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
look for clinical trials.Sometimes thats our only hope other than a miracle intervention.I'm followong both.I found a clinical trial for my gene mutation that I;m going to be screened for this month.I have a good chance of getting in because its specific to my gene mutation.remember ,Its not up to the Dr's when we leave this life.
-
Like -
Helpful -
Hug
2 ReactionsWhat treatment have you had since being diagnosed?
To answer the 2 questions --
I have been offered a clinical trial but I do not have the HLA type that is needed to be eligible.
My treatment has been gemcitabine and abraxane with many postponements and reductions in dosage to keep my neutrophil and platelet counts in ranges that my 2 different oncologists have assessed as permissible. In other words I have had a number of Chemo infusions now when I had subnormal blood counts. None of these counts were low enough to put me in danger of spontaneous bleeding or increase my chances of infection. They were regarded more as signs that my "elderly" body (73-74) was not responding well to Chemotherapy.
-
Like -
Helpful -
Hug
1 ReactionAsk your oncologist about Floforinox. It’s a different chemotherapy. See if oncologist thinks it’s an option for you.
Call Pancreatic Cancer Organization (they are in California) - ask them about clinical trials - they keep a master list and will send you them via email.
Hope this helps you.
Thanks for the suggestion.
My oncologist did recommend today that I should switch to a different 2-drug regimen. One is 5-fluoruracil, to be delivered via the port I already have. The other involves an infusion via a pump that should last for 46 hours, and will require us to learn how to disconnect it. I am now in search of an over the shoulder fanny pack of some sort to keep the pump in place when I need to be connected. That drug is Irinotecan (Liposomal) brand name Onivyde.
If anyone has any experience with this 2-drug regimen, I would be glad to hear about it.
-
Like -
Helpful -
Hug
1 ReactionAsk about proton radiation
5 day
-
Like -
Helpful -
Hug
1 ReactionI don't have personal experience, but I believe you are getting the combo-drug Folfirinox minus the Oxaliplatin (which is the chemotherapy that causes a lot of neuropathy side-effects.).
Folfirinox is made of 4 different components: Folinic Acid, Fluorouracil (also called 5FU), Irinotecan Hydrochloride, and Oxaliplatin.
Folfirinox is a standard treatment for pancreatic cancer. It is generally not given to people over 70, although my understanding is that the reason for this is perhaps somewhat arbitrary. It has a slightly better record than gemcitabine and abraxane on average.
You might be right. My doc did mention Oxaliplatin and I assume is avoiding it since I already have numb feet and shins following the course of gemcitabine-abraxane I've received. I don't recall him mentioning Folinic Acid as a component, but will check to see if the consent form does. I am over 70, but he is supportive of my desire to keep going.
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.
-
Like -
Helpful -
Hug
1 ReactionDisconnecting the pump is only if we want to do so, and we do, given the headache of driving in and out of town. My husband, who is not medical but very safety conscious and good at technical matters, believes he will be able to handle the disconnects.
My oncologist did mention the possibility of GI upset, is well acquainted with my own history of diarrhea. His professional opinion was that it was a less than 1% risk. Considering that we seem to be running out of options at this point, I consented to give it a try.
-
Like -
Helpful -
Hug
1 Reaction