Fourth and final...maybe Updated 20118 4:30pm
January 26, 2018 8:00 pm Back to In the Beginning
Finished last round lof chemo uneventfully. Glad to be out of that chemo lab. Most of the patients look awful. Oncologist is going to ask insurance for another Pet Scan in two weeks, plus start 2 to 3 weeks of daily radiation. Hopefully since we switched health plans they won't impose the 3 month gap requirement for the Pet Scan. The oncologist said he might do two more rounds of chemo based on the Pet Scan. If insurance doesn't cover it, we might have to find a way to pay for it out of pocket and take the lesser reimbursement if any. He has cut down the dosage of the Doxorubicin from 40ml down to 20ml quite a bit to avoid the infection risk and drop in white blood cells. He didn't like doing it, but realized spending time in the hospital wasn't great either. He was encouraged that the pain was gone. He said the bone disease was on the right pubic bone. He thought that either the bladder tumor or that bone could have been the cause of the pain. He may give some more treatment for the bone in the meantime too. He is going to consider putting me on immunotherapy when he sees me in three weeks vs the other two chemo treatments. I asked about proton therapy and he said it wasn't as effective as radiation therapy, as well targeted and more expensive. I can do the radiation therapy in his office which is close to work. He said my calcium levels were a bit low and the medicine for the bone hardening had an impact on that, so he wanted to defer administering that until the levels came up.
He also wants me to get the genealogy counseling going and see the urologist about testing the right kidney and ureter to see if the tumor has shrunk enough to allow drainage. They could squirt dye up the tube to do that and I would see it reflected in the urine. If so, I could get this stupid drain taken out. So annoying as the hole is always irritated and at risk of infection. He really expected that the radiologist should have set me up for a followup. He said I should pick my parents better next time based on the cancer history in the family.
Last week, the wig Mikki ordered from wigsis.com showed up. I got home first and tried it on and texted her that it looked idiotic. When she came home she said we could take it to her stylist who could cut it to make it look right. I thought it was a lost cause. She finally came to the realization after a couple days that it would never look right and besides, my hair isn't falling out that quickly. So we are sending it back.
January 31, 2018 9:00 pm
I met with Anna Victorine at Provenance Healthcare about the genetic testing. She was pretty surprised at the details I was able to capture regarding the family history. Big thanks to all the cousins who helped with that. Basically heredity has about a 10% impact on cancers overall, followed by familial coincidences (which may be environmental or just an unknown genetic link) and the vast majority are sporadic in nature. She said 1 in 3 men and 1 in 2 women will get cancer at some point. There doesn't seem to be a lot of markers for bladder cancer, so we will probably be looking for other markers for other types. The prevalence of prostate cancer appearing later in life in a number of my relatives is indicative of a risk that could be hereditary. There's also a lot of breast plus some ovarian and uterine cancers that could impact my daughter and even my son. Men have something like a 3% chance of breast cancer when they have the BRCA2 mutation. The lab they use, Myriad Genetics, invented the testing protocols, so they are top notch. Anna didn't have much confidence in Quest Diagnotics' testing.
Tomorrow I meet with the urologist, Dr. Kassahun to see if he can test the right kidney drainage through the ureter.
February 1, 2018 4:30pm
Went to see Kassahun the urologist. He can't help with the testing of the ureter; that's the intervention radiologist's job. So wasted office visit just to get a referral to the right guy. He reiterated the need to remove the kidney. Plus he mentioned a stoma in passing. If he can't do a neobladder, he's not doing any surgery. Sure as shit I'm not walking around with a fucking bag for the rest of my life.
Next: Fingers crossed... Updated 020618 1000pm
Finished last round lof chemo uneventfully. Glad to be out of that chemo lab. Most of the patients look awful. Oncologist is going to ask insurance for another Pet Scan in two weeks, plus start 2 to 3 weeks of daily radiation. Hopefully since we switched health plans they won't impose the 3 month gap requirement for the Pet Scan. The oncologist said he might do two more rounds of chemo based on the Pet Scan. If insurance doesn't cover it, we might have to find a way to pay for it out of pocket and take the lesser reimbursement if any. He has cut down the dosage of the Doxorubicin from 40ml down to 20ml quite a bit to avoid the infection risk and drop in white blood cells. He didn't like doing it, but realized spending time in the hospital wasn't great either. He was encouraged that the pain was gone. He said the bone disease was on the right pubic bone. He thought that either the bladder tumor or that bone could have been the cause of the pain. He may give some more treatment for the bone in the meantime too. He is going to consider putting me on immunotherapy when he sees me in three weeks vs the other two chemo treatments. I asked about proton therapy and he said it wasn't as effective as radiation therapy, as well targeted and more expensive. I can do the radiation therapy in his office which is close to work. He said my calcium levels were a bit low and the medicine for the bone hardening had an impact on that, so he wanted to defer administering that until the levels came up.
He also wants me to get the genealogy counseling going and see the urologist about testing the right kidney and ureter to see if the tumor has shrunk enough to allow drainage. They could squirt dye up the tube to do that and I would see it reflected in the urine. If so, I could get this stupid drain taken out. So annoying as the hole is always irritated and at risk of infection. He really expected that the radiologist should have set me up for a followup. He said I should pick my parents better next time based on the cancer history in the family.
Last week, the wig Mikki ordered from wigsis.com showed up. I got home first and tried it on and texted her that it looked idiotic. When she came home she said we could take it to her stylist who could cut it to make it look right. I thought it was a lost cause. She finally came to the realization after a couple days that it would never look right and besides, my hair isn't falling out that quickly. So we are sending it back.
I also spoke to Cancer Treatment Centers of America to see about a second opinion. They are supposed to check with our insurance to see what they cover, which I'm guessing is going to be squat since they are out of network and out of state. The rep is going to get back to us Monday and want to do the review before I start radiation, because they know that their treatment options are limited after that and I really think this is a waste of time. It would take 3 days in Phoenix to perform the review.
So many options to consider. That Issels institute in Santa Barbara had some off reviews that concerned us. It really seems like my oncologist is following the best approach, so looking for other options may be a waste of time.
January 30, 2018 9:00 am
I was able to get an appointment for tomorrow with Provenance Healthcare, the genetic counseling facility. Should be interesting. Can't wait to see the results. I also am seeing my urologist on Thursday to see about getting the ureter flow tested. I've been talking to Cancer Treatment Centers of America in Phoenix about getting second opinions. It might be overkill and I'm not unhappy with the doctors I have and my treatment plan. We'll see if it's worth it when they give me an estimate later. I also got FMLA paperwork going just in case I have some extended time off that I need to take. So far work has been great and I've just taken a few vacation days for my chemo appointments and just duck out for routine office visits and lab tests. If ultimately I have the kidney and/or bladder removed or otherwise surgically impacted, I could be out for 6 weeks.
January 31, 2018 9:00 pm
I met with Anna Victorine at Provenance Healthcare about the genetic testing. She was pretty surprised at the details I was able to capture regarding the family history. Big thanks to all the cousins who helped with that. Basically heredity has about a 10% impact on cancers overall, followed by familial coincidences (which may be environmental or just an unknown genetic link) and the vast majority are sporadic in nature. She said 1 in 3 men and 1 in 2 women will get cancer at some point. There doesn't seem to be a lot of markers for bladder cancer, so we will probably be looking for other markers for other types. The prevalence of prostate cancer appearing later in life in a number of my relatives is indicative of a risk that could be hereditary. There's also a lot of breast plus some ovarian and uterine cancers that could impact my daughter and even my son. Men have something like a 3% chance of breast cancer when they have the BRCA2 mutation. The lab they use, Myriad Genetics, invented the testing protocols, so they are top notch. Anna didn't have much confidence in Quest Diagnotics' testing.
Tomorrow I meet with the urologist, Dr. Kassahun to see if he can test the right kidney drainage through the ureter.
February 1, 2018 4:30pm
Went to see Kassahun the urologist. He can't help with the testing of the ureter; that's the intervention radiologist's job. So wasted office visit just to get a referral to the right guy. He reiterated the need to remove the kidney. Plus he mentioned a stoma in passing. If he can't do a neobladder, he's not doing any surgery. Sure as shit I'm not walking around with a fucking bag for the rest of my life.
Next: Fingers crossed... Updated 020618 1000pm
