My Cancer Journey

June 2015: Went in for my annual physical exam, every thing looked good, routine blood work was drawn, then I went fishing the evening hatch.

Probably nothing

A couple of days latter the clinic called, asking me to come in for a follow-up from the exam, (I thought now what?), the doc probably wanted a stream report. I waited in the exam room, flipping through a new fly fishing magazine when the doctor finally came in with his rolling lap top stand, (I always liked his TU stickers on it).

He got right to it: PSA 16, need to see Urologist immediately, booked me in for the next day. At the Urologist; digital rectal exam, normal; I told him I had prostatitis ten years prior with elevated PSA, ended up going through biopsy with negative results. He agreed that with that history it was probably nothing, as I had no symptoms there was no need for antibiotics. He did request I do another PSA in six weeks.

Aggressive adenocarcinoma

Fast forward, results came in: PSA 46, biopsy three days later. My wife and I went to his office for results (his standard procedure so I was told). He had a serious expression on his face; pulling no punches he stated the following, “this appears to be a very fast aggressive adenocarcinoma of the prostate, Gleason score 4 + 5 = 9. Let me book you a really good local oncologist.” I said no, get me into Dana-Farber in Boston (a snap decision, one of the best I have made).

Meeting with the team

The following Tuesday I was meeting with my oncology team; Surgeon, Radiologist, and Medical Oncologist. Each explained what options they had to offer, but first a battery of tests, CT scan with contrast, PET Bone scan, MRI, blood work, and Pathology would evaluate my biopsy slides. Two days latter we were back to meet with the team, however the team had shrunk to one: Lauren C. Harshman MD, the medical oncologist.

Her news was sobering yet hopeful. “Bone scan: multi focal areas of tracer uptake seen in skull bone, thoracic spine, bilateral ribs, right scapula or underlying rib, left iliac crest, and right ischium are consistent with with high volume bone metastases. No soft tissue involvement.” Stage IV. In her next breath she stated ” you will not die of this disease. This is fast and aggressive and that’s how we are going to treat it”.

Treatment starts

And thus started the journey: 09/22/15: Started Bicalutamide; treating a metastatic adenocarcinoma of the prostate initially with a PSA of ~50 and Gleason score 4 + 5 = 9 disease with high volume bone metastases. Following Lupron (every 12 weeks for life), 6 cycles of Docetaxel (every three weeks), PSA nadir at 0.03.

Lost hair on round 2, had to stop work for rounds 5 and 6. The first four rounds the side effects fatigue, vomiting, muscle and bone pain was tolerable but became increasingly difficult to handle as treatment progressed. Discontinued Bicalutamide after nadir in April 2016. The rest of 2016 was quiet, the usual PSA monitoring and the occasional CT and Bone Scan and every 12th week Lupron. Back to work in May.

A new lesion

2017 saw the year start with intense left hip pain, CT showed a new lesion on the left femoral head. Multiple radiation treatments provided relief from the pain. 02/21/17: ED evaluation for L hip pain at Leominister Hospital. CT left hip indicated a lesion in the femoral head, 04/03/17-4/7/17: XRT to T10-L3 for 5 fractions. 04/10/17 was re-started on Bicalutamide with nice decline in PSA but PSA then began to rise having gone off of Bicalutamide (stopped for fatigue). 05/19/17: MRI hip: lesion in left iliac wing region; the left iliac wing got radiation in one shot, it was the only "sun burn" I got that summer.

Clinical trial

The PSA had declined but then started to rise, then Dr. Harshman proposed a clinical study (this is exactly why I went to Dana-Farber), the concept was to use Pembrolizumab (Keytruda) with Radium 223 injections to see if a synergistic effect could be created.

After a steady PSA rise I went on clinical trial 16-498: Radium +/- Pembrolizumab; randomized to combination arm, C1D1 on 1/11/18. Had to jump through many hoops to be on this trial; complete CT, MRI and PET scans, initial bone biopsy, 2nd one six weeks latter. I also had to leave work on long term disability.

Course complicated by pneumonitis (that landed me in the hospital for four days on IV steroids). Restarted pembrolizumab 7/26/18 thought might have been URI but then pneumonitis recurred 8/2/18. Discontinued Pembro (after 7 rounds, booted from the trial, I was warned of the possibility that my immune system might attack my organs). Continued on radium-223 injections, final dose 8/30/18.

PSA decreased, likely due to steroids given for pneumonitis. Now on abiraterone (Zytiga) /prednisone, since 11/1/18 with good PSA response.

Current challenges

Well that sort of boils down four years of the ups and downs in my battle with prostate cancer, but life likes to throw some curve balls:
- 06/23/17: Seen in melanoma clinic for concerning mole on R upper back; shave biopsy consistent with malignant melanoma, nodular subtype, invasive to 2.4 mm.
- 07/6/17: Underwent wide, local excision (5x15 cm) and R axillary sentinel biopsy node. Negative margins and LN on anatomic pathology.
- 07/20/17: Seen by Melanoma team--PET/CT negative, no need for adjuvant therapy.

I had an interesting conversation with the head of the Melanoma Clinic regard this clean bill of health, he told me that this cancer has a nasty habit of reappearing years down the road in places like the liver or brain (non skin areas).

On the plus side I was on seven rounds of pembro which is the only agent successfully working on metastasized melanoma and this may prevent this from occurring. On the down side the surgeon banned me from fishing for seven weeks, bummer, but the scar is impressive. My life is relegated to hats, long sleeve shirts and pants and sun screen year round, along with quarterly full body inspections at the melanoma clinic.

Planning our lives

The journey continues, 6/4/19 Pulmonology has “graduated” me, i.e. no more regular follow up visits to their clinic, but if I redevelop symptoms I am to immediately contact them (and as they said the DF team keeps a close eye on me). I am now retired, I take my abiraterone/prednisone faithfully every day, every six weeks I go to DF for blood work (PSA and Alk Phos are the key indicators) get a Denosumab injection (every 12th week also a Lupron injection, been doing this for the last four years).

So we plan our lives on this schedule, traveling and adventuring (this is our substitute for the sex life we lost to Lupron, or so we say). Yes this battle has taken a toll on my family (my wife suffered a “nervous breakdown” right after my 2nd chemo dose, she had been fighting her own battle with cancer since ‘97). She is doing well both cancer wise and mental health wise (good drugs, and an excellent therapist).

I have also started seeing the therapist to deal with my issues with depression (side effect of several of my cancer drugs). I still fish, hunt and camp, although the neuropathy in my feet has worsened and is starting in my finger tips, it has added a new challenge in my fly tying and painting efforts.

When the Abi stops working it will mean looking at a new trial. Dr. Lauren has always got the next step planned out. The speed of developing new cancer treatments is moving at an every increasing velocity and efficiency, and that is our hope going forward.

As the great philosopher Ferris Bueller once said, “Life moves pretty fast. If you don’t stop and look around once in a while, you could miss it.”

Be Well, Fish On!