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One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

New Scans

The end of March 2022 would bring new CT and Bone scans. There was nothing in the soft tissue but the bone lesions were active. This included T5 that we radiated just a year ago. They will not radiate the same spot again, there is concern it could damage the spinal cord. So we need a different treatment.

Oncologist Visit and New Treatment

The beginning of April would bring anxiety and my oncologist appointment. I had a gut feel I was going to facing chemo but Beth disagreed. She said he has something else in his pocket. As usual she was right, doctor suggested we do Xofigo, which is a Radium 223 treatment. I would have six treatments four weeks apart. I would have an IV started then the Radium 223 isotope would be put in the IV. The Radium has a sort of binder with it that allows it to attach to the prostate cancer on the bones and radiates those spots. So for six months I would be radioactive internally. The first three to four treatments I was doing pretty good. The last two would take its toll on me. I lost most of my energy and didn't feel like eating. I had a lot of muscle mass loss since I had no energy to work out. Just making it through a work day was more than I could handle a lot of days. Doc said it would take around six weeks to start feeling better. My last treatment was Sept. 21st, six weeks afterwards would be the end of November. In October we took a vacation to Tennessee in which I spent most of the time sleeping. It was much needed.

When Will the Extension End?

Before starting Xofigo my PSA was at 1.48. At the end of October after treatments I was at 1.05, so I had a benefit from the treatments. December would bring the beginning of the end of this extension. PSA would rise to 1.39, almost what it was before treatments. January would bring 2.27, it's definitely time to start figuring out what's next and we would start with a bone and CT scan. My mind started going astray and again I'm thinking this time it's chemo and again Beth says I don't think so. The oncologist said the two scans did not give him all the information he needed so he requested a PSMA pet scan. I was denied this scan a year ago, but this time we had inconclusive results from the other two scans and it was approved. This would happen in February. I saw my oncologist on the 1st of March and the PSMA scan only showed activity on the bones and no soft tissue activity. PSA went up to 3.51. Next step see the radiation oncologist in April and get ready for extension five.

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

Time For a New Plan

The first thing the doctor suggested was to have it radiated. They have a radiation center there that could spot treat the tumor on T5. So off to a new radiation oncologist. The treatment was done in July 2021 and would be ten days of radiation to the spine. No special prep for this like the prostate radiation needed, just CT simulation. The RO and techs were all great. Towards the end they kept asking if I was having any heartburn. I didn't until about two or three days left. I was given oral Lidocaine and told to mix it Maalox before eating. This wasn't really heartburn, it was an irritation in the esophagus. See this radiation was shot from both the front and back, the esophagus took some damage. When I swallowed and it hit that point if felt like broken glass going through it. So I tried the Lidocaine, it tasted like crap and every part of your mouth and throat that came in contact with it became numb. I couldn't hardly tell if I was swallowing. I only used it a few times. I decided it was easier to eat small bites and chew it until it became like baby food. Then it went down without much pain. But believe me, if I forgot on that first bite it would almost put me to my knees. Luckily it pretty much went away after three weeks.

The End of Three

August's PSA would come in at 0.49, great we got it! September dropped to 0.24 and November 0.20. I'm liking what I'm seeing, I'm lower than I've been for over a year. I started feeling confident that this trend would continue and had no worries about my next test. We would go two months before the next set of labs. The middle of January would be it and I knew it was going to be even lower. Time for a gut punch, it came back at 0.47. March would go up to 1.48! That's three fold in two months. Not what we wanted.

Time For the Realization

Sitting in the exam room with Beth and my medical oncologist after the March results, my MO said "We got you nine months with this". That's when it really hit me about the meaning of a life extending treatment. That's what it has come down to. How many life extending treatments are available and how long will they last. Of course there are no answers to this. Thank God there are new treatments coming out usually every year. No doctor can say for sure what's ahead of me and how much time there is. I've left that to the Lord and let his will be done.

One advanced prostate cancer survivor's story of living through incurable prostate cancer with one life extending treatment at a time.

How Short Can a Life Extension Be : Short

Not only did they change me from Zytiga to Xtandi but I was changed from Firmagon shots, first to Eligard in April and then Lupron shots after checking my testosterone and finding it was out of range high. Now that doesn't mean I had more testosterone than I know what to do with, it meant I was running above 50. Normal men would be several hundred. PSA would drop from the 3.25 in January to 0.35 in February and 0.31 in March. We're back on track, things are looking good. April would bring an end to that with a PSA of 0.63, almost doubled in a month. Three weeks later 0.78. Another month would be 1.21, definitely trending back up. I was having some pain in my upper spine during this. It was time for a new scan. I didn't qualify for the new PSMA pet scan, instead I had a bone scan and CT scan. The pain was justified the T5 vertebrae had an active tumor.

The End of Two

This extension gave me five more months and I am considered castration resistant. That is when the hormone therapy no longer can control the cancer by itself. This means additional treatments on top of the hormone therapy. I still wasn't seeing these as life extensions just part of the journey. The realization was coming.

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