Oct 22-24 friday, saturday, sunday

i am very grateful to work for a place that understands what i am dealing with, and gives me days off for my hubby being sick :) they completely understood when i called in thursday night. :)

Well thursday night i was up checking Jasons temp every hour...it never reached 100, and we never heard from the drs {eww!!} so we called them again the next day, and of course all fo the trial dr's were out fo town until the 25! so we talked to the triage nurse, who made an appointment to see Jason's regular physician here in Logan. He had labs drawn then we saw his dr. The labs all came back good, so the dr just told us to keep an eye on the symptoms and of they got worse to go into the er {thanks for nothing!} jason's eye was still really bothering him, so after seeing dr huffman, we went n saw dr young, an ophthalmologist, who gave jason a prescription for a steroid type eye drop {which we never got filled, his eyes stopped hurting} but he did say jasons eyes looked all within the normal range!

Saturday-

Jason woke up with his fever, again! he moved from our bed to the couch, and slept all day! he finally woke up around 630ish i took hos temp again, and it was over 100. so i got him some tylenol and a cold rag n held that on his head trying to cool him down a bit, while he took his test for school...after taking his test his was just laying on the couch, and randomly just PUKED!!! all over EVERYTHING!!! he was covered, along with his laptop, blanket, and couch! {i am so sick of vomit!} so he went up for a shower, after that we checked his temp again...this time it was 101.6, so we went to the ER. the visit was about 5 hours {it is never any shorter} they did blood work, cultures to check for blood infections, from his port and arm {2 different areas that way if one comes positive its easier to find out where the infection is} and tried for over an hour to get a hold of the clinical trial people. but that never happened to we winged it {sort of} we had to wat for all the labs to come back to check liver function and everything before giving jason any meds. Finally when all the labs came back good {his white blood cells were a little high} they gave him some tylenol to help with the fever, and some anti nausea meds. after waiting a little while, the dr came in and decided to get a chest xray {thank goodness!} and come to find out Jason has Pneumonia! so they pumped him full of antibiotics, IV and pills then gave us the option to either stay at the hospital of go home for the night and come back..we went home! the hospital is like a 20 minutes drive, or a quick call to 911, so i wasnt too worried about getting back if something happened for the worse in the middle of the night.

Sunday October 24

we attempted to sleep in {but sleep doesnt come to easy.} so we checked jasons temp in the morning, and it was coming down! {it had started in the er, but by sunday morning it was below 99.5!} we chilled out on the couch for a little while, then headed to walmart to fill jasons prescription {zpak} then back to the hospital. it felt that we had sat there for well over an hour before the dr decided to do more antibiotics. When we first got there they couldnt decide if they wanted to do more antibiotics or not since he seemed to be doing so much better!} so the antibiotics finally got started and about 2 hours later we got to come home! they also did another WBC {white blood count} it had lowered from the day before so it was back to normal!

we never could get a hold of the drs for the trial, which really pisses me off, since they want us to tell them as soon as he starts to feel symptoms, but we cant seem to do that when ALL the symptoms start after hours!! but luckily none of what jason was feeling was symptoms to the chemo, it was all the pneumonia. so hopefully the next doses jason feels normal, and doesnt get sick!

Jason seems to be feeling much better, but is still exhausted and sleeps most of the day {but if i could i would too!}

October 21

well jason has been feeling pretty good since starting the trial friday. While we were there Steve had told us that the person who started it before Jason was having no symptoms. {jason is the second person to do the trial at ST Lukes} but we were also told that people doing it in Boise had to symptoms either. So we were pretty stoked, hoping that Jason would be the same! but...of course not that would make things too easy!

he hasnt been feeling the great the past couple days..but it got worse last night and really bad tonight. last night when he got into bed he had an extremely bad headache and his eyes were red and sore, and he told me that he had gotten up to puke in the middle of the night..well tonight is even worse.... he puking started early...around 730ish...took his temp of course he has a fever 99.6 he is also looking a little jaundice. so we called St Lukes to see what it is were supposed to be doing, but no one is in the cancer center after hours so they transfered us to internal medicine..which did NO GOOD she told us to call back in the morning. WTF!? so were waiting to hear back from another dr to find out what to do. we were told that the trial wouldnt cause a fever, so i am confused on what it is i am supposed to be doing...i tried talking him in to going to the ER but he doesnt want to..so i am waking him up every so often to recheck his temp.

He had been in bed for about 30-40 minutes when i heard him puking, i thought he had made it to the bathroom...i was wrong!! poor jason was covered...along with our freshly made bed...so he got in the shower n our bed was once again made with clean EVERYTHING! rechecked his temp still 99.6 so at least its not going up super fast... oh n to top it off he is extremely confused...he went to call ST Lukes, and handed me back the phone because he has no idea how to use it... {he used to have one identical to it!}

so this is my night...waking up every hour to take a temp on someone who just gives me dirty looks because he has no idea what i am doing...im hoping that i can get a little bit of sleep in n that his fever will go down so we dont have to visit the ER {we always end up being there for at least 5 hours!}

well that kept me occupied for a little while...time to go recheck a temp!

3rd hospital in less than a year?!

YUP! we were called by steve at ST Lukes in Twin the 13 n told that all of jason's labs came back good {he doesnt have HIV!!} so he was to start the trial on Friday the 15! {which kind of sucked since its a 3 hour drive one way, and we went twice in one week!!}

Friday October 15, first day of trial!

we got to twin around 1 for Jason's first treatment, and they didnt start until after 3! it takes an hour n a half to inject the drug, then we have to hang around for a whole hour after for observation! {every time!} so we didnt get to leave until after 6 which totally sucked! but hopefully worth it!

we were told by the main nurse on the trial that the drug is unknown to pass through the blood brain barrier. If he had brain surgery the blood brain barrier is broken so it would pass, but since jason has only had radiation it will not pass. BUT it hasnt been studied to see if it passes through or not.. the drug is supposed to train the immune system to fight against cancer cells, so if the drug works correctly the and trains the immune system there will be no problem with the blood brain barrier. they also told us that the drug can mess up babies to no getting pregnant while jason taking it n up to 6 months after {uh duh! seems to be the story of our lives..everywhere we go were told DONT GET PREGO!} steve {the main nurse for the study} told us only sex with condoms n spermicidal lube! {the drug hasnt been studied on fetus reaction, but they believe it can and will cause some major birth deffects!}

i think that is all we learned about the study..so if you have any questions really feel free to ask! {and if your embarrassed to ask publicly, try doing it anonymously or you can message me on fb or email schenk_hope@yahoo.com}

Meeting with Twin October 12

we met with the dr in Twin on the 12, to find out if jason would be accepted into the trial. we got there a few minutes late {go figure!} and of course had NONE of the paperwork for them {history that they mailed to the house, but we hadnt been home since early friday} so we had to fill it out there which sucked, we were rushed n it was just a pain! well after we finally got the paperwork all filled out, we went back to meet with the dr. she got our history{the hospital had misplaced it, thank god im psycho about keeping records of EVERYTHING from the hospital} so we pretty much just passed around our binder full of papers. The dr did a skin check {we were told she was going to do a full physical..but didnt} after meeting with the dr, and learning all about the trial, jason had labs done {all of his labs have to be done at the hospital in twin since its lab is certified by the government for a trial, which really sucks cuz it is a 3 hour drive!!! and labs have to be done at least one day before he is to be injected with the drug} we had to wait to hear back from the hospital, the next day, to know if jason was in or not...

Arizona October 8-11

i know its long over due...but i have been busy not to mention exhausted! :) We had such a great time in Arizona! {we always do!} we went down friday and spent the weekend with timari n the girls, then Sunday had a great day at a BBQ with all of our friends there! we had such a great time! thanks everybody!!

Monday we had an early start at the hospital, the took an x-ray of jasons chest {he has had a cough since the last visit to Arizona} it showed some fluid in his left lung so the dr put him on an antibiotic. He had labs taken, all came back normal! {which is surprising since jason has had all the chemo, his labs have always come back good!} Jason was given a stronger pain med for his head aches, his hydrocodone hasnt really helped too much :( so they gave him Dilaudid. {narcotic pain reliever} they also had him up his dexamethasone{steroid, but he has tried this in the past, it doesnt help} As of now he has only taken his Dilauded a few times so he hasnt exactly decided if he likes it or not..

Clinical Trial

We found a clinical trial in Twin Falls Idaho!! :)) {a little closer to home} We meet with them on October 12 :) the day after we get home from our last trip {we think} to Arizona. If Jason clears all of the qualifications he will begin the trial around the 18.

CA 184-045 study for Ipilimumab

The trial is a compassionate care trial which means everyone who qualifies will get the drug, no placebos given! {thank god} Jason will go n receive the drug every 3-4 weeks for 4 doses. scans will be done randomly throughout the trial to see if the cancer is reacting the way we want it to, if it isnt we will be advised to stop the trial and i guess go back to Arizona and start up chemo again... and if it works in our favor we hopefully will be given the option to receive another 4 doses. Jason will have his blood drawn before every dose, which we are so happy it isnt every week like now, since his blood draws have to be done in Twin falls. They are very persistent with NO getting pregnant while receiving this drug, since they have not studied the effects on the fetus.

Steve {the clinical trial dude} told us that the drug is a lot like the IL2 that Jason received in February {week of pure hell, thank god for my family being there} so were not looking forward to the effects of the drug, although we were told the main side effect people have are fatigue and diarrhea.{the drive will suck since there is NOTHING out that way so hopefully jason doesnt have to poop too bad!} they are also really worried about bowel perforation, especially since Jason has received IL2. Steve also told us that the drug has a 25% working rate {coulnt think of a better word} which is hella higher than ANYTHING Jason has received before or been offered! so were feeling pretty good/excited about this! :))

if you have any questions feel free to ask! i kinda shortened the info... A LOT...