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!