Tales of the Stupid Phoenix Bird.

[henukit]

Why does spring always hit me in the balls? Because I'm stupid?

Every bad health event throughout my life had happened in the time of Spring. 26 years ago, in the spring of 1994, I was slammed with ankylosing spondylitis flare of epic proportions. All joints swelled like popped airbags and hurt like burning hell. I couldn't bend or turn one, including the neck to the point it was painful to point eyes more than a few degrees off center. I was bedridden almost 3 months, lost piles of weight while being a tall skinny 150-pounder to begin with and looked like a malnourished prisoner on my wedding photos. At the end my butt was hard as cement and didn't have a spare place to stick a needle with anti-inflammatories which were given in enormous amounts to cool this fire down. Later, when I learned to live with this beast, it would sometimes flare up, thankfully not to the same degree, but in the spring again

Fast-forward nowadays. I learned to live with AS, put it into remission with lifestyle, diets, supplements, and new gen drugs when needed. But in the spring of 2018 I was miserable and suffering again from the totally new beast, thinking it was returning of the old one. In March I was diagnosed with metastatic PCa, Stage 4, GS 9 aggressive kind with prostate pushing on my hip nerve and a couple of mets in the spine. By end of the year after chemo, ADT and other therapies I was back on my feet with great results: markers were down, the mets were receding. Fall is a great time, folks!

Spring 2019 met me with strong back pain and markers going to the orbit. The one quickly growing metastasis was about to cut into the spinal cord so we had to shoot it with radiation beams first and then jump into the double chemo pool. It was a scary experience but the recovery was wonderful.

Spring 2020. The results of previous treatments showed remarkable improvements across the board. Markers are the lowest they have ever been, no inflammation, clear scans, no activity anywhere. Inspired, I'm starting the last leg of the attack plan: Provenge. But right after the first injection my port gets infected and I experience two scariest near sepsis events. Provenge is cancelled, ports are out and I'm on antibiotics trying to calm down my wild immune cells that were supposed to fight cancer by now. And then, suddenly, spine pain returns: strong, persistent, drilling into the nerve, taking my night sleep away, and stubbornly not responding to NSAIDs much. Is this a replay of last spring? Surprisingly, my markers turned out great, in fact, PSA is the lowest it’s ever been. So we are anxiously waiting for an MRI next week to see what's causing all this mess. Is this an old beast or a new one? In any case, they both prefer to show up at the same time of the year.

While looking at some beautiful pictures of our planet, I thought: Am I stupid or what? I could have moved to the southern hemisphere at the onset of spring and then move back by the end of their winter to be here just in time for the fall colors. That way my life could have been spared from these monsters as I would confuse the hell out of them by making my spring never come. Am I some kind of stupid Phoenix bird stuck in some sort of constant recycling loop? I certainly thought and lived like one, but I should have been a free migratory bird.

Seriously, why spring? (snip-snap! whoosh! crackle…)

[Tall_Allen]

Isn't Provenge precluded in men who have a history of autoimmune disease?

[Shooter1 in reply to Tall_Allen]

No balls to kick. Got chainsaw out and running for first time in 3 years. (tuned yesterday and cut till I couldn't stand up today.) First full sweat though of a shirt without hot flash for years. Three years into this fight and gaining strength after chemo and burns that kept me in the hosp. 3 weeks+ last Oct. Spring is rain on newly planted garden. Hoping for another 10 yrs, but all stage 4 gleason9/10 guys probably dream of that with me..

Best of luck to you with spring fever.

Doug

[henukit in reply to Tall_Allen]

Nope. There's no autoimmune contra-indication on Provenge. Since its mechanism is different from checkpoint inhibitors, it doesn't amplify existing immune response but simply directs it to a specific antigens (PAP). So my flare up is very unlikely the result of Provenge treatment but it's unfortunate infection incident may have pushed my system into the overdrive.

[Kuanyin]

Thank you for sharing. My season of dread is winter. I lost vision in my left eye and received my dx during that time. Originally, our plan was to spend part of the year in Kunming, Yunnan, China. The city of Kunming is located on a plateau which affords it temperate climate all-year-round. It's a city of flowers and is famous for the herbs used in traditional Chinese medicine. At the time we were considering living there, we could have purchased a condo for a very reasonable price. However, although Kunming, because of its altitude, 6,000 ft. above sea level and a relatively sparse industrialization, has managed to escape most of the pollution that plagues the rest of China, all of the craziness that country has undergone in the ensuing years probably justifies our decision not to live there. In any case, we live in So. California which provides us with decent weather most of the year. In fact, as I type this reply, I am looking at our little courtyard-garden with its array of colorful flowers and can even smell the sweet scent of Columbine through an open window. We do have much to be thankful for!

--K.

[j-o-h-n]

One book you should avoid: Silent spring, by Rachel Carson....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 05/18/2020 7:24 PM DST

[Wings-of-Eagles]

Henukit,

Thanks for all that info on your amazing journey so far. You are one strong....person! Your story about the difference between the spring and fall effects on your PC. Maybe you should be a migratory bird! Hoping one day to go beyond the Phoenix bird stage, all the way to Free bird.-love that song.

I hope for you the best possible outcome for the Provenge treatment. I truly wish I could have been approved for that 5 years ago, but I'm 5 years undetectable on Zytiga currently.

I don't know a lot about autoimmune disease, but I was intrigued by Tall's question and found something on ol google that might./...or might not apply.

Granted this is two years old and there is a statement that it has not been studied but there is a caution statement.

From a US News and World 3/16/18/ column on Provenge:

"The use of either chemotherapy or immunosuppressive agents (such as systemic corticosteroids) given at the same time with the leukapheresis procedure for PROVENGE has not been studied. PROVENGE is designed to stimulate the immune system, and using immunosuppressive agents at the same time may alter the effectiveness and/or safety of PROVENGE. Therefore, patients should be carefully evaluated to determine whether it is medically appropriate to reduce or discontinue immunosuppressive agents prior to treatment with PROVENGE."

Wings aka Dan in So Cal