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Nothing left to offer in the way of therapy?
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.
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I disconnect the pump at home as well. We were trained at the hospital and wear full protective gear when disconnecting. We do this because we are 2 1/2 hours from the hospital. After the third or fourth time it becomes much easier.
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1 ReactionI had that regiment when I was first diagnosed (over 3 years ago(. I had a third drug too which I currently cannot remember what it is called). I had to do the pump and my husband was taught how to disconnect my pump. I was on it for about 6 months. I had a clear PET scan and stopped the chemo.
I hope I didn't already answer. My brain is out of whack from the chemo.
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1 ReactionHow did today's appointment go?
Hi Maryanne, this is Beth. I'm so sorry to hear that liver mets have been discovered and I'm curious about how your surgeon intends to remove those? I think you may recall from our last communication that I am trying to get liver mats addressed. Have learned more about the hypnotripsy procedure but have not had a chance to post here yet. Perhaps week can talk soon.
A personal friend of my family had surgery at JH and had an excellent experience. He was told in another city at a major medical center that because of a solitary metastasis in the liver he was inoperable. Had a second opinion at JH and had surgery for the pancreatic tumor and the solitary liver metastasis after neoadjuvant Folfirinox and has done well. Best wishes as you continue your journey
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2 ReactionsSorry to hear your news, but glad they caught it! Hope you are able to get that beast out ASAP!
Prayers to you. Keep fighting.
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1 ReactionAn update on me.. after further consideration by my local team and conferring with John’s Hopkins (what a privilege!) surgery will be delayed. I am going to jump on Gemzar for a few rounds to hopefully clear anything systemic. You know, those “roomers”! Hopefully existing tumor shrinks and nothing else pops up!
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3 ReactionsSorry to say that my brain is so muddled these days that I'm not sure I can tell you about my speculations regarding the mRNA vaccines for Covid-19.
What I remember is that I was not up to my usual ability to respond to help for requests on a couple of historical projects I have supported for a decade or more. And that each booster seemed worse. Possibly I believed it was a "flare" of my long-standing, self-diagnosed I B S which had been controlled for decades by avoiding foods that caused diarrhea. In retrospect, I now wonder if that was my Pancreas starting to develop exocrine deficiency. If that is true, then I may have had a failing pancreas for up to a year before I had a proper Diagnosis.
Hi!
Do you mind me asking who the surgeon at JH was? If not permitted, I understand.
This was my father's situation. He was scheduled for a Whipple and due to a solitary met in the liver, was no longer offered the surgery. We were all heartbroken. Instead, the surgeon did a gastric bypass and biliary bypass (so that my father could eat), and no resection. We consulted a surgeon at NYU ( who came from JH), and he said he would operate in that scenario. Unfortunately, this was after the the bypass surgeries left my father off of systemic treatment for two months, and the cancer progressed further in the liver. I am so upset to feel a surgical opportunity was there to potentially save his life. I know once considered metastatic, the standard thinking is that surgery is no longer a curative option, and that being off of systemic treatment to recover is more harmful. In this case, he had to remain off treatment to recover, regardless... so why no resection?
Are you thinking of leucovorin?