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2nd opinion would require a diag. lap within 90 days of last one
I am 70 and was diagnosed with Stage 1 pan can 9/23. Initially took Abraxane/Gemzar for 2 months, then stopped due to chemo- induced pneumonia/pneumonitis in Nov and spent 5 nights at Moffitt hospital in Tampa. The plan was to go to surgery as chemo shrunk tumor in pancreatic neck from 2 to 1 cm. But Ca19-9 increased to 1400 ( Moffitt uses the highest reference range in the country from what I’ve been told).
Prior to doing surgery, I needed a diagnostic laparoscopy. The results of 2 biopsies and peritoneal washings were negative.
But then I was told I needed a repeat PET scan (first one done Oct 2023 was negative).
Repeat PET 1/2/24 was negative. But still they told me surgery was not an option even though Ca 19-9 went from 1400 to 960 with no chemo.
I restarted a 70% Folfirinox dose on 1/10/24. No side effects so far but I’ve read that will not be the case going forward. The current plan is Folfirinox twice a month, then re-evaluate for surgery in March.
Meanwhile, I was accepted at Mayo Rochester by Dr Truty for a 3 day second opinion evaluation on March 6 and to continue the Folfirinox until then. This would include yet another PET scan and CT scan which I’m OK with. But Dr Truty would do another diagnostic lap, barely 3 months after my last one.
Does anyone have any info/feedback if this is standard protocol? I have read that Dr Truty is more likely to do surgery compared to other surgical oncologists and is top notch.
My appointments at Mayo are from March 6-8, then flying back to Fl the day after the laparoscopy.
My other option is to stay in Fl and have an initial meeting with a new surgical oncologist in March 11 to get her opinion if I am still a surgical candidate after 2 months of Folfirinox. Assuming I can tolerate the Folfirinox better than Abraxane/Gemzar. Although apparently lung toxicity is a concern with this regime as well.
(My first surgical oncologist abruptly told me he was leaving Moffitt at my December appointment). .
Would appreciate opinions, should I go to Mayo or stay in Florida and just continue with Moffitt? Either way, I would still meet with the new surgeon at Moffitt on 3/11/24.
Thank you!
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I can't speak to any of the big questions you ask (sorry!). But I noted that you plan to fly back to FL the day after the laparoscopy, and I wonder whether that's the best move. You'll have full anesthesia, of course, plus the fatigue of surgery (a simple one, but still) three months after the first one. And you'd need to move luggage or a bag through the airport and such. If it were me, I would stay an extra day in MN to give myself some recovery time. I'm not a medical professional of any sort, just a pancan patient who's inoperable, so take what I offered with many grains of salt. 🙂
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1 ReactionI agree with you completely!
The rationale was that I have my first appt 3/11 in Tampa with the new surgical oncologist so would need to be back in Fl by 3/10.
But maybe I can get a later appt.
Appreciate your feedback and all the best to you.
mbcfl,
You can read my sister's story by searching on my name.
Please consider planning to move to Rochester. The difference in care and outcome between there and your local facility (unless it too is a pancan center of excellence) is significant - it's why Mayo Rochester, like a handful of others in the US are considered centers of excellence. The difference in oncology is also significant, as is the difference in testing and analysis - even things like reading scans.
I believe Moffit is considered a center of excellence. Another one closer to you with an incredible physician, is ATlanta Liver and Pancreas Center with Northside Hospital. Dr Abdalla heads the tumor board and is extremely consultative and knowledgeable. If you have joy in your heart and the will to live, he will architect a plan. Everyone’s is not the same. He explains it well and monitors closely. He does high volume of surgeries or their clinic would not be given pancreatic center of excellence. I would suggest you speak with him if Mayo Florida is not an option. He has operated on me 3 times with careful staging. I was diagnosed stage IV 11/2021.
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2 ReactionsThere are actually several pancan centers of excellence in Florida on the National Pancreas Foundation list and on cancer.gov. Mayo Jacksonville is on both lists. Can physicians there consult and coordinate with physicians at Mayo Rochester?