Trials and tribulations Updated 5/10/18 4:00pm
April 26, 2018 2:00pm Back to In the Beginning
Phew, been a hella couple of weeks. With the arm pain starting up the second week after the treatment, then followed by leg and hip pain. Ultimately found out that I have a hairline hip fracture that showed up in a CT. Likely due to the metastasis there. Scheduled the biopsy for the third week, but Dr. Kassahun wasn't available so Dr. Finklestein from his practice was scheduled. Also got to see Dr Kunal Parikh, a pain specialist who is a friend of my kids. He prescribed Gabapentin, Tizanadine and Morphine. Still haven't gotten the insurance approval for the morphine, but should be soon. Have had to take hydrocodone with the other two just to keep the pain at a tolerable level. Down to my last pill though. His pain chart makes so much more sense with the descriptive line under each emoji.
On April 18th at 11:30am I went in for the biopsy. I had to see Kris the PA at Dr Voglezang's office first thing that day to talk about the pain, so I just took the whole day off. Kind of a pointless appointment. Biopsy was uneventful. Dr.V's research staff came to pick up the sample, and as usual things were falling behind and they were stuck in the waiting room. So I told the nurse to let them back into the staging area. It was good they were there as they got to talk to Finkeslstein about what they needed and I think he adjusted his technique. He just took three tiny core samples about 1/4" deep and maybe 1 mm in width. The research staff came into the OR to be there when the samples came out. I had no bleeding in my urine afterwards like I did the first time, so this must have been less intrusive. He sent me home with a prescription for the antibiotic Bactrim which I started taking that night.
On April 19th, I woke up to go to work, but was feeling woozy and hot. Took some Tylenol and went to have breakfast. Took a bowl out of the cabinet and it fell right out of my hand. Cleaned that up and got another, took another bowl with two hands, and ate breakfast (cereal and milk). Decided to take my temperature and it was 101.5, so it was likely higher earlier. Decided to call in sick, but couldn't hold the phone, read the numbers, or dial. Kept dropping the phone. Speech was slurring too, so I had Mikki dial it, punch in the absence info, then text my boss. We called the cancer treatment center and they told us to check my BP. It was 70/45. So that explains the other symptoms. They had me come in and met me with a wheelchair. Took me straight to the cancer treatment area and hooked up saline to my port. Worked out well later as the port has gotten a lot of use that it wouldn't have it they hadn't tapped it. I kept passing out while they were pumping fluids into me. They got my BP up to 90/70, when Mikki called Lisa and told her what was going on.
Lisa said I likely had sepsis and drove over to take me to Summerlin Hospital. Checked in and they started an IV and ran a bunch of blood and urine tests to isolate the bug. Meanwhile they added some generic antibiotics to the drip. They found a room fairly quickly compared to other visits to the ER.
They ordered up Intervention Radiology to replace my nephrostomy tube on the 21st to eliminate that as a possible cause of the sepsis. That was a pretty quick procedure, but they forgot to close the valve on the bag and I got the bed soaked first time I went to get up. I was in the intermediate care unit, so the nurses are pretty top notch and were really attentive. Plus they aren't assigned many patients (sometimes 2), so they have the proper time to spend with the patients. Had a whole parade of docs come through - infectious disease - Dr. Alexis, kidney disease - Dr. Ryu, hospitalist - Dr. Meady.
They also found that sometimes when I was sleeping, my oxygen levels dropped to as low as 78%, so I slept with a nasal cannula with 2L of oxygen flowing. Have to see my primary care physician about a sleep study now. Ugh.
Ended up staying there through the 23rd when they finally isolated the bug on Sunday, stopped the other antibiotics and started the antibiotic Cefepime. They ordered up a case of it, along with Heparin and saline plungers for me to take at home and push through the port myself. I went to Southwest Medical on Tuesday morning to pick up the meds and get trained on the administration - take off the port cap, clean the port tap with alcohol wipe, saline, then Cefepime, then Heparin, then saline, then recap the port tap with a new cap, dispose of the plungers in a sharps container. 8 day supply, twice a day.
On Tuesday, the urine in the nephrostomy bag started getting bloody and the junction in the line started leaking when I was lying down. Made an appointment to see Kassahun, but soonest I could get an appointment was the 2nd. That's the last day on the Cefepime, so if he orders another antibiotic, at least I'll be done with one.
Dr. V's office is trying to find out the impact all this will have on my participation in the clinical trial. They may just want to wait a few days after the antibiotics get out of my system to restart the next treatment that was supposed to happen on the 23rd. I have an appointment to see him tomorrow as he is leaving town for two weeks, and just wanted to review my condition.
May 4, 2018 2:00pm
Meeting with Dr V on 4/27 went well. Funny part was when I told him that one of the docs in the hospital said my pubic bone had a hairline fracture. He responded with, "That's a good thing." I probably said something like, "How is that good news?" He said that it means that the immunotherapy has killed off the cancer in that bone and left a cavity. That didn't leave much bone behind to hold things together, so it cracked. We were both surprised at the size of the cavity - over 4cm, given that a pubic bone isn't all that big. He said I was cleared for the rest of the trial, that they didn't care about the antibiotics I was on.
So on Tuesday, I stopped at Southwest Medical for blood tests related to the effectiveness of the antibiotics. I still had one more dose of the Cefepime to give myself, so they left the PowerPort line in. I then went to my primary care physician to see about getting a referral for a sleep study, due to the oxygen levels seen in the hospital. Then finally went to CCCN for the treatment. Dr V was on vacation for 2 or 3 weeks and his PA got sick, so another doctor has been scrambling to backfill. He barely came in long enough to sign the forms to admit me for the treatment. The pain in my arms was still pretty bad as well as in my pelvis, pubic bone and down my legs. For some reason by Wednesday, a lot of the pain was gone and by today, mostly just numbness in my hands and some sensitivity in my right arm. Temperature has been all over the map. Within two hours it can go from 96 to 102 and back. Pretty much slept as soon as I got home last night and still didn't feel rested this morning. Feeling better than most days today. Not going to hazard a guess what the next few days will bring.
A friend of mine was just diagnosed with pancreatic cancer. It just so happened that on Tuesday Mikki picked up a magazine at the oncologist with this article about a woman who took the antibiotic Rocephin and cured her cancer.
Pancreatic Cancer Survivor
May 7, 2018 11:00am
The only thing that was bothering me yesterday was my right wrist with a slight nerve pain. Hip, pelvis, leg, pubic bone, rest of arm...nothing. Laid off the morphine with my last dose at 11am yesterday to see what happens.
So today, really no change. Maybe the morphine was reducing the wrist pain a bit, but not that noticeable and totally wasn't masking any other pains. Stupid nephrostomy tube is more annoying than anything I have else going on. Since I can't seem to get any help taking care of it properly, I'll call the urologist and see if I can get a prescription for 6x8 suresite dressings and shower covers.
May 10, 2018 4:00 pm
Well, the scheduler at the urologist's office said they don't prescribe dressings, that I could come in and see a nurse to get the dressing changed. At a $40 copay each time. What BS, but made an appointment for tomorrow and will make them change the stabilization device too. One of those costs $26, so at least I'll get my money's worth. Hopefully the nurse can stop the connector from leaking. That's been another joy. Maybe I'll go in once a month and just change the dressing at home in between. CVS has large enough dressings for $4.50 each. It's just that the stabilization device starts to come up as the dressing sticks to it and during dressing changing starts to peel off with the dressing.
The morphine was stopping me up, so I quit it on Saturday. Had a pretty painful Sunday and Monday, so I started the gabapentin and tazanadine again. Didn't notice the effects other than the pain subsided, but I took a tazandine Wednesday morning at 7 and inside of a half hour I was incoherent. It took until 10 to straighten up so I could drive to work. Will have to just limit them to at night. Did so last night and slept straight through for the first time in weeks. At least have been able to work on the yard in the evening without too much trouble. But have this weird stabbing pain in the back of my right shoulder that appeared out of nowhere that's triggered by certain movements. Something to look forward to every time I sneeze. Took some Tylenol mid-day today to take the place of the tazanadine and it helped some with the pelvis and leg pain. Right thumb and that part of the palm on my right hand and wrist are numb. That is listed as a side affect of the NKTR-214, but not these other nerve pains.
Next: Round and round
Phew, been a hella couple of weeks. With the arm pain starting up the second week after the treatment, then followed by leg and hip pain. Ultimately found out that I have a hairline hip fracture that showed up in a CT. Likely due to the metastasis there. Scheduled the biopsy for the third week, but Dr. Kassahun wasn't available so Dr. Finklestein from his practice was scheduled. Also got to see Dr Kunal Parikh, a pain specialist who is a friend of my kids. He prescribed Gabapentin, Tizanadine and Morphine. Still haven't gotten the insurance approval for the morphine, but should be soon. Have had to take hydrocodone with the other two just to keep the pain at a tolerable level. Down to my last pill though. His pain chart makes so much more sense with the descriptive line under each emoji.
On April 18th at 11:30am I went in for the biopsy. I had to see Kris the PA at Dr Voglezang's office first thing that day to talk about the pain, so I just took the whole day off. Kind of a pointless appointment. Biopsy was uneventful. Dr.V's research staff came to pick up the sample, and as usual things were falling behind and they were stuck in the waiting room. So I told the nurse to let them back into the staging area. It was good they were there as they got to talk to Finkeslstein about what they needed and I think he adjusted his technique. He just took three tiny core samples about 1/4" deep and maybe 1 mm in width. The research staff came into the OR to be there when the samples came out. I had no bleeding in my urine afterwards like I did the first time, so this must have been less intrusive. He sent me home with a prescription for the antibiotic Bactrim which I started taking that night.
On April 19th, I woke up to go to work, but was feeling woozy and hot. Took some Tylenol and went to have breakfast. Took a bowl out of the cabinet and it fell right out of my hand. Cleaned that up and got another, took another bowl with two hands, and ate breakfast (cereal and milk). Decided to take my temperature and it was 101.5, so it was likely higher earlier. Decided to call in sick, but couldn't hold the phone, read the numbers, or dial. Kept dropping the phone. Speech was slurring too, so I had Mikki dial it, punch in the absence info, then text my boss. We called the cancer treatment center and they told us to check my BP. It was 70/45. So that explains the other symptoms. They had me come in and met me with a wheelchair. Took me straight to the cancer treatment area and hooked up saline to my port. Worked out well later as the port has gotten a lot of use that it wouldn't have it they hadn't tapped it. I kept passing out while they were pumping fluids into me. They got my BP up to 90/70, when Mikki called Lisa and told her what was going on.
Lisa said I likely had sepsis and drove over to take me to Summerlin Hospital. Checked in and they started an IV and ran a bunch of blood and urine tests to isolate the bug. Meanwhile they added some generic antibiotics to the drip. They found a room fairly quickly compared to other visits to the ER.
They ordered up Intervention Radiology to replace my nephrostomy tube on the 21st to eliminate that as a possible cause of the sepsis. That was a pretty quick procedure, but they forgot to close the valve on the bag and I got the bed soaked first time I went to get up. I was in the intermediate care unit, so the nurses are pretty top notch and were really attentive. Plus they aren't assigned many patients (sometimes 2), so they have the proper time to spend with the patients. Had a whole parade of docs come through - infectious disease - Dr. Alexis, kidney disease - Dr. Ryu, hospitalist - Dr. Meady.
They also found that sometimes when I was sleeping, my oxygen levels dropped to as low as 78%, so I slept with a nasal cannula with 2L of oxygen flowing. Have to see my primary care physician about a sleep study now. Ugh.
Ended up staying there through the 23rd when they finally isolated the bug on Sunday, stopped the other antibiotics and started the antibiotic Cefepime. They ordered up a case of it, along with Heparin and saline plungers for me to take at home and push through the port myself. I went to Southwest Medical on Tuesday morning to pick up the meds and get trained on the administration - take off the port cap, clean the port tap with alcohol wipe, saline, then Cefepime, then Heparin, then saline, then recap the port tap with a new cap, dispose of the plungers in a sharps container. 8 day supply, twice a day.
On Tuesday, the urine in the nephrostomy bag started getting bloody and the junction in the line started leaking when I was lying down. Made an appointment to see Kassahun, but soonest I could get an appointment was the 2nd. That's the last day on the Cefepime, so if he orders another antibiotic, at least I'll be done with one.
Dr. V's office is trying to find out the impact all this will have on my participation in the clinical trial. They may just want to wait a few days after the antibiotics get out of my system to restart the next treatment that was supposed to happen on the 23rd. I have an appointment to see him tomorrow as he is leaving town for two weeks, and just wanted to review my condition.
May 4, 2018 2:00pm
Meeting with Dr V on 4/27 went well. Funny part was when I told him that one of the docs in the hospital said my pubic bone had a hairline fracture. He responded with, "That's a good thing." I probably said something like, "How is that good news?" He said that it means that the immunotherapy has killed off the cancer in that bone and left a cavity. That didn't leave much bone behind to hold things together, so it cracked. We were both surprised at the size of the cavity - over 4cm, given that a pubic bone isn't all that big. He said I was cleared for the rest of the trial, that they didn't care about the antibiotics I was on.
So on Tuesday, I stopped at Southwest Medical for blood tests related to the effectiveness of the antibiotics. I still had one more dose of the Cefepime to give myself, so they left the PowerPort line in. I then went to my primary care physician to see about getting a referral for a sleep study, due to the oxygen levels seen in the hospital. Then finally went to CCCN for the treatment. Dr V was on vacation for 2 or 3 weeks and his PA got sick, so another doctor has been scrambling to backfill. He barely came in long enough to sign the forms to admit me for the treatment. The pain in my arms was still pretty bad as well as in my pelvis, pubic bone and down my legs. For some reason by Wednesday, a lot of the pain was gone and by today, mostly just numbness in my hands and some sensitivity in my right arm. Temperature has been all over the map. Within two hours it can go from 96 to 102 and back. Pretty much slept as soon as I got home last night and still didn't feel rested this morning. Feeling better than most days today. Not going to hazard a guess what the next few days will bring.
A friend of mine was just diagnosed with pancreatic cancer. It just so happened that on Tuesday Mikki picked up a magazine at the oncologist with this article about a woman who took the antibiotic Rocephin and cured her cancer.
Pancreatic Cancer Survivor
May 7, 2018 11:00am
The only thing that was bothering me yesterday was my right wrist with a slight nerve pain. Hip, pelvis, leg, pubic bone, rest of arm...nothing. Laid off the morphine with my last dose at 11am yesterday to see what happens.
So today, really no change. Maybe the morphine was reducing the wrist pain a bit, but not that noticeable and totally wasn't masking any other pains. Stupid nephrostomy tube is more annoying than anything I have else going on. Since I can't seem to get any help taking care of it properly, I'll call the urologist and see if I can get a prescription for 6x8 suresite dressings and shower covers.
May 10, 2018 4:00 pm
Well, the scheduler at the urologist's office said they don't prescribe dressings, that I could come in and see a nurse to get the dressing changed. At a $40 copay each time. What BS, but made an appointment for tomorrow and will make them change the stabilization device too. One of those costs $26, so at least I'll get my money's worth. Hopefully the nurse can stop the connector from leaking. That's been another joy. Maybe I'll go in once a month and just change the dressing at home in between. CVS has large enough dressings for $4.50 each. It's just that the stabilization device starts to come up as the dressing sticks to it and during dressing changing starts to peel off with the dressing.
The morphine was stopping me up, so I quit it on Saturday. Had a pretty painful Sunday and Monday, so I started the gabapentin and tazanadine again. Didn't notice the effects other than the pain subsided, but I took a tazandine Wednesday morning at 7 and inside of a half hour I was incoherent. It took until 10 to straighten up so I could drive to work. Will have to just limit them to at night. Did so last night and slept straight through for the first time in weeks. At least have been able to work on the yard in the evening without too much trouble. But have this weird stabbing pain in the back of my right shoulder that appeared out of nowhere that's triggered by certain movements. Something to look forward to every time I sneeze. Took some Tylenol mid-day today to take the place of the tazanadine and it helped some with the pelvis and leg pain. Right thumb and that part of the palm on my right hand and wrist are numb. That is listed as a side affect of the NKTR-214, but not these other nerve pains.
Next: Round and round
