The prior post can be found HERE.
When I last left off, I still had congestion in my lungs. I was getting better, but it was a slow recovery.
PADCEV - Cycle 1, February
The following week I started on the new drug PADCEV. The Padcev website states it is not chemotherapy, but my oncologist calls it chemotherapy. I've seen other webpages that call it an immunotherapy drug. This drug was approved for my type of cancer in December 2019, so not that long ago. Padcev is given via infusion once a week for three weeks then one week off. One month of treatment costs just under $40,000. Fortunately, this drug is covered by my insurance. All I had to pay was my annual co-pay in full and the insurance picked up the rest. There are big side effects with this drug. You can go into hyperglycemia, lose your hair, get skin rashes, anemia (I already have that) and your vitals have to be monitored. In the original studies, I believe at least one patient lost their life because their skin literally fell apart. The first month/cycle went well. My side effects were more neuropathy in my feet and occasional itching on my skin. As always, they monitored my vitals. My liver stats peaked real high but then came back down.
Cycle 2, March
The second month, Cycle 2, started March 10, my hair started to fall out big time. It would came out like a bucket load when I put a brush through my hair. Hair was falling when I was cooking and everywhere else. I finally had my friend Tara cut my hair short, just touching my shoulders. It kept falling out. What I have left today is very fine baby hair that is barely covering my scalp. It's sad for me because I've had long hair my entire life. Better to have no hair and still standing on two feet than anything else.
My lungs were getting better and I took on the task of trying to get that biopsy scheduled at the "in network" hospital. Getting the right lab tests they wanted and a copy of my last scan (11/29/22) to the hospital's radiology department was exasperating but I did accomplish it. The scan gets scheduled for 8 am March 15th. For pre-op, I have to be at the hospital at 6:30 am. I get an Uber reserved to pick me up at 5:45am to take me to the hospital. A friend will pick me up and take me home. It's all set. Tuesday, March 14, a woman from the radiology department called to tell me that my biopsy is cancelled. The radiologist assigned to the case looked and my films and was not willing to do the procedure. The woman told me his exact words were, "It's too risky." I was totally defeated. The radiologists at USC felt they could do the biposy, they got approval for it. But this radiologist -where my insurance said I had to have it performed, "in network" said it was too risky for him. I didn't know what to do. I was at a loss.
March 29, I received a message from one of the doctors that works with my urologist surgeon. They were asking what happened with the biopsy. I called back and left a message for them. I told them the name of the radiologist at the in network hospital, the contact phone number and that the radiologist was unwilling to do the biopsy, and they said it was too risky. I did not hear back after that.
Other than the hair loss, occasional itching, anemia and neuropathy, my vitals were good through the second cycle. After two cycles of Padcev, I had a scan on March 30. The results were not available until my next oncology appointment, April 7.
Cycle 3, April
Sunday April 2nd, early morning around 6:30am, I noticed a tiny amount of blood on my self-catheter. As the day wore on, I started to see more blood in my urine. It wasn't until after I had taken my evening Lovenox injection that I realized the bleeding was probably due to the blood thinner. I knew that nosebleeds could be a possible side effects of Lovenox but I didn't have all of them memorized. After reading through the side effects it did state that bleeding from the colon or bladder was possible. I did not feel any different. I did not feel weaker, or have any pain with the bleeding.
Monday morning I called the oncology office about the bleeding. They told me to stop the Lovenox immediately and try to get an appointment with the urologist-surgeon as soon as possible. Monday, the bleeding continued even more so than Sunday. Monday evening around 6pm would have been my next injection, but I did not take it. Early Tuesday morning, (2:30am) I could tell the bleeding was significantly reduced. it continued to improve throughout the day By 2:30pm there was no visible blood in my urine.
When I saw my oncologist on Friday, April 7 to start Cycle 3, she indicated my labs were pretty good. My creatinine (kidney function) was the lowest it had ever been since chemo at 1.11. I updated her on my struggles trying to call USC urology on Monday and Wednesday. The urologist-surgeon and most of his staff were out of Los Angeles all that week. They also said they couldn't even book an appointment until they obtained information from the team that the appointment had been approved by my insurance. My oncologist suggested I reach out to my prior urologist (in network) to see if he could possibly fit me in to do a cystoscopy. Several phone calls and days later, my old urologist's office was able to squeeze me in for an update appointment on April 24. That's the earliest I could get in to see him. The cystoscopy would have to come later, after I had an update appointment with him to tell him what had been going on over the past 14 months since I had seen him.
The news from the scan was good. The three target (measurable) lymph nodes appeared to have shrunk a bit. One appeared to have increased slightly. My oncologist said that "could be" attributed to how the CT scan sliced the image. Here are the new sizes and prior for the three lymph nodes.
Measurable Disease
1. Left supraclavicular adenopathy: 1.4 x 1.4 cm, PRIOR: 1.5 x 1.3 cm
2. Left para-aortic retroperitoneal adenopathy: 1.5 x 1.0 cm, PRIOR: 2.0 x 1.6 cm
3. Right external iliac adenopathy: 3.1 x 2.1 cm, PRIOR: 2.7 x 2.1 cm
Non-measurable Disease
1. Extensive scattered retroperitoneal adenopathy, slightly smaller and improved in the interim.
2. Mild multifocal bilateral iliac chain adenopathy, also smaller and improved in the interim.
New Disease:
None
No new disease was fantastic news. I'm still holding the disease from spreading to other organs. Metastatic bladder cancer can, at any time, break out and spread to other organs very fast.
In the measurable disease, the #2 lymph node is the one very close to my descending aorta. This one has shrunk the most. #3 is the lymph node they went after with my first biopsy in January 2021.
My oncologist said the increase in lymph node #3 "could be" due to how the CT scan sliced the image. I won't know for certain on that until I get to meet with the urologist surgeon one last time. He knows how to read CT scans and could tell me if that was true or not. With this news, I may still be a candidate down the road for bladder removal surgery and neo-bladder reconstruction. That's my hope. For that to happen, the cancer in my lymph nodes has to shrink to disappear. Then I'm a candidate for surgery.
There was lots of inflammation in my lungs. They found inflammation throughout my lungs that the radiologist thought was the "beginning" of pneumonia. Actually, what he was seeing is the remnants of my bad case of pneumonia.
The blood clot in my inferior vena cava. The radiologist report said: "Large IVC thrombosis, stable." My oncologist said that as this clot material forms, from cancer being a coagulating disease, there is actually only so much that the body can breakdown and reabsorb with a clot. She said the reason the thrombosis is stable is because my cancer disease has improved/receded. The fact that it was stable is good news but it means that I still have to be on a maintenance dose of a blood thinner. So I'm back on the Eliquis 2.5 mg twice a day.
Friday April 14, I had my second dose in Cycle 3. I did not see my oncologist that day and went straight to the infusion room. When I got home I opened up my mailbox to a notice from my insurance company. They had approved for me to get my biopsy at USC! I was over the moon! My urologist surgeon at USC Keck Medicine had resubmitted the request to get the biopsy performed at USC.
On Monday, April 17, I called USC Radiology to schedule. They found the insurance approval in their records but said they did not have the direct order from the ordering doctor yet. They could not schedule it. The very next day, I got a call from a nurse from Raidology telling me my biopsy was scheduled for 8 am May 1st. Radiology scheduling had not called me to tell me that. She was only calling to ask about the blood thinner and that I needed to stop it 48 hours before the procedure. I gave her my oncologist's office number so that they could get the approval from her that this would be okay for me.
The following day, Wednesday, I get an email notice from Keck Medicine that a Biopsy had been scheduled for APRIL 26, at 1pm and the one for May 1 was also in my chart. I called Radiology. They said that they scheduled the May appointment in error at Keck Hospital. Insurance approved the procedure at the Kenneth Norris Cancer Hospital, that had an earlier day/time. Norris is practically next door. They're both in the same USC complex. So now I have to arrange rides on a different day and time.
Wednesday is my day to get my every 2 weeks blood draw for monitoring my Padcev treatment. I was on my way to the appointment when a doctor that works with my urologist-surgeon called, telling me I needed labs. I told him the Labcorp location I was going to in about ten minutes. Through the electronic portals, he sent two more tests I needed before I could get the biopsy. When I got to the lab, I told the staff to also send my regular CBC and chem panel my oncologist ordered to the USC doctor who added the two other tests. So that was quick and painless. Radiology would get a copy of all my tests directly from the Lab and I wouldn't have to send anyone a copy.
Friday April 21, I had my third Padcev dose in Cycle 3. Before the infusion, my oncologist asked how I was feeling and went over my labs with me. I told her I feel that my neuropathy in my feet is a bit worse, my hair continues to fall out and I feel tired all the time. But my labs look good. My creatinine came up a bit from 1.11 to 1.31. This is something my kidneys have done for a long time now. It bounces back and forth from 1.1 or 1.2 up to 1.3 or 1.4 then comes back down again. It hasn't been in the normal range (1.0 or less) ever since I had chemo. RBC's and WBC's look good and platelets are really good. My Hemoglobin came up to 11.2, which is real good and my liver enzymes are back in the normal range. I'm to stop the Eliquis on Monday morning and start it up again on Thursday morning, the day after the biopsy.
Here I am at my last infusion appointment on April 21. So far, one day, one week at a time, I'm doing okay.
The next post can be found HERE.
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