Chemo - Round 2, Cycle 2

Before I get to the details, the main news is my PSA went down to 7! Holy crap, I did not expect that...it was 55 when we last checked it.

So today I had treatment later in the day than I usually do. I almost always do a Monday morning, but due to scheduling, I had to have treatment in the afternoon today. Labs at 3:00, meet with oncologist at 3:40, chemo at 4:30. Things were running a bit late as we had a blizzard the day before, and the weather and roads were still bad. No complaints from me, though. Just bring me that warm blanket. Oddly enough, I still enjoy going to the cancer center. Well, I guess enjoy may not be the best word, but I do like the attention and care. Even better when results are good.

One thing - the Benadryl in the pre-chemo drip...wow. I joked with the nurse in the chemo room about how sleepy the Benadryl had made me last time. So she let me know when the Benadryl was going in. A few minutes later I thought, this isn't so bad. And then a few minutes after that it hit me. I nodded in and out for a while, and then finally fell asleep before she even switched me over to the chemo. I got a nice hour and half nap.

One down side to the afternoon treatment - no sack lunch! But they did have peanut butter crackers and cranberry juice. I ate the crackers pronto, I was starving, but I fell asleep before getting to the juice, though. Speaking of eating, I think all the Thanksgiving pumpkin and apple (most pumpkin) pies must have fattened me up a bit. I was down to 157 lbs last time I was in, and today I was back up to 163.

I ended the day leaving the cancer center completely incoherent. Good thing I had my wife pick me up. When I got home around 7:30 p.m. I had a quick dinner and went straight to bed. Out go the lights, zzzzz.

Chemo - Round 2, Cycle 1, Week 1

It's been nine months since the last cycle of my first round of chemo. Ringing the bell back in February seems so long ago. And just as it was a year ago, the first week of chemo really wasn't too bad. Just like clockwork, it's chemo on Monday and shooting pains in my legs, ankles, and hands on Thursday. The pain is a little more intense than it was a year ago. By Saturday the pain began to subside. I experienced a little of the metal mouth today. If it's like the first time, hat usually gets worse the farther along I get in treatment.

Chemo - Round 2, Cycle 1

Well here we go. I get to go through chemo again. Like last year (round 1 - docetaxel), I go in every three weeks for an IV infusion for six cycles total. I've already grown used to the familiar bump in my upper right chest like a port was just a natural part of my body that I was born with.

An interesting coincidence, the dates of my second round of chemos are exactly one year to the week day from last year. I tend to like things to go the same way, so I guess someone was looking after me in the scheduling department. If I can get any comfort out of all this, I reckon this is it.

First up is the nurse lab visit. Today that's at 9:00 a.m., so I need to be there by 8:45. Generally this is pretty quick and simple. Check at the front desk, repeat my name and birth date a few times, get the patient wrist band, and then I'm handed a pager and head to the waiting area. After a short wait, the pager goes off and I head over to they do the blood draws. This is the first time we get to use the new port, and it's good to go. First the nurse draws blood through my port, and then sets me up with the tubing for chemo. The jab of the needle is almost nothing. You get used to needles pretty quickly. I wish I could say it's a bonus. Actually, I guess it is.

The lady at the front desk is the same lady who was at the front desk when I started my first chemo last year. I still don't know her name, but she reminds me a lot of the actress Mary Steenburgen. In another interesting twist of fate, she started working in another area for a while and this is the first time I've seen her at the front desk since she had moved elsewhere. Oh.And that other area was my oncologist's office, so I still got to see her when I was coming in every six weeks for a checkup. But still, first day of chemo and there she was at the front desk, just like she was when I started this whole thing. So far I kind of feel I'm being dropped back a year ago, but with the knowledge of a year of treatment.

After the lab I head downstairs to my oncologist's office. The appointment is scheduled for 9:40 a.m., arrive by 9:25. The wait is normally pretty short. Again, I check in at the desk, repeat my name and birth date again, and then head back to the office. I guess not everything was going to line up. The same girl has taken me back to my onncologist's office since I started. Today it's somebody different. But he's just a nice as everyone else in this place, so the small change doesn't throw me off. Fist we check my weight on the scale outside the office. This time I weigh 157 pounds, so I'm down five from last time. Not a big worry, though, I'm still well within normal BMI range, and truthfully, I prefer to be around 155. Then we head into the office to check my vitals. I tend to get really anxious when I visit a doctor, though really I'm so used to the cancer center, and everyone here is so nice, I'm not sure if I really get the same anxiety. Blood pressure a little on the high side, as is my heart rate, but it's never been enough to worry about.After that I'm left in the room alone to wait for the oncologist.

Quick side note - my oncologist is amazing. Every quality you'd want in an oncologist, she has it. I sometimes think she's my guardian angel. I hear so many horror stories from other cancer patients about their doctors, their treatments, their medications, I can't believe what I'm hearing because it sounds nothing like what I've experienced. It's not just my oncologist, either. The entire staff at the cancer center are incredible.

While I'm waiting for my oncologist to come in, I get a notification on my phone that I have a new test result in MyChart. I look and my PSA has gone up again. This time it's up to 54.76, up nearly 20 points from the last time, so the decision to go on the trial and do chemo again was a good one.

My oncologist will let me ask as many questions I want, and is never in a hurry to leave. She's very attentive and knows my case well. She allows me to work with her when it comes to decisions. I do a lot of research (I'm her "enlightened patient.") and that makes it easier to discuss options with her. I get the feeling that most patients just want to come in and get the magic pill. I've become nearly (but not quite) obsessive about cancer. A good part of my reading is cancer related and I listen to several cancer related podcasts. I don't let cancer define my, but it is part of my identify. Working together with my oncologist gives me some feeling of control over my treatment, and she gives me every opportunity to do so. That's a really good thing mentally.

After brief discussion about the PSA results, which was really no more than confirming that the trial was the right decision, I get the green light for chemo. My white blood cell count generally does't get very low, so I've never had to miss a chemo due to white blood cell count being too low. I  love talking with my oncologist, but I don't really have many questions, so we keep it pretty short. The clinical trial coordinator is there as well, and she gives me so forms so I can track when I take my medications each day, specifically what I'm taking for the trial, which is prednisone and abiraterone. (Zytiga) She wants me to start today, same day I start chemo.

Next is the actual treatment. We go up to the third floor where the chemo rooms are. Once again I check in at the desk and repeat my name and birth date. (You get used to it.) This time I get a bed as whoever was scheduled for that room wanted a chair instead. I have no preference, actually, so bed it is. Now one thing I learned about mid-day chemo is to ask for a sack lunch. I don't know if other cancer cernter's have them, but they do here. Bed, warm blanket, sack lunch, it's almost like a mini-vacation! I know someday I won't feel that way, but I'm making the best of the situation.

So this time I'm on a different chemo, cabazitaxel. It's another Taxtane like docetaxel, so I'm assuming the side effects will be similar. One big difference, though, is that there's Benadryl in the pre-drip. I ended up sleeping through most of my chemo, and it was really kind of nice. Other than that, chemo was rather uneventful. My wife drove me howand within a few hours I was in bed and out for the rest of the day.

Cycle 1 done, so lets see what the next three weeks will bring me. I also forgot to take my meds, so I'll start that tomorrow.

Labs Follow Up and the Clinical Trial

Well, my PSA has risen again, this time up to 37. This is the third consecutive rise of my PSA and three times is enough to consider my prostate cancer as castrate resistant and time start looking at second-line medication. But first an explanation of what's likely going on.

Castrate resistant cancer means your PSA is rising despite being at a castrate level of testosterone. The chemo I went through killed cancer cells. Not all of them, but a good number. The Lupron (which I receive as a shot every three months) signals my pituitary gland to tells my testes to produce any testosterone. Prostate cancer thrives on testosterone and Lupron is a first-line hormone treatment to prevent your body from producing it. However, my prostate cancer will eventually begin producing its own testosterone, which is known as castrate resistant prostate cancer, and that's where I am..

Last year I started first line standard of care treatment for for high volume stage 4 prostate cancer. Thanks to the CHAARTED clinical trial it was found that chemo (docetaxel/Taxotere) combined with Lupron had more efficacy than either alone. So that's the treatment I had the first time around and it was quite effective. Though my PSA is 37, I feel reality good considering. The Oxycodone works well with the pain I do have and I don't need to take it every day.

So on to the next step. Second-line treatment in my case would be abiraterone (Zytiga). There's a clinical trial currently open that I qualify for, the CHAARTED2 trial. It's very simiarl to the CHAARTED trial I mentioned previsously. CHAARTED2 is testing the efficay or abiraterone alone vs abiraterone compared to abiraterone with chemo, which would be cabazitaxel (Jevtana). It's a non-blind, randomized trial, so if I join the trial, I'll be randomized into one of two study groups.

A quick note: abiraterone will prevent the testes from producing testosterone, but it also prevents the adrenal glands, which also produces testosterone, about 10%, from producing testosterone. And abiratereone also stop the cancer itself from producing its own testosterone.

All clinical trials have fairly stringent inclusion and exclusion criteria, and generally some preliminary tests. So after talking to my oncologist we decided to  move forward with trial. She brought in a clinical trial coordinator and we went through the 21-page consent form (this process is called "informed consent") and since I was ready to start and I had no issues the consent, I signed the form and the wheels started rolling. I would have three scans before I got randomized: a PET scan, a bone scan, and a CT scan. Those would be scheduled within the next few days and we scheduled a follow up for two weeks from today, Monday October 22.

Year Two, Here We Go

I haven't been very good about writing here on this blog. If I want to document year one any more than I have, I'll have to go from memory. That said, this weekend is the one-year "cancerversary" from when it all began. A year ago today (I'm going by weekday, not date), October 6, 2017, I had my PSA checked because I was having some obvious symptoms, which I documented in an early blog post.

So today (one year from when my GP called me with  my initial PSA results), I'm going in for my six-week lab work. My PSA started at 5,306 last year and went down steadily during chemo and with Lupron shots every three months. Sometimes my PSA would go down by consistently by 30 or 40 percent each checkup while during treatment and for a few months after. We got all the way down to 22, which is still a pretty elevated level, but compared to where I started it was nearly miracles. As it stands, 22 is my nadir.

Twelve weeks ago my PSA rose to 24. Then six weeks ago it went up to 27. Depending on today's labs, we'll probably start talking about second line treatment. My oncologist and I have discussed various options, but we wanted to wait to see if the PSA would go up again. There's a clinical trial I might join. It's the CHAARTED2 trial that is a phase 2 trial testing the efficacy of Zytiga by itself as comapared to Zytiga and cabazitaxel (Javatana) together.

So I'm going to try and document year two more in real time. Chemo brain or not, my memory isn't what it used to be. And it didn't used to be much...

Pain Scale

While we're on the topic of pain, I always try and rate my pain level accurately. There are a lot of pain scale charts and images out there. One I really don't like is the one with the faces:

I do like pain scales that give me more objective and descriptive terminology for each level of pain like these two:

And for those days that I laugh in the face of pain, here's one of my favorites.

Pain Admission

Fortunately I've been pretty pain free the last year despite the mets. Most of my pain has been from nerve damage and inflammation. Generally it's been bearable and I have a high threshold for pain. However, I've found that I'm not admitting to my somewhat increased pain in fear that it's an acknowledgement of disease progression. I finally vocalized that in support group yesterday and the general consensus was what I already knew. Get something to take care of the pain.

So today I emailed my oncologist and said I needed something a little stronger than ibuprofen for the periods of acute pain. The chronic pain is still bearable, but there are times it's not. So within an hour or two I had a prescription for Oxycodone (5mg tablets). My oncologist is a palliative care specialist - board-certified and fellowship trained in hospice and palliative medicine. My oncologist is an amazing person. I'm one lucky patient.