The prior post can be found HERE.
Hello friends. Lots to update you on. When I last left off, I was going to see my old urologist on April 24, for an update with him about scheduling a cystoscopy and my second biopsy was scheduled with USC for April 26 at 1pm.
Biopsy & Cystoscopy
Surprise surprise, on April 24, my old urologist performed a cystoscopy. With his scheduler, they told me I needed an update consult first, before I could get the cystoscopy. When I arrived, I did not realize they were going to perform a cystoscopy that day. But that was great. He went in, looked around. He told me that my bladder looks about the same as when he first saw me back in August 2020. He said he did see some low grade, "red velvet" looking material that is cancer. This is not "high grade" metastatic cancer. This was different than what he found back in December 2021 and performed a cauterization in the hospital in January 2022. He said he could do the same thing again for this material. He also did a bladder wash. The results of the bladder wash did not show evidence of high-grade, metastatic cancer. As I write this, I still don't know if my older urologist will be scheduling a procedure to cauterize this tissue.
April 26, 2023
At 10am I took an Uber to the USC campus near downtown Los Angeles where the Kenneth Norris Cancer Hospital is located. My driver took the 118 to the 5. The LA County coroner's facility is right next door. How convenient. I'm reminded of all the testimony I've listened to over the years from criminalists employed by the coroner's office, as well as deputy coroners as well. The ride was just over 50 minutes. I arrived on time.
This was a nice, small hospital with great staff. After I was checked in and admitted, at 11:10am, a volunteer escorted me to the second floor radiology department. I waited for an RN to come get me.
At 11:40 am, the RN called me back to ask a few questions. Last
time I had solid food, last time I had something to drink, last
restroom, etc. I let her know that as it got closer, I would need to
self-cath. She asked if there were any pacemakers, medicine patches,
allergies to anything, etc. Unfortunately, they don't have a bed for me
yet so now I'm back in the waiting room area.
By 12:30pm I'm in my gown and the IV is in my arm. I'm all ready for the land of nod. I was under the impression that this was going to be a difficult procedure. The lymph node they were going to go after was very deep in my body and somewhat close to my descending aorta. The radiologist came by and I learn I'm getting twilight, not anesthesia. I also learned that my urologist-surgeon, after seeing my latest scans, decided to change course and instructed the radiologist to go after the largest lymph node in far right pelvis that is not retroperitoneal. This is the same lymph node that was tested in January 2021 when my Stage IV cancer was identified.
It's now 2:30pm and I'm in recovery. I was never
completely out. I snacked on cranberry juice, grapes and pineapple. I
passed on a sandwich, since I don't eat bread. My current special diet is grain-free. I don't eat grain of any kind. During the procedure, I could hear and see what
was going on. I could hear the snips of the device. I didn't feel
anything. Radiologist was fantastic. Explained everything. They hold onto you for several hours after the procedure. They said I could be released around 4:30 pm.
My girlfriend was not able to pick me up until much later in the evening so several days before, kinda last minute, I asked my neighbor -who runs a limo service- if he could do me a big favor. I asked if he or one of his drivers could pick me up from the hospital. He said one of his drivers would pick me up from the hospital and there would be no charge. My limo picked me up, right on time and I was still feeling good.
After 6pm, I was home and having dinner and still feeling good. It was an easy, fast procedure. When the radiologist first talked to me before the procedure, he explained everything. He was kind, patient and friendly. One of the things he said they do, is after they've collected samples, the device will still be in my body for a time. Before they take the device out, they have a pathologist look at the tissue they collected so far under a scope to determine if they collected enough "cells" for the biopsy. If not, he would take more samples.
So during the biopsy, that happened. A pathologist looked at the material then the radiologist took the device out of my body. He then told me something interesting. He said they got enough material/cells with the three collections. But when the pathologist looked at the material, they said it didn't respond like tumor material. That the samples were like "rubbery". I think he said, "... like fibrous". I can't remember if the radiologist said it or if I asked the word fibrous. I'm thinking he said fibrous, but I did remember hearing that word.
From the radiologist's tone and demeanor, he stressed that this was PRELIMINARY. It was NOT PATHOLOGY TESTING. However, it sounded like this could be a very good thing and an explanation as to why this lymph node is not shrinking. The next thing would be waiting to hear from the urologist-sugreonwait to hear the results of the biopsy.
May 23, 2023
It took way longer than I expected to get the results of the biopsy. I did not hear from the urologist-surgeon or any of his assistants from USC for almost two weeks. I finally called and asked for an appointment. The first available appointment was a teleconference with the urologist-surgeon two weeks later.
I find out from the urologist-surgeon that the biopsy confirmed the preliminary tissue review. The biopsy did not show any evidence of metastatic disease. The tissue was, like the radiologist said during the procedure it was mostly "fibrous tissue". The report also indicated there was very little lymphatic material in the sample. The urologist-surgeon admitted he was surprised by the result, but even so, it was good news. That combined with the good scan from March 30th, the urologist-surgeon said he was "very pleased" with the news. The urologist-surgeon also said this means I am back being potentially eligible for the bladder surgery. The urologist-surgeon also said that we needed new scans. I told the urologist-surgeon that my next scan would be 2.5 months from the last scan. It's scheduled for June 14.
Although this result is surprising news, we won't know until the next scan what is the state of the other two "target" lymph nodes are. The one nearest the aorta did shrink noticeably, but the other one near it did not shrink at all. The non measurable lymph nodes scattered throughout my pelvis and right iliac space did show evidence of shrinking compared to the prior scan.
June 2, 2023
I started Cycle 5, Dose #1 on Padcev. Before the infusion, I went over with my oncologist my latest lab results from May 31st. All my labs look real good. My RBC's (Red Blood Cells) and Hemoglobin keep going up. They are in good ranges now. My Liver stats, Iron studies are all good. There are only two stats that are out of range, my Creatinine (which tells how well my kidneys are filtering my blood) and the RDW, (Red Cell Distribution Width) which is commonly used to help diagnose anemia. The other item of note is the visual appearance of my RBC's. The visual examination of my red blood cells showed Ovalocytes and Anisocytes were present. Some of my red blood cells are different sizes and some are egg shaped. There are several different causes, but for me it's because I'm on a powerful, toxic drug. My hair continues to fall out. It's not enough to cover my scalp now. My eyelashes are gone and I have a few scattered eyebrow hairs left.
With the Padcev, I don't technically have anemia, but I feel like I have anemia. I feel weak. I feel like I don't have any energy. I used to be able to spend four hours gardening but I can barely do two hours. And I don't have a lot of motivation to keep my body moving. I really have to push myself to get projects done. My neuropathy in my feet has gotten worse, but as of June 2, I told my oncologist I noticed a difference in how my hands felt and that it probably is the beginnings of neuropathy. When I spoke to the urologist-surgeon a week prior, he made a point to ask me if I had neuropathy in my hands.
While going over my labs, my oncologist asked if I used their patient portal. My oncologist indicated that when my labs come in, they are uploaded to my patient account. I replied that I rarely used the portal because of all my doctor's patient-portal accounts, (oncology, family physician, USC Keck Medicine), the oncology portal is the only one that does not allow the patient to upload documents.
My infusion went well. The nurses at this onology group are some of the best I've ever encountered. They are excellent at installing an IV with the least amount of discomfort. When I got home, I decided to go to the patient portal and read through everything that might be in my file. There were a few minor things that were inaccurate -that I was a social drinker- when I haven't had any alcohol in over 15 years or more. There was something that piqued my interest and sent me on a search for discovery that told me something that I never knew.
Under diagnosis, it stated "Bladder Cancer (Genitourinary) - Pathologic Stage IVA.
A note here. When I was with my first oncologist, she never told me to my face that I was Stage IVA. I found out that I was Stage IV and "terminal" when I read what she wrote in documents to my employer on documents that were trying to save my benefits for six months while I went on disability. She never talked to me about it with me. She never told me there was anything beyond Stage IV.
Stage IVA.
In all my research over two years ago, in trying to understand my Stage IV cancer, (found in my lymph nodes with no originating tumor ever identified), my big concern was, what were my odds of survival at five years. I had never read anything about Stage IV "A". I never found or read that there were three stages of Stage IV in bladder cancer: A, B and C. All I ever read back then was Stage IV bladder cancer had a 5% survival rate at five years. But now, after reading and researching Stage IVA, I find some remarkable news. Stage IVB and IVC are bladder cancers that have spread outside the bladder to tissues beyond the pelvis and/or abdomen. Those cancers have a survival rate now of 8% at five years. But Stage IVA describes cancer that has spread to other tissues, like lymph nodes, in the pelvis and abdomen. That describes my cancer. So far, my cancer has stayed right where it was found. Over the past two years, it has not spread beyond that location. And the good news, depending on which web site you read, Stage IVA bladder cancer has a five year survival rate of 36-39%.
All this time, I always though I was looking down a railroad tunnel of a difficult to obtain goal. My odds of getting to five years, still less that 50-50 odds but much better than what I though I had.
Today
Within days of the urologist-surgeon asking about neuropathy in my hands I started to feel something different in my hands. I knew it was the beginning of neuropathy. So far, it's just been a feeling of tightness that has gotten more noticeable over the last week. I started using my wax machine to heat up my hands. It doesn't cure it, just makes my hands feel better for a while. This morning, the tightness is more prominent. It has not limited being able to take care of myself. I can shower, dress, wash dishes, etc., but my hands don't feel right. They don't feel good. I do know from reading all the side effects of Padcev on the Padcev website, that some patients had to stop the medication for a time or go on a reduced dose. I'll be discussing possibility of either going on a weaker dose or stopping for a cycle or two to see if my hands improve. I don't want to be left with something permanent, like my feet.
Tomorrow I get my next labs, Wednesday I get my scan and Friday is Cycle 5, Dose #3. I'll go through with this dose and hope that I get the results of my next scan in about a week when decisions can be made.
Me, Cycle 5, Dose #2, June 9, 2023.
More to come...
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