Had FOLFIRINOX pre Whipple surgery: Questions about chemo after

Posted by anindita @anindita, Oct 6, 2023

12 rounds of folfirinox taken before surgery. Whipples on 31/08/23. Now how many round of chemo helpful. Any side effects? How helpful is it?

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@colleenyoung

@michaelhunn7474, you asked for suggested reading. May I ask a bit more about your experience with pancreatic cancer? Have you recently been diagnosed? What type of information are you looking for at this stage in the journey?

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@colleenyoung, I hope it's OK for me (not the orig. ask-er) to note which sort of materials wd've been helpful for me.

When I received my diagnosis, I had zero idea of where to go for info. A friend recommended pancan.org, but I found everything overwhelming. Trying to find the info I needed was like walking into a library with thousands of volumes and being told, "Go find the books by 18th-century English authors" without being able to use any reference tool to find the relevant AU names.
....... What I needed was a primer that laid out an overview in simple terms and in almost an outline form: "You've gotten a diagnosis of A; that means ____, and typical treatment is _____ but some doctors choose ____ and the rationale for these different treatments is _____. // You've gotten a diagnosis of B; that means _____ ..." and so on. And then something like, "You've finished chemo; here's what's likely to come next" or "You've had your surgery; here's what's likely to come next."
....... I don't even know what else I would have wanted in such a primer, bc I'm still quite ignorant about what one should do when one receives this particular diagnosis.
....... A glossary wd be helpful, as would be a listing of online resources -- websites that relate to pancan, a list of CoE, how to find clinical trials; beyond that, I have no ideas.
...... For ex., I didn't even know that a PET scan could be useful to determine, pre-chemo, whether my cancer had metastasized *and* why my onc. chose not to order one for me even tho there were nodules on my lungs ( = there was some ambiguity about whether my cancer had metastasized), and when you don't know what you don't know, you don't know what to ask your onc.
....... Also helpful in such a primer: @markymarkfl kindly shared 20+ questions that I should ask my surgeon; I would've been lost without that list, and even with it I still think I didn't really advocate for myself -- I felt sort of pressured into taking as little of his time as possible (not his fault, I think -- he's a nice guy), but I'm not really clear on why I had a Whipple rather than some other procedure, and now post-surgery I'm not quite clear on what the path. report said. So maybe a primer that leads the patient thru things like "You'll have an pre-op appt. with your surgeon; here are some questions to ask him/her. And be sure that you get the answer you need -- don't feel embarrassed about asking a 2nd time if you didn't understand an answer."
....... I wonder whether the Mayo Clinic would consider creating such a resource. (If it has already done so, apologies for having missed it.)

In short, I found it impossible to know how to begin gathering useful info after my diagnosis; I was passive and simply did what my drs. told me to do. Finding this (Mayo) site near the end of chemo has been hugely helpful, but I'm still sort of months behind where I need to be, info-wise.
....... My onc. gave me a binder full of info during my 1st appt. with him, but it was lots of discrete pieces of info (ex.: possible side effects; how to deal with them; nutrition; etc.) -- none of the overview that I needed to make sense of the diagnosis, to understand why my particular regimen was chosen, to understand what the next steps would be, to understand what I'd be hoping for 6 mos. or 12 mos. down the line. (My onc. explained some of the "why this regimen" but not all of it; this forum has helped me understand why neoadjuvant chemo was the choice for me.)

Sorry if this is too long and/or not helpful; it's hard to be concise when I'm still kind of confused. Thank you.

REPLY
@jk77

@colleenyoung, I hope it's OK for me (not the orig. ask-er) to note which sort of materials wd've been helpful for me.

When I received my diagnosis, I had zero idea of where to go for info. A friend recommended pancan.org, but I found everything overwhelming. Trying to find the info I needed was like walking into a library with thousands of volumes and being told, "Go find the books by 18th-century English authors" without being able to use any reference tool to find the relevant AU names.
....... What I needed was a primer that laid out an overview in simple terms and in almost an outline form: "You've gotten a diagnosis of A; that means ____, and typical treatment is _____ but some doctors choose ____ and the rationale for these different treatments is _____. // You've gotten a diagnosis of B; that means _____ ..." and so on. And then something like, "You've finished chemo; here's what's likely to come next" or "You've had your surgery; here's what's likely to come next."
....... I don't even know what else I would have wanted in such a primer, bc I'm still quite ignorant about what one should do when one receives this particular diagnosis.
....... A glossary wd be helpful, as would be a listing of online resources -- websites that relate to pancan, a list of CoE, how to find clinical trials; beyond that, I have no ideas.
...... For ex., I didn't even know that a PET scan could be useful to determine, pre-chemo, whether my cancer had metastasized *and* why my onc. chose not to order one for me even tho there were nodules on my lungs ( = there was some ambiguity about whether my cancer had metastasized), and when you don't know what you don't know, you don't know what to ask your onc.
....... Also helpful in such a primer: @markymarkfl kindly shared 20+ questions that I should ask my surgeon; I would've been lost without that list, and even with it I still think I didn't really advocate for myself -- I felt sort of pressured into taking as little of his time as possible (not his fault, I think -- he's a nice guy), but I'm not really clear on why I had a Whipple rather than some other procedure, and now post-surgery I'm not quite clear on what the path. report said. So maybe a primer that leads the patient thru things like "You'll have an pre-op appt. with your surgeon; here are some questions to ask him/her. And be sure that you get the answer you need -- don't feel embarrassed about asking a 2nd time if you didn't understand an answer."
....... I wonder whether the Mayo Clinic would consider creating such a resource. (If it has already done so, apologies for having missed it.)

In short, I found it impossible to know how to begin gathering useful info after my diagnosis; I was passive and simply did what my drs. told me to do. Finding this (Mayo) site near the end of chemo has been hugely helpful, but I'm still sort of months behind where I need to be, info-wise.
....... My onc. gave me a binder full of info during my 1st appt. with him, but it was lots of discrete pieces of info (ex.: possible side effects; how to deal with them; nutrition; etc.) -- none of the overview that I needed to make sense of the diagnosis, to understand why my particular regimen was chosen, to understand what the next steps would be, to understand what I'd be hoping for 6 mos. or 12 mos. down the line. (My onc. explained some of the "why this regimen" but not all of it; this forum has helped me understand why neoadjuvant chemo was the choice for me.)

Sorry if this is too long and/or not helpful; it's hard to be concise when I'm still kind of confused. Thank you.

Jump to this post

Well said and much appreciated by many, @jk77. Thank you.

REPLY

Agree w/ Colleen, very well said jk.

I think this forum could benefit from a well-curated FAQ section!

Does the forum software support sticky posts at the top, or a separate FAQ list?

REPLY
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