from not breathing for an hour or so..... complete exhaustion takes over.  After you get good news like that you literally feel every tense feeling finally relax and you can breathe from relief.   Months go by and you are anxious about treatment, and finally you get news that can get you by the next few weeks.  It suddenly feels like we can plan more than one day at a time.  We can maybe make plans for 3 to 4 weeks out!! Obviously side effects can pop up at anytime, but the good part is we know at least for the next couple of weeks he won't be in the hospital for a brain tumor or something like that.  You automatically just want to sleep and eat, because it's something that hasn't been done for a couple of weeks leading up to this stressful day!!!!

We head towards the infusion center after getting the AMAZING NEWS!!!! The infusions only last an hour and a half now that he is only getting Nivolumab (Anti pd1). He is now getting an increased dose of the nivolumab at 3 mg instead of 1 mg.   After the infusion we celebrate with the small amount of energy we have by stopping to get dinner on the way back to our hotel room.  We actually stayed in a different hotel this time, because we were trying to rack up points with Southwest Airlines.  This hotel had a deal where you get 5000 points if you stay there so we jumped on it!  It is right on Tampa Bay and looks over the water.  We got back to our hotel, and to our amazement dolphins were jumping all over the bay.  There must have been 10 dolphins right outside our balcony.  It was pretty neat. 

We walked down to the pier to get a closer look, and I had a very surreal moment.  I was watching these dolphins jump and play in the prettiest sunset, this live band at a restaurant behind us was playing the song "Every little thing is gonna be alright", and it was storming behind the hotel.  It just made me sit and think that there are going to be beautiful times in our life, even when a storm is brewing all around us.  Even with this cancer journey encircling us at all times, we still have beautiful moments all throughout it.  Everything is gonna be alright even if the storm comes upon us, and the sun goes down.  All in all it was an awesome day, but then Bennie started to feel a little feverish like he does most nights after infusions.  After some Motrin, and a good nights sleep he felt better in the morning!!!  Thank you for all your prayers..... we couldn't go this alone..... and we thank God everyday that we don't have to.  We also are so thankful for all the beautiful moments that we get during this crappy cancer storm.  Because some people in this same storm don't get as many beautiful moments as we have been blessed with. 

On Wednesday we learned that our good friend we have known since highschool at church, who also started this cancer journey the same time that Bennie did, is having his hardest time with melanoma.  Bennie and Matt where hospital room neighbors at MD Anderson when they were both admitted for their two week stent for treatments last January.  Bennie was able to talk with him and give him some encouragement, as he is in the hospital fighting for his life.   He may come home soon and will go on hospice to help with the pain he has been having, and to support him since he cannot have any more treatments in the current state he is in.  It's really hard for us, because he has been through this battle since the beginning with us, and we simply cannot imagine him not being here for the rest of it.  It's not fair that we get good news and he gets bad news.  However, we do trust that God is working through his life just as he is working through ours.  We know Matt has a strong faith, and we are praying for him and his next steps in this journey.  Please pray for peace and comfort for him and his entire family, and it's never too late to pray for a miracle. 

Back in the Sunshine State

We are back in Tampa right now and Bennie is getting his fourth and last infusion of yervoy and fourth (and hopefully more to come infusion) of the anti pd1 drug.  They did a chest x-ray and bloodwork and everything looks great!!!! Wahoo!!! So we will see if he gets any side effects from this round of drugs.  Hopefully it is smooth sailing for the next few weeks. 

In two weeks he will be getting his body scanned as well as a MRI of his brain to see how well this drug is working to keep the cancer at bay.  If he has any tumors pop up then he will be kicked off the trial.  This is a real nail biting time for us!!!!!! The next two weeks are going to be filled with anxiety as our minds play the "what if" scenarios like a song track on repeat.  There is so much going into these scans.  We came into this trial mainly for the chance to get the anti pd1 drug that is not FDA approved.  He has been getting that drug for the last 12 weeks, but only at a minimal dosage of 1mg.  If everything looks good on the next scans then he will just be getting the one drug, anti pd1, but at a higher dosage of 3mg.  So the more we can get of that the better, because we can't get it without being in a trial.... and it probably won't be FDA approved until October. 

The ASCO ( American Society of Clinical Oncology) Meeting is also in two weeks.  The conference is when all of the clinical trials from the past year are presented with the newest information and results.  The next years clinical trials and treatments are typically based off the presentations and results from this conference.  I am such a nerd I would love to be a part of it .... but for a normal joe shmo it would cost me 1500 dollars or so.  So I will pass. We won't see Bennie's Dr. the next trip because he is a part of the presentations, but he will be waiting close by for an email update from the Nurse Practioner to give him an update on Bennie's scans.  EEEEEE!!!!!

We are almost done here with the infusions, and then we are off to catch our flight back to Houston.  Tomorrow morning Emmi starts her first swim meet!!! It is exciting, because it is something Bennie and I enjoyed growing up.  But also kind of scary, because we don't really like her to be in the sun all that much.  Since Bennie has melanoma, the genetic potential for the kids to get it at some point is substantially increased.  We have a tent, loads of sunscreen, hats, sun shirts, and are as prepared as we can be to keep all of us covered up.  Hopefully we will be able to share with others at swim team the importance of staying protected as well, because I am sure someone will forget sunscreen and become lobster red.  I may just go around wearing a sign for free sunscreen, and squirt random people with sunscreen who may be getting toasty!!!!! I didn't read that in the code of conduct for the swim team!

Tiredness for the Lunsford's

I'm really not sure where to begin to update everyone!     Since the first infusion Bennie has had a cough and sinus congestion.  It continued to get worse, and then on Good Friday Bennie came down with a fever of 102.  After talking to his Dr. (who had already given him one prescription of antibiotics to try and clear it up to no avail) we decided to go to St. Lukes ER to get him looked over.  He was diagnosed with pneumonia, and they gave him an IV antibiotic and a prescription for the rest of the week to last until we went back to Tampa the following  Friday.  We went back to our regularly scheduled visit in Tampa on April 25th for his third infusion of yervoy and anti pd1 (nivolumab).  The Dr.'s checked him over, and did another chest x-ray since he was continuing to have fevers the entire week.  His x-ray looked good and the Dr. thought the fevers were more than likely a side effect of the drugs he is on the clinical trial for, and is a common side effect for one to get.  More often someone taking these drugs may get a fever here and there, but Bennie has been getting them consistently around the clock.  We got the infusion, and flew back the next morning!  Right after we got home he had 101 fever again.  The entire next week he was down with fevers.  We finally got him on a dosage of Motrin and Tylenol every 4 hours that kept the fevers at bay by the weekend after his third infusion..... but then he started having headaches!   UMMMMM headaches don't really go over well in this house, especially since the last headache he had his brain was hemorrhaging, herniated, and about to explode from a 3 cm tumor in his brain.  Bennie was quite nervous about this new finding. 

Here is where the caregiver side of the story comes in.   After 3 weeks of Bennie having a fever and being pretty much out of commission with everything.... I was tired!!  I started to get frustrated when we would be starting an activity (bathtime, dinner, going to the park etc.) and Bennie would get the "I'm not feeling well look in his eyes".  I felt bad for getting so frustrated (not at him but just at our situation because we all missed him being around and we were sad) and I prayed and prayed to God that he would give me some extra compassion so I wasn't so short tempered at the kids and Bennie.  I started coming down with a cold a few days after praying I thought, but then the same day it started turning into more of a fever/flu type illness.  I went to the Dr. and got some meds, but I just was ready for some loving to come my way.   I really was in no mood to care for anyone.  I felt awful with a fever, and then I realized I think God is helping me with my compassion issue by letting me know how Bennie has been feeling!! Well we trudged up to the ER at MD Anderson since it would be the quickest way to get Bennie's head checked out, and they were really focused on Bennie's ongoing pneumonia and fever.... so they admitted him.  Luckily, thank heavens, there were no large tumors about to erupt Bennie's brain according to a CT Scan of his head.  But there was a significant sinus infection.  The antibiotics went on throughout the night.  When the nurse came in the middle of the night and asked "How is your head" I almost answered "oh man its killing me" but then realized they were asking Bennie!  Ha!  We never saw a Melanoma Dr. while we were in the ER, but one finally came by to see him in the morning.  She was familiar with the clinical trial he is on, and felt like the chest x-ray wasn't too bad, and since he hadn't had anymore fevers over the night she let him go with yet another prescription of antibiotics for the week to target the sinus infection.  She and his Dr. in Tampa feel like the fevers, cough, sinus, ect are more than likely all side effects of his immune system ramping up into overdrive.... and he will have to tough it out as long as its not getting worse.  If it gets worse they would give him steroids to calm down the immune system,  but that also would delay treatment and undo what we've done the last few weeks so to speak.  So he must try and muster through this.

So, no fevers since being discharged from the hospital!!! Hopefully the majority of the fevers he was having wasn't due to the drugs... maybe is WAS a sinus infection.  WE will see.  We go back for the fourth infusion of yervoy and anti pd1 this Friday, May 16th.  It will be the last time he gets both of the drugs together!!! Then in two weeks we will fly back to Tampa and Bennie will get scans to see if this treatment is doing its job by not letting any new tumors grow!  If he has no tumors he will just get one drug (nivolumab) every two weeks.  If he has any tumors he will get kicked off the clinical trial, and we will be knocking at MD Andersons door to see what is next.  PLEASE pray for good results in two weeks.  WE want to stay on this trial for as long as possible, because this is the best treatment out there right now for melanoma.  We worked so, so, so hard to get to these drugs!!  There aren't a whole lot of extra options if this doesn't work....so we are very anxious for the scans coming up!!!! Also, please pray that Bennie won't have the fever side effects this next round, because it really throws him out of commission with everything!  Going to work,family, living life is pretty much on hold when you are shivering away with your body aching and feeling like complete crap!  So, hopefully the antibiotics helped that issue and the fevers will stay away!! Now I know how bad Bennie feels with fevers, and I may think a little harder with my wording when praying to God to give me more compassion next time (but he sure gave me some extra)!!!

Here is a pic of Bennie in the hospital after they said his brain looked alright:

IPI/PD1 Dose number Dos

We woke up quite early this morning and flew to Tampa for Bennie's second infusion of ipi and anti pd1.  We stopped by for some lunch after we got off the plane because we knew we would have a long day at the hospital.  We got to Moffitt and Bennie had some lab work, and we met with the nurse practicioner.  She said everything is looking great, and Bennie's labs looked perfect.  She sent us down to the Clinical Research Unit to start the medications, which lasts about 3 hours.  Then we will go to our hotel and chillax!!!

Bennie and I waiting out the 3 hour infusion! 

So last month went by pretty quickly, and with relatively few side effects.  He's been battling a sinus/chest cold for the last month that isn't getting better quickly so she gave him a Z-pack to kick that out.  He also has had some fatigue, which is one of the biggest side effects to be expected with both of these drugs.  Other than that it has been ok!! The side effects tend to show up with each subsequent infusion, so we are to be on the look out for anything we need to report.  Some things can be quite serious, so the earlier it is caught the easier to treat in some cases. 

Our next trip back out here for Infusion number 3 is on April 25th (granted no side effects throw him off schedule), then we come back May 16th for infusion 4, and then we come back May 29th for scans to see if this is working!! If the scans look good, and he has no new tumors, then he can continue with just the anti pd1 infusion every two weeks (instead of every 3 weeks).  So we will see what all this brings for us....but we are so blessed to have this opportunity.  We met a guy today in the waiting room that also had brain tumors resected and also had a couple lung mets pop up in November.  He travels here every two weeks and just the anti pd1 drug has shrunk his tumors by 80% (and the brain has been clear since the middle of last year)!  So great news, and positive stories are so awesome to hear! 

We love, love, love everyone here at Moffitt from the patients, nurses, doctors, and staff!   We can't wait to fly home to our sweet little ones tomorrow who are very much enjoying their time with cousin Trey, Aunt Heather, Mimi, and Pops!! 

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. 

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! 

Post gamma knife

Happy cancerversary to my brave strong cancer fighting warrior!! A year ago we found out he had progressed to stage 4 and this year has not come without its battles!! 

Well it has almost been an entire week since Bennie has had Gamma Knife.  The day after Gamma knife Bennie was pretty sore and swollen.  He has been pretty tired, and maybe even some short term memory issues probably due to some irritation of what they treated.  All in all not too too bad..... I mean we haven't had to go back to the hospital so that's good 😄!!!! We saw his regular oncologist the following day and they said his chemo is going well via the Bloodwork...his Liver isn't freaking out!  Bennie still gets nauseous at times and is tired, but chemo is chemo....not fun!!!  Colby ended up with some virus on Friday night that had us worried he could have appendicitis, but he pulled through and didnt have to go to the hospital for that.  But I did have to go to the hospital for my sweet mother.  She had a kidney infection and stone that turned on her, and she got a resistant bacteria that wouldn't go away.  She had 103 fever for an entire week, but thankfully was able to come home today.  She will be at home for 2 weeks getting IV antibiotics.  Guess who gets to practice more nursing?  A nursing college should give me an honorary degree.  Anyone?   It seems like life hasn't stopped sucker punching us for 6 entire weeks!!!!!!  Bennie and I are hoping to get back into a routine of some sorts this week and for the next 3 weeks or so.  He is starting to go back to work this week, and we don't have an appointment at md Anderson for 3 weeks.  He will go for a brain mri around the first of February to see how gamma knife treated him.  We are hoping they treated the right side..... Because the opposite side of his head has been a little numb and his hair is hurting on the wrong side.  Hmmm we will see.  The next couple of weeks hopefully will be "normal" as we will be celebrating Colby's 4th birthday this weekend with family, and just cherishing our time together!! 

 

I can't believe he is four years old!!!!!

Edit:  I was about to publish this only to hear Emmi getting sick in her bed..... PLEASE PRAY Bennie doesn't get the stomach virus... He and I are the only ones left now 😥. And pray Emmi feels better too .... Poor girl.

Gamma Knife

We finally heard from the Radiation Oncologist that Bennie would be doing Gamma Knife.  We had a couple of days to prepare for that event.  I connected beforehand with some amazing patients who have previously gone through this, and they were kind enough to give us the 411 so we would be prepared!!!! So we decided to give back and give a very detailed step by step process for those that would like to know what the gamma knife experience is like!!

First off we had to go to a nurses visit and bloodwork yesterday (the day before gamma knife).  Bennie had to sign consents, and also get paperwork on what to do and what not to do the day of and after gamma knife.  Then they threw a little curve ball and told us that Bennie had to go upstairs to get an IV put in.  The Dr.'s get upset if the nurses can't get the IV started that day, because they have to end up canceling the detailed list of appointments and specially reserved gamma knife machine all because of an IV.  So, they make him get it the day before the procedure to make sure he is ready to go.  He got the IV and we went on home to explain to the kids why he had this object on his arm.  They were cool with it!!!

Next up is GAMMA KNIFE DAY!!!!

First thing Bennie did was change into some scrubs and then he went into a room with his nurse for the head frame placement.  I couldn't go in, because there is no room (so I made his nurse take the pics for us!)

Here is a pic of the screws that they use to screw the headframe into the skull.

 

 

 

First the Dr. and Nurse Practiciioner started fitting the headframe and marking with a marker on Bennie's head where the screws would go.  Then they started injecting a local anesthetic into the spots.  Bennie said it felt like a bee sting when each injection started, but quickly subsided.  All four spots that the pins would be screwed into his head were numbed with the medication.

 

 



Once the spots were numbed up Bennie decided to call it a day, and he left to go play golf.  Just kidding, he wishes.  Next up.... The Dr.'s started the hard part of getting the pins started by hand tightening them into Bennie's head.  Bennie said at this point all he could feel was pressure.  As they started screwing it in tighter Bennie could tell some anesthetic was not strong enough in the back part of his head, and so the Dr. just injected more anesthetic to make it comfortable.   

 

 

After the frame was tightened enough by hand, the wrenches were pulled out to really make sure it was tightly in place and not going to move!!!!!

 

 

 

Bennie said the wrenches caused a huge amount of pressure, and it felt like someone had put his head in a vice and it was about to explode.  But after about 5ish minutes it started equalizing and it was just a fair amount of pressure.  Next, the Dr.'s started measuring with different hats to make sure that Bennie could fit in the MRI and gamma knife machine with his headframe in place. 

 

 

This picture is of a hat that is used to make sure your head will fit in the gamma knife machine, and sometimes the length of the screws will need to be replaced depending on if you fit.

 

This picture is of a hat that a physicist comes in to measure distances so they can come up with a treatment plan with the radiation oncologist. 

(The long thing sticking out at the top is not a screw...its a ruler!)

 

And this is what the Bennie had to wear into the MRI machine.  This is worn as a coordinate mapping system so that Bennie's Dr. can look at the MRI and program the exact areas where the radiation will go.    The reason the pins have to be so tight is because the headframe cannot move the entire day!!! Everything is based on the positioning of this headframe, and if it even moves a slight millimeter then the radiation will not be put in the right spot!!!!  The radiation beams are precise down to 3/10 of a millimeter.  We are lucky to have one of these machines in our town, as there are only about 200 in the world (and MD Anderson ones one of them)!! The man that went before Bennie was from Canada!!

 

After all of this Bennie went into the MRI machine for a shorter amount of time than normal.  A normal brain MRI usually takes about an hour, however this one took about 30 minutes.  Bennie said the sound is about 10 times louder with the frame on, because it has an echoing effect.  Also, there is a smaller tube that your head goes into with the frame, and it all goes into the MRI machine.  Then Bennie was taken to a hospital room to wait for his radiation oncologist to plan out the radiation treatment based on his MRI.  It usually takes a couple of hours, so Bennie got to rest and eat breakfast (which proved to be difficult with the headframe on)  For those that would like to lose weight this may be an alternative treatment to working out...albeit a more painful one. 

 

 

 

 Here is my handsome husband patiently waiting for the Dr. to program the radiation machine.  During our wait time we renewed our vows, and he knocked me out when he was supposed to kiss the bride.  Just kidding we just talked and joked, and I didn't try and kiss him...... the nurses are far to nosy.

 

So we waited for almost 3 hours before the nurse came to bring him back down to the gamma knife area, because his Dr.'s were finishing up the treatment plan.  We got the good news that there were no new tumors in the brain since surgery, and we were just going to treat the surgical bed area.  WHEW WHAT A RELIEF!!!!!!!!!!!  The nurse said the radiation treatment would take 95 minutes.  Also, the Dr. told Bennie he could lose a patch of his hair where the treatment is, and it may or may not grow back.

 

They took Bennie into the gamma knife room and got him locked into position onto the "treatment couch".  Bennie disagrees with their term of treatment couch.....it feels like a cheap futon couch from your college days.   Then the physicist and radiation nurse make sure the headframe will fit in the machine with the matching coordinates from the treatment plan.  

 

Here is the nurse making sure his frame fits.  They swing that red arm around his frame 360 degrees to make sure it doesn't hit anything.

 

It didn't fit, so they had to take him back out and reprogram some parts of the treatment plan..... which took another 30 minutes.  We chatted a bit while they did that, and then they took him back in for take 2.

 

 

He is all ready to go!  The doors open up behind his head and the table slides back into the radiation beams.  The table slides back and forth and up and down while beams of radiation are put into very precise spots over 95 minutes.  Luckily, two weeks ago the radiation machine's source code was updated which cuts treatment times in half!!!!! Otherwise, Bennie may have been in the machine for 4 hours prior to that update (that would be really really hard to stay still that long; however they do have a pause button and have the ability to let you walk around if you get too restless). Bennie got to listen to music (you can pick out any station on Pandora), and try to sleep.  He was getting very impatient towards the end and called to the nurse HOW MUCH LONGER!!! His nurse said, "You have one minute!"  Bennie was thankful, and they took him out and then the Dr. removed the headframe.  Bennie was surprised to feel that the same pressure to put on the headframe was present when they were taking it off!  But it was quickly over after the pressure equalized in about 5 minutes..... although he still felt like he was wearing the headframe for an hour or so.  They moved us to the same room where Bennie waited before, and he got to eat a little late lunch and rest for an hour to make sure he was good to be released. 

 

Here is Bennie waiting to go home, and his headframe is gone!! They wouldn't let us take it home because it costs 75,000 dollars. 

 

 

They gave him a steroid in his IV to prevent any brain swelling that could occur, and gave us our discharge papers.  The pin hole sites were oozing Neosporin and the local anesthetic that had been injected earlier.  They gave us gauze to catch the oozing for our way home.  He will sleep elevated for the first couple of nights and swelling around the pin hole sites is common.  We will see tomorrow how he is feeling!!! We are both glad that is over, and he has one more cancer treatment under his belt.  Hopefully this will be IT for a long long time.  His next brain MRI will be in about a month to check on how everything is healing.  He is still taking Temodar (oral chemo) every night, and will keep doing that for 4 more weeks then he will take a two week break.  Then he will restart that cycle again as long as it seems to be working!  So far side effects are minimal with the exception of fatigue, some nausea around the time he gets hungry, and did I say FATIGUE?  He's been through a lot the last 5 weeks, but HE IS A TROOPER. 

 

 

 

 

 

 

 

 

 



 



 

 

 



Crazy Times

Sorry for the lack of updates.  It has been a nut house around here!!!  I'll begin with the week after I left off.  Bennie's PET Scan results from the body were great!  No tumors were found within the body, and so at this point we are solely focusing on keeping the brain clear.  We met with his oncologist who recommended that Bennie begin taking a chemo called Temodar.  It is one of the only chemos that crosses the blood brain barrier.  Temodar is not FDA approved for the treatment of melanoma in the brain, but essentially it is for other brain cancers so it could be useful in treating melanoma as well.  It's not a great option, but it is something that has worked for others for awhile.  So we will try it!! Temodar is a pill that Bennie will take each evening, about 3 hours after dinner.  He has to take anti nausea medicine beforehand to keep from getting sick.  The side effects aren't as bad as the chemo he was taking last summer, but could make him more sick to his stomach and make him tired.  His oncologist is not recommending any other type of treatments for his body right now, and he will get another scan in a couple of months to keep an eye out in the body for tumors to pop up.  So Bennie was going to start taking that medicine but his liver levels were sky high!! So much so that the Dr. thought that the machine was broken or made an error.  It was determined that Bennie's liver didn't like all the Tylenol after surgery, and he was to lay off Tylenol for a week so he could have blood retested to see if it would be safe to start chemo then.  We were pretty excited that he wouldn't have to start chemo until after Christmas!! Wahoo!  But then the very next day Emmi got a fever of 103.  I rushed her to the urgent care to try and get medicine to prevent her from spreading it to Bennie.  She tested negative for flu and strep, but they said it could still be too early to tell.  Emmi had fever for the next 4 days.  Then Christmas Eve comes along and Emmi is beginning to take a turn for the better!!! YAY!! But then Bennie starts coughing, and I feel his forehead and he is burning up!! NOOO!! NOT CHRISTMAS!!! I was so fearful he would have to go back to the hospital.  He had a fever of 101.... and he wasn't supposed to have Tylenol or MOTRIN!!! Well, I gave him a couple anyways so we could at least enjoy Christmas.  The morning after Christmas I took him to the urgent care center and he tested positive for the flu and strep (which means little Emmi had it as well... I just took her to early).  So he got a shot, antibiotics to take for 7 days, Tamiflu, and cough syrup.  The next day we had to go down to MD Anderson to meet his radiation oncologist.  She really didn't have a decision about what type of radiation to do (whole brain or gamma knife) because his Dr. (neurologist) is on Christmas vacation for the next week.  She went ahead and put him on the schedule for the end of January for gamma knife....because the schedule was filling up quickly.  So within the next few days we should have a solid answer on what type of radiation Bennie will be getting on the brain.  Also, his liver levels have evened out and he took his first Temodar pill last night.  So far so good.... no nausea or vomiting.....but it may be more of a cumulative effect.  The more meds that get in your system the worse you feel.  So, we are praying for no side effects from this drug.  We are also praying that the Dr.'s are able to choose the appropriate type of radiation for Bennie to have, and that it will be easy on him.  And we are also praying that the brain is still clear from his last brain mri after surgery!!!!!!!  It's been a crazy month, and we are tired!!!!!!  Colby ended up with the flu this week, but got over it a little quicker because I got some Tamiflu for him beforehand!! WE are HOPING THE NEXT MONTH IS EASIER!! We need a little bit of a break!!!!