Nothing left to offer in the way of therapy?

Posted by ajh5285 @ajh5285, Jun 1, 2023

What did you do when you yourself or a loved one was informed by the oncologist that s/he had nothing else to offer.

Having had a repeat CT/PET scan today (1 June 2023) to check on the status of my adenocarcinoma of the pancreas (finally diagnosed in late September 2022), the preliminary results have been reported as, what I can only describe as, at best ambiguous. Some findings today were slightly improved, none remarkably improved, and some slightly worse.
I have a medical background, including training in radiology and other imaging techniques. Although it was many years ago now, I believe I retain enough knowledge to understand what I've read.
I am trying to hold my Anticipatory Anxiety at bay until after my scheduled appointment tomorrow with my very busy oncologist. I hope he will finally have enough time after the last couple of rushed appointments to have a serious discussion about what, if any, my options might be at this point.
As further background, as best as I can now recall
I had one serious GI infection as a young adult (lost 10 lbs in a week thanks to both vomiting and diarrhea; even had the worry about dying soon that is supposed to happen many times after a life-threatening illness). This may have been about 1973.
In 1984, I had Guillain-Barré syndrome following becoming involved in a dysfunctional relationship (hospitalized for one month, back to work full time after 3 months; walking normally some 11 months later; final lingering symptoms of numbness in my toes finally resolved in 2001 after starting regular deep tissue massage)
A vague recollection of being told by a GI doc not to be impatient that my gut needed time to heal; I don't remember the precipitating circumstances, but believe it was probably GI bleeding serious enough to land me in the hospital, after which I was sent home with a steroid prescription (probably prednisone) which was tapered from a high of 65 over some interval before stopping) This episode is long enough ago now that it was not moved over from paper charts to Epic when my hospital started with that system, and I am uncertain about when this happened other than it was after 1984; I believe it was stress induced.
Starting about January 2022, I had an increase in the foods I could no longer tolerate without developing diarrhea. At the time I believed it was a flare in my I B S (which had been under good control as long as I avoided known trigger foods).
Now, I wonder if it was, instead, the first sign that my pancreas was starting to develop exocrine insufficiency.
I will refrain from going further astray by speculating about the possible role of the mRNA Covid vaccine in this sorry story, since it may distract from your answers about how you handled being given what can seem like a death sentence.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

My preliminary approach has been to follow my oncologist's recommendation to switch to a modified rescue regimen involving the FOLFIRINOX protocol - (no oxaliplatin)
It's early days yet. That said here's the good, the bad and the ugly of my first time on the new treatment plan
Good: pre-existing chemo-related numbness in feet continues to resolve, with sensation to the soles of my feet to Normal (not just baseline after first rounds of G-A protocol)
Bad: reoccurrence of initial presenting Sxs (urgency & loose stools)
Ugly: a very bad reaction occurring within 30 seconds of starting the lysosomal Irinotecan -- scary since the pain was so bad I was inadvertently screaming out OMG (my nurse had left the room, clearly not anticipating any reaction). My screams brought a whole slew of medical professionals running, including the Doc covering the unit. It was decided that this was most likely a known reaction described as "lower back pain." I was given low doses of Benadryl and Dexamethasone; and after an hour with no more symptoms and throbbing gradually mostly gone, my infusion was resumed with no further symptoms. I also had a prescription for an anxiety drug provided by my oncologist, but between the doziness following receiving Benadryl, and perhaps some mild euphorias from the low dose steroid, I had calmed down. I was also given several injections of a tiny dose of Atropine, I don't remember now what the reason was.,, but I was not actually "shock-y" at the time; in fact my systolic BP was quite a bit higher than even what is induced by "white-coat- anxiety."
For follow up I'm supposed to take a small dose of dexamethasone for 3 days, and I have Imodium on hand to control any more diarrhea.
I am planning on taking it easy today, partly to try to calm down the current reactivity of my body (once one part goes a-kilter, others follow =? an argument for treating the whole patient).
Partly to try to avoid tangling and kinking the lines to my infusion pump. (Yes the package from the entity that fills prescriptions on behalf of my university hospital is what I would describe as user-hostile. Their recommendation for a wearable contraption to allow mobility is to point out the some patients choose to pack the supplied unit in ANOTHER FANNY PACK. Really? knowing that your patients typically have tumors in different areas of the abdominal cavity which are best avoided to prevent additional pain, it wouldn't have been possible to add another adjustable (up and down) strap to help stabilize the pack, avoiding further chance of interruption to the pump.
And partly to distract myself. For instance, I will try to avoid Podcasts that that merit comments like "there's nothing like attempting to fall asleep to catastrophe [The worst year in human history 536]. "
Hope this helps!

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@gardenlady1116

We are with you. Your story could be my story. Keeping you in my prayers.

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and you also.

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Thank you to all who post here. Really! This sharing is so important.
This morning I meet with a noted doctor at JH. From this forum I have crafted many questions. Let’s hope I can get some illumination for all of us.

PS-I thought I was going to discuss proactive measures but scans show a new met in liver. Surgeon called last night. Wants to get it out immediately. So… let’s see what is next! So grateful for scanning technology and our amazing medical community.

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@ajh5285 . Did you have radiation as part of your treatment plan? if so, what were results?

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No radiation.
I'm not sure why it was not offered.
After reading a lot of posts from y'all on M C C, I can guess it was because they thought my presumed lung metastases were too much to try to treat along with the entangled blood supply to my pancreas.

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I totally agree with you when you say thank goodness for this forum. We have all learned so much from one another And it is comforting to know that other people out there are going through similar circumstances and understand !!! Thank you for sharing
Sincerely Susan

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@ncteacher

I don't understand why you would be responsible for disconnecting your infusion pump. At my oncology practice, they schedule an appointment for the chemo nurses to remove the pump and then remove the port access. The infused drug (5-FU in my case) is highly toxic--the nurses wear PPE, full gown and gloves--and I can't imagine they want you to be handling that gear. Also, re the pump, mine comes with an over-the-shoulder carrying case; I didn't need to provide anything. The only thing I have to do is shut off the pump when the "I'm done" beeper goes off, which is typically an hour or so before the appointment to remove it. Finally, FYI re irinotecan, it can cause major GI upset. I had uncontrolled diarrhea for 6 days when I was given a dose at 80 percent of standard.

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Its called irinotecan. "I run to the can" and causes diarrhea

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@ajh5285

My preliminary approach has been to follow my oncologist's recommendation to switch to a modified rescue regimen involving the FOLFIRINOX protocol - (no oxaliplatin)
It's early days yet. That said here's the good, the bad and the ugly of my first time on the new treatment plan
Good: pre-existing chemo-related numbness in feet continues to resolve, with sensation to the soles of my feet to Normal (not just baseline after first rounds of G-A protocol)
Bad: reoccurrence of initial presenting Sxs (urgency & loose stools)
Ugly: a very bad reaction occurring within 30 seconds of starting the lysosomal Irinotecan -- scary since the pain was so bad I was inadvertently screaming out OMG (my nurse had left the room, clearly not anticipating any reaction). My screams brought a whole slew of medical professionals running, including the Doc covering the unit. It was decided that this was most likely a known reaction described as "lower back pain." I was given low doses of Benadryl and Dexamethasone; and after an hour with no more symptoms and throbbing gradually mostly gone, my infusion was resumed with no further symptoms. I also had a prescription for an anxiety drug provided by my oncologist, but between the doziness following receiving Benadryl, and perhaps some mild euphorias from the low dose steroid, I had calmed down. I was also given several injections of a tiny dose of Atropine, I don't remember now what the reason was.,, but I was not actually "shock-y" at the time; in fact my systolic BP was quite a bit higher than even what is induced by "white-coat- anxiety."
For follow up I'm supposed to take a small dose of dexamethasone for 3 days, and I have Imodium on hand to control any more diarrhea.
I am planning on taking it easy today, partly to try to calm down the current reactivity of my body (once one part goes a-kilter, others follow =? an argument for treating the whole patient).
Partly to try to avoid tangling and kinking the lines to my infusion pump. (Yes the package from the entity that fills prescriptions on behalf of my university hospital is what I would describe as user-hostile. Their recommendation for a wearable contraption to allow mobility is to point out the some patients choose to pack the supplied unit in ANOTHER FANNY PACK. Really? knowing that your patients typically have tumors in different areas of the abdominal cavity which are best avoided to prevent additional pain, it wouldn't have been possible to add another adjustable (up and down) strap to help stabilize the pack, avoiding further chance of interruption to the pump.
And partly to distract myself. For instance, I will try to avoid Podcasts that that merit comments like "there's nothing like attempting to fall asleep to catastrophe [The worst year in human history 536]. "
Hope this helps!

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I was told to take claritin after my chemo for a few days to prevent the back pain.

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I am so sorry to hear all you are going through. I am sending heartfelt prayers to you.
I am very interested in hearing your speculations about the MRNA covid vaccines. I suffer withpancreatitis from a botched ERCP with stenting. Perforation of the duodenum and bile burn of the pancreas. Now after my4th covid moderna shot my amylase and lipase are elevated and have intermittant pancreatic pain
Take care

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@ajh5285

My preliminary approach has been to follow my oncologist's recommendation to switch to a modified rescue regimen involving the FOLFIRINOX protocol - (no oxaliplatin)
It's early days yet. That said here's the good, the bad and the ugly of my first time on the new treatment plan
Good: pre-existing chemo-related numbness in feet continues to resolve, with sensation to the soles of my feet to Normal (not just baseline after first rounds of G-A protocol)
Bad: reoccurrence of initial presenting Sxs (urgency & loose stools)
Ugly: a very bad reaction occurring within 30 seconds of starting the lysosomal Irinotecan -- scary since the pain was so bad I was inadvertently screaming out OMG (my nurse had left the room, clearly not anticipating any reaction). My screams brought a whole slew of medical professionals running, including the Doc covering the unit. It was decided that this was most likely a known reaction described as "lower back pain." I was given low doses of Benadryl and Dexamethasone; and after an hour with no more symptoms and throbbing gradually mostly gone, my infusion was resumed with no further symptoms. I also had a prescription for an anxiety drug provided by my oncologist, but between the doziness following receiving Benadryl, and perhaps some mild euphorias from the low dose steroid, I had calmed down. I was also given several injections of a tiny dose of Atropine, I don't remember now what the reason was.,, but I was not actually "shock-y" at the time; in fact my systolic BP was quite a bit higher than even what is induced by "white-coat- anxiety."
For follow up I'm supposed to take a small dose of dexamethasone for 3 days, and I have Imodium on hand to control any more diarrhea.
I am planning on taking it easy today, partly to try to calm down the current reactivity of my body (once one part goes a-kilter, others follow =? an argument for treating the whole patient).
Partly to try to avoid tangling and kinking the lines to my infusion pump. (Yes the package from the entity that fills prescriptions on behalf of my university hospital is what I would describe as user-hostile. Their recommendation for a wearable contraption to allow mobility is to point out the some patients choose to pack the supplied unit in ANOTHER FANNY PACK. Really? knowing that your patients typically have tumors in different areas of the abdominal cavity which are best avoided to prevent additional pain, it wouldn't have been possible to add another adjustable (up and down) strap to help stabilize the pack, avoiding further chance of interruption to the pump.
And partly to distract myself. For instance, I will try to avoid Podcasts that that merit comments like "there's nothing like attempting to fall asleep to catastrophe [The worst year in human history 536]. "
Hope this helps!

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The Atropine is to counter the side effects of the Irinotecan. They didn’t give me Atropine one time and it was horrible.

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