Jeff’s PSA has been trending up since March. As of today, it dropped by 166! It was 476 and today he’s at 310! Woot woot!
We saw the oncologist and bone biopsy results were back. Jeff does NOT have neuroendocrine or small cell!!!
Additionally, his liver levels have been elevated the last 2 checks and as of today, are now in normal range!!!
Chemo infusions are done (for now?). Jeff completed 5 rounds of Docetaxel (Taxotere). He was given the option to go ahead and complete the 6th infusion, but he decided against it (with his oncologist’s approval). Jeff was put on the oral medication Abiraterone (Zytiga) and Prednisone. In lieu of killing the cancer, they plan on starving it.
Jeff’s hemoglobin is still dropping and is currently at 7.4. We’re nearing transfusion levels again.
Jeff has “medium” fluid retention in his legs/ankles/feet. Today, the oncologist heard fluid in his lungs. This causes concern for possible heart issues.
Jeff is scheduled for an ultrasound on his heart to ensure all is well. His orthopedic consult has also been scheduled now that bone biopsy results are back.
Overall, it was a good news day!
Oh, palliative care had amped his meds at the beginning of the week. Today when I asked how his pain was, he retorted, “I don’t have any pain”. Finally, pain levels are managed!
❤️🥳
I’m just so happy.
#teamjeffgallagher
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Pancake_Lefse
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I’m nowhere near as knowledgeable as you and our journey started in December 2020. I’m still learning.
We believed (and feared) it may be neuroendocrine or small cell because that’s what Dr. Kwon implied it might be due to Jeff (seemingly) not responding to the Taxotere. His thought process at the time was Jeff needed a platinum-based chemo.
Although I forget which, I *think* we were advised neuroendocrine didn’t make PSA, but small cell did. Maybe I’m utterly confused on this?!
When we saw Dr. Kwon for the first time, Jeff was on the decline. Numbers were either sky rocketing or plummeting and his pain was excruciating and unmanaged.
Dr. Kwon ordered the bone biopsy to rule out neuroendocrine/small cell, which thankfully it did.
Subsequently, we saw a medical oncologist who suspended the plan to move forward with the taxotere/carboplatin infusions pending the bone biopsy results.
As it turns out, Jeff doesn’t need a platinum-based chemo.
Neither small cell or any other kind of NEPCa (small cell is one type of NEPC) express PSA. I wish you would have asked - could have saved you some anguish. I think carboplatin improves results of taxanes regardless of NEPC.
Is there a reason you have to go to Mayo? My impression is that they are relatively weak in urologic oncology. If you live in Minnesota, you may be much better off with Charles Ryan or Emmanuel Antonarakis at UMinnesota.
I’ll definitely keep these other doctors in mind, but swaying Jeff to transfer his care will be near impossible. Just getting him to agree to see Dr. Kwon took months.
I’ve felt more at peace knowing that Dr. Kwon will be weighing in on Jeff’s case.
Admittedly, I was not wowed by Jeff’s first oncologist and we’ve only seen the new one twice. So far, I like his style, but also know he’s young and simply doesn’t have the experience I would hope for.
Congratulations for both you’se guys ….pain managed , not small cell and psa declining…… thanks for bringing some good news to the group for a change. The bad to devastating news has been thick here lately … I for one am thankful hearing some “ good “ news . Big fuzzy hug out to you both, hope your good news holds for a long while so you can enjoy summer to its fullest.
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