Trial motions Updated 4/10/18 1:00pm
March 14, 2018 2:00pm Back to In the Beginning
I met with Karyn the research nurse and Dr. Vogelzang yesterday and signed up the clinical trial that includes either Keytruda or Tecentriq, but with NKTR-214. I will be getting Tecentriq. I don't know if Dr V. favors that or is putting all his patients on it, but it was developed by his company. One of his students from when he taught at the University of Chicago is leading the trial for NKTR-214 and is very excited about its efficacy in combination with either of the other two drugs. Have to go through two more biopsies in the next month, one before treatment and one after the first treatment. I opted out of the others they would have liked. It was their option, and it's the last thing I want to do. This trial could go on for 17 21-day cycles. It just depends on how I respond, maybe less, maybe more. I'm sure Dr. V is making a killing as the trial pays full rate, not the crappy contract rates of the insurance. He is going to check to see if he can use radiation for the cancer cells in my bones without disrupting the trial. He is continuing the bone hardener, Xgeva, shots.
Since I've been off chemo for so long, I can finally go near sharp objects without fear of bleeding out. Got my first haircut since December. It really wasn't that long, but definitely needed a trim around the sides at the least. There wasn't much the stylist could do with it, given how much I've lost; so I now have my first ever buzz cut. With a couple days of face stubble, I look like the 3rd mate on a garbage scow. Shampoo and conditioner never seemed so pointless.
April 4, 2018 4:00pm
Been a lot of activity over the last few weeks. Got a biopsy of the bladder tumor, innumerable blood tests, EKG, MUGA scan, PETCT Scan, paperwork, etc., and was accepted for the clinical trial. I finally started the immunotherapy treatment on Monday. Took all day as they administer several drugs over three hours, met with Dr. V, monitored for EKG and vitals the rest of the day. The two main drugs are NKTR-214 and Tecentriq. NKTR-214 is the trial drug; Tecentriq is already an approved drug.
Felt fine the next day, and Dr V was surprised that I didn't have any side effects. By night my fever started to go up slightly to 100.1 and stayed there at least till 1 am. It was back to normal by 6:30am. By 11:30am it was 97.5 and I was feeling achy. That didn't last long. By the time I got to Dr V's office at 1:30 it was back to 100.5. Had a slight rash on my chest that he said was from the fever. He said it's all normal.
He gave me some graphs to show how the lymphocytes were dropping and the monocytosis and eosinophilic leukocytes were increasing. Those last two are the cancer fighting antibodies.
I'll get monitored every day through Monday. On Tuesday I meet with the urologist to schedule a follow up biopsy; likely on the 18th. The first biopsy was to get a baseline before treatment and this upcoming one will show the affect of the drugs. Dr. V thinks the pain in the hip could be gone before we do another treatment. It has been pretty bad and he prescribed some hydrocodone-acetemin to knock down the pain. Mostly I take 1000mg of Tylenol during the day and save the hydrocodone for at night so I can sleep better. Subsequent treatments of the immunotherapy drugs are scheduled for every 21 days till I don't need them, so it's going to get pretty monotonous.
April 5, 2018 10:00am
Will just be a quick visit to the nurses today to take vitals. Temperature swings have been crazy. Got home last night and crawled into bed for a nap. Covered up too much and spiked my fever to 101.8. An hour after I got up it was back to 99.9 then at 11pm up to 100.1. This morning it was 100.3 when I first got up, then down to 99.9 an hour later then at work an hour later it was 102.1, then another hour later down to 100.4. Amazing part is that when I got up, the hip pain was mostly gone. I was even able to doze on my right side for awhile instead of having to stay on my back. I had better range of motion in my right leg and could lift it without assistance from my arm. As I was driving in, I noticed a bit of pelvic pain and some occasional pain radiating into the knee, but not bad. Hadn't taken a pain pill since 10pm last night. Sitting all day at work doesn't help. Asked Dr V yesterday about getting radiation for my bones and he said he can't do it during the trial, that they want a pure result...understandable. Plus if I stopped the trial and did the radiation, I couldn't get back on the trial. Now it doesn't seem like it will be necessary.
2:30pm
Went to the appointment and they weren't concerned with the temperature swings. They said I could take Tylenol for the fever or just ride it out if it's not bothering me. It's pretty low grade unless I do something stupid like bundle up. They missed my vein on the right arm for the blood test and had to poke the left too. I could tell them to use the Power Port, but that's even less pleasant. I could really use a nap and was tempted to ask if I could hang out in their easy chair in the research office for a while.
April 10, 2018 1:00pm
Well, these drugs are just full of surprises. Friday, the temperature swings started to diminish and just went up and down a degree or so. On Saturday, I got a haircut and as usual, my back was itchy from the leftover hairs that fell down my shirt. Later though, the rash started getting itchy...back, chest, arms, head. Took a shower and changed clothes and that didn't help. By Sunday, I'd had enough and took a Zyrtec which stopped the itching.
Woke up Sunday with a new problem - burning pain in the muscles mostly in the back of my legs, lower back, triceps and forearms. Seemed to get really bad when I stood still. 1000mg of Tylenol didn't even take the edge off. Met with Dr V yesterday and he just shrugged it all off. By Tuesday morning it seemed to subside a bit in those areas, but it was now bad in my biceps when I extended my arms. Itchiness was a lot less, but I still took a Zyrtec this morning. Dr V said he would only keep me in the trial for three more doses if it isn't having any affect by then. He mentioned a phase 2 oral medication he would try after that. I suppose that means a different clinical trial. That's a ways off and we've barely given the current trial's drugs a chance.
Met with Dr Kassahun to schedule another biopsy for next Wednesday per the request of the clinical trial. He thought I was just visiting him for a post-op follow-up from the last biopsy. I got his nurse to replace my nephrostomy bag which was starting to get ripe and also falling apart. I will need to get the whole nephrostomy tube surgically changed out again next month.
Next: Trials and Tribulations
I met with Karyn the research nurse and Dr. Vogelzang yesterday and signed up the clinical trial that includes either Keytruda or Tecentriq, but with NKTR-214. I will be getting Tecentriq. I don't know if Dr V. favors that or is putting all his patients on it, but it was developed by his company. One of his students from when he taught at the University of Chicago is leading the trial for NKTR-214 and is very excited about its efficacy in combination with either of the other two drugs. Have to go through two more biopsies in the next month, one before treatment and one after the first treatment. I opted out of the others they would have liked. It was their option, and it's the last thing I want to do. This trial could go on for 17 21-day cycles. It just depends on how I respond, maybe less, maybe more. I'm sure Dr. V is making a killing as the trial pays full rate, not the crappy contract rates of the insurance. He is going to check to see if he can use radiation for the cancer cells in my bones without disrupting the trial. He is continuing the bone hardener, Xgeva, shots.
Since I've been off chemo for so long, I can finally go near sharp objects without fear of bleeding out. Got my first haircut since December. It really wasn't that long, but definitely needed a trim around the sides at the least. There wasn't much the stylist could do with it, given how much I've lost; so I now have my first ever buzz cut. With a couple days of face stubble, I look like the 3rd mate on a garbage scow. Shampoo and conditioner never seemed so pointless.
April 4, 2018 4:00pm
Been a lot of activity over the last few weeks. Got a biopsy of the bladder tumor, innumerable blood tests, EKG, MUGA scan, PETCT Scan, paperwork, etc., and was accepted for the clinical trial. I finally started the immunotherapy treatment on Monday. Took all day as they administer several drugs over three hours, met with Dr. V, monitored for EKG and vitals the rest of the day. The two main drugs are NKTR-214 and Tecentriq. NKTR-214 is the trial drug; Tecentriq is already an approved drug.
Felt fine the next day, and Dr V was surprised that I didn't have any side effects. By night my fever started to go up slightly to 100.1 and stayed there at least till 1 am. It was back to normal by 6:30am. By 11:30am it was 97.5 and I was feeling achy. That didn't last long. By the time I got to Dr V's office at 1:30 it was back to 100.5. Had a slight rash on my chest that he said was from the fever. He said it's all normal.
He gave me some graphs to show how the lymphocytes were dropping and the monocytosis and eosinophilic leukocytes were increasing. Those last two are the cancer fighting antibodies.
I'll get monitored every day through Monday. On Tuesday I meet with the urologist to schedule a follow up biopsy; likely on the 18th. The first biopsy was to get a baseline before treatment and this upcoming one will show the affect of the drugs. Dr. V thinks the pain in the hip could be gone before we do another treatment. It has been pretty bad and he prescribed some hydrocodone-acetemin to knock down the pain. Mostly I take 1000mg of Tylenol during the day and save the hydrocodone for at night so I can sleep better. Subsequent treatments of the immunotherapy drugs are scheduled for every 21 days till I don't need them, so it's going to get pretty monotonous.
April 5, 2018 10:00am
Will just be a quick visit to the nurses today to take vitals. Temperature swings have been crazy. Got home last night and crawled into bed for a nap. Covered up too much and spiked my fever to 101.8. An hour after I got up it was back to 99.9 then at 11pm up to 100.1. This morning it was 100.3 when I first got up, then down to 99.9 an hour later then at work an hour later it was 102.1, then another hour later down to 100.4. Amazing part is that when I got up, the hip pain was mostly gone. I was even able to doze on my right side for awhile instead of having to stay on my back. I had better range of motion in my right leg and could lift it without assistance from my arm. As I was driving in, I noticed a bit of pelvic pain and some occasional pain radiating into the knee, but not bad. Hadn't taken a pain pill since 10pm last night. Sitting all day at work doesn't help. Asked Dr V yesterday about getting radiation for my bones and he said he can't do it during the trial, that they want a pure result...understandable. Plus if I stopped the trial and did the radiation, I couldn't get back on the trial. Now it doesn't seem like it will be necessary.
2:30pm
Went to the appointment and they weren't concerned with the temperature swings. They said I could take Tylenol for the fever or just ride it out if it's not bothering me. It's pretty low grade unless I do something stupid like bundle up. They missed my vein on the right arm for the blood test and had to poke the left too. I could tell them to use the Power Port, but that's even less pleasant. I could really use a nap and was tempted to ask if I could hang out in their easy chair in the research office for a while.
April 10, 2018 1:00pm
Well, these drugs are just full of surprises. Friday, the temperature swings started to diminish and just went up and down a degree or so. On Saturday, I got a haircut and as usual, my back was itchy from the leftover hairs that fell down my shirt. Later though, the rash started getting itchy...back, chest, arms, head. Took a shower and changed clothes and that didn't help. By Sunday, I'd had enough and took a Zyrtec which stopped the itching.
Woke up Sunday with a new problem - burning pain in the muscles mostly in the back of my legs, lower back, triceps and forearms. Seemed to get really bad when I stood still. 1000mg of Tylenol didn't even take the edge off. Met with Dr V yesterday and he just shrugged it all off. By Tuesday morning it seemed to subside a bit in those areas, but it was now bad in my biceps when I extended my arms. Itchiness was a lot less, but I still took a Zyrtec this morning. Dr V said he would only keep me in the trial for three more doses if it isn't having any affect by then. He mentioned a phase 2 oral medication he would try after that. I suppose that means a different clinical trial. That's a ways off and we've barely given the current trial's drugs a chance.
Met with Dr Kassahun to schedule another biopsy for next Wednesday per the request of the clinical trial. He thought I was just visiting him for a post-op follow-up from the last biopsy. I got his nurse to replace my nephrostomy bag which was starting to get ripe and also falling apart. I will need to get the whole nephrostomy tube surgically changed out again next month.
Next: Trials and Tribulations
