Quick history: dx 10/17, metastatic stage 4 with large tumor in the pelvis. Had docetaxel, Lupron and Zytiga. PSA went form 34 to undetectable in 4 months. Convinced the oncologist that I was oligometastatic That led to 42 sessions of IMRT in summer of 2018. Insurance did not pay, saying local treatment was not necessary for systemic disease. The University of Chicago has never asked me for a penny of what insurance did not pay.
We decided to stop meds at end of June. I have some GI issues, which can be the subject of another post, but...
PSA test today showed still undetectable! Testosterone bouncing back, and I am still (detectable) cancer free. I’ve been on this site long enough to know that most men don’t do as well as I have, so there is only one thing to say. THANK YOU GOD.
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Canoehead
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One thing I'd like to add to the thanks in your posting is a thank you to your radiation oncologist at the University of Chicago, and to the U of C management for not charging you above what insurance paid.
Here's hoping that the RO got every bit of the cancer!
That’s an interesting issue. The RO that put the treatment plan together was at the main campus at Hyde Park and worked with my MO, Russell Szmulewitz (I am a big fan). I met the RO once. The treatment, including the mold they made, was all done at the outlying facility at Orland Park. That RO, Renuka Malik, who supervised the actual treatment, was totally skeptical about the treatment, sticking to the belief that metastatic cancer could not be cured. She philosophically objected to the guys on the tumor board in Chicago using the word “cure.”
Dr. Malik and I talked a lot during those 7 weeks of radiation. Her concession at the end was a hug where she said, “I don’t know if we have cured you, but you are at least in for a very long remission.”
This leads to an obvious but actually difficult suggestion - make your doctors your friends.
I'm on the same path -- will finish 44 zaps in two weeks. My RO, at Methodist Hospital in Minneapolis, is all smiles, suggesting lupron/aberatarone vacation is in the near future. Genesis of this regimen came from MO at Kaiser in Denver and MO in Minneapolis (I moved, so when I perished I'd be closer to the graveyard) and the RO, all of whom cited the STAMPEDE trial. Between aberaterone and oligometastatic-focused radiation, I may adopt a child so I can name him Stampede. And if you can find an RO who uses the phrase "outside the box," you should embrace him.
The key, of course, is "oligometastatic," or "light burden" -- which means few mets and not-too widespread, a luck-of-the-draw situation.
BTW, Tall Allen, I suggested that 22 zaps might be enough, and the RO bridled, saying he didn't want the mets coming back. He was a belt-and-suspenders kind of guy. I sheepishly nodded. He conceded that the lighter regimen was in use in the U.K., but had consulted with a mentor in Wisconsin and preferred the full course.
My RO said the same thing...why not irradiate a wider area as opposed to doing SBRT on the "observable mets?" I followed his advice. In any case there's no clinical evidence that this RT does any long-term good.
That's awesome news. I know cancer isn't supposed to be a competition, but when I hear stories like yours I see it setting a bar that I'm going to try to jump over.
That’s great news! I finished 6 docetaxel treatments 7 weeks ago & my PSA is undetectable but doc wants to continue Luton for a year. I read about those who have taken a Holiday from Lupron & I long for that. I am not myself & feel dingy, tired, & empathy for my beautiful, loving wife who has been very supportive & patient. How many months of Lupron injections did you have before stopping? I know it’ll be risky but my scans show the chemo did it’s job.
Thank you for sharing & I hope you’re in remission many years to come brother!
I did Lupron for 18 months, 9 of which were after radiation ended. Did Zytiga for 15 months total. Having abdominal/pelvic scans next week, mainly to try to figure out why I’ve had diarrhea the last 3 months. Blood work is being done every 6 weeks.
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