Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Connect
May I ask what stage adenocarcinoma you had at diagnosis?
Stage IV.
Do you live in a rural area? I would question any oncologist suggesting the pump be removed at home. There are a host of concerns with this
especially being sure your port is kept sterile.
I did the pump for 7 months. It turns off itself and you push a button to turn off the “all finished” alarm. I also had continuing issues with neutrophils/platelets. As far as the side effects, my oncologist gave pre-meds that helped considerably.
I concur with letting a professional disconnect the pump and flush the port. Maybe your insurance can send a home health nurse to do that.
I did Folfirinox for 6 months, with the at-home pump for 46 hours. For sleeping, I wore the strap over my neck with the pump over my upper abdomen. I work a "rash guard" (surfer's skin-tight, breathable lycra shirt) over the pump to hold it in place, since I toss and turn between sides when I sleep. Very helpful. You could do something similar with backpack straps, ace bandages, sports bra, etc...
As far as alternate treatments go, there are numerous clinical trials, but challenging to find the right one. As mentioned before, check with PanCan and Cancer Commons, and also with other major medical centers near you.
If there's nothing appropriate near you, some of the trial sponsors will pay for transportation and lodging. The biggest centers typically have the most trials, but local-centric oncologists are often not aware of them. You could always contact the trial coordinators at Mayo, Anderson, Farber, Langone, Sloan Kettering directly.
There's one treatment that's in various trials, including a few related to pancreas cancer, that is basically free of side effects, called Tumor Treatment Fields. You wear a backpack and a couple antenna patches that transmit an electric field through your body to disrupt the tumor cell reproduction. I think it has only been studied in conjunction with other standard-of-care regimens, but it seems like an ideal alternative to study in patients who can't tolerate chemo/immunotherapy regimens.
My 85-year old dad with mesothelioma had to stop his immunotherapy in January, and has declined to try any other drug-based therapies. I keep hoping his oncologists can work out something with the TTF equipment manufacturer on a compassionate-use basis, but they don't seem willing to take on the additional paperwork.
Mayo has an open trial with the TTF equipment for pancreatic cancer, but the participation criteria are rather specific; I think you have to have visible mets on the liver, and have not been treated with gem/abrax/cisplatin before.
If you do a wider search for "Tumor Treatment Fields" and manufacturer Novocure you might be able to get in contact with more researchers who know something about it.
I hope the meeting with your oncologist went well, and wish you the best.
-
Like -
Helpful -
Hug
2 ReactionsThank you. My oncologist is actually out of town this weekend to attend the ASCO meeting in Chicago, so I will hold off on e-mailing him about "Tumor Treatment Fields."
-
Like -
Helpful -
Hug
2 ReactionsThe tumor treatment fields thing looked interesting, so I went to Dr. Google and found this, dated in February:
https://www.novocure.com/novocure-announces-last-patient-enrolled-in-pivotal-panova-3-study-of-tumor-treating-fields-in-pancreatic-cancer/
Looks like the study is closed now and was limited to patients with locally advanced pancreatic adenocarcinoma, i.e., not stage IV. Oh well.
The one I was thinking of more recently was not Panova-3, but this one:
https://clinicaltrials.gov/ct2/show/NCT04605913
I think metastatic (Stage IV) is OK, but at least one of the mets has to be on the liver? The link indicates the study is still accepting patients, but it looks like Mayo in Florida is the only participant; wouldn't work for a lot of people.
We are with you. Your story could be my story. Keeping you in my prayers.
-
Like -
Helpful -
Hug
1 ReactionThank you. Much appreciated!
-
Like -
Helpful -
Hug
2 ReactionsI’m in the same predicament you are and will also video chat with my oncologist tomorrow. I would be interested in knowing what your oncologist says and I can do the same.