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: