When to "stop"

Whilted,

My comments follow the loss of my sister to pc, and are not meant to be advice, but just musing about what might have been.

She presented with jaundice while recovering from back surgery. Confirmed on the head by local care. At Mayo within two weeks. Neoadjuvant oncology approach with intent for laparoscopic Whipple following. Month off prior to start of radiation. Presented with ascites near end of radiation - likely liver and omentum involvement. Month off prior to surgery, but advises worsened and no resection. Could no longer find the pancreatic tumor on scans. Returned home for more chemo, but disease progressed and she was too weak to continue following restart.

I consider what might have been ...
- did the extended back surgery recovery mask earlier symptoms?
- on initial detection might have immediately started chemo
- instead of time between CHT and CRT, why not continue with CHT only
- if physically able, why not continue with chemo for years?
- if can't find tumor, or chemo and radiation continue to shrink, why not continue?
- how about adjuvant instead ... immediate Whipple then CHT?

And, sure, I know every case is different.

Should we have gotten another world class assessment? Probably, but her case was well understood and prices flow consistent with best information. But, since everyone is different, aren't there alternatives?

Sorry, turned into rambling thoughts.

What I have read is that pancreatic cancer tends to be resistant to chemotherapy drugs, and from the many stories I have been reading that microscopic disease seems to only be detected at the time when a laparoscopy is done. One patient reported being scheduled for Whipple, cancelled when the laparoscopy showed microtumors in the abdomen. This of course was crushing since everything seemed to be going well. I keep this in mind when I am told the tumor is shrinking and the CA 19-9 has come down almost into the normal range. I too have been considering a one week break from my schedule because my Mom's, age 95, sister age 93 just died and I know my Mom would like to have company. I don't feel it's safe to travel, don't want to risk COVID. Also, now that the cancer is shrinking, I feel I should really just stay on top of the chemo. I feel a little left out of life these days due to physical limitations. I can enjoy life anyway, but do regret not feeling like traveling at this time.

Her immune system could be a problem if she is traveling and has had recent treatment with drugs that strongly suppress the immune system. The radiation oncologist could be helpful in giving information about the duration of the effects of her radiation treatment. Might be more "durable" than chemo so a break in treatment might have less effect than if chemo was the only treatment. I would like to travel to see family, my Mom is 95, but I am concerned about the optimal timing of a trip. I have had a decrease in the size of the tumor after 8 sessions, the surgeon did not think I was a surgical candidate after the most recent scan and suggested 4 more sessions of chemo and reevaluate.

@mayoconnectuser1 I have the same thought process -- all the what ifs flood my mind at night and keep me wondering whether whatever decision we make is the right one. Definitely not a healthy way to go about my day, as no one has the answer, but it is so difficult to suppress these thoughts.

@gardenlady1116 You and my mom seem to respond to chemo very well. The continued drops in CA 19-9 for you seem very promising. I had all the reassurance possible after we headed over to Mayo. They did a CT scan, a PET/MRI scan, a laparoscopy, and even a peritoneal washing. PET/MRI scan did not light up, laparoscopy showed no evidence of metastatic disease, and the peritoneal washing came back with CA 19-9 less 5 and CEA less than 0.5. I do think we need to live our lives, as long as we're physically and mentally capable of doing so, so I'll ask her oncologist in two weeks and see what he thinks. I hope the chemo sessions are going well for you.

Check out “magnetic resonance guided adaptive radiotherapy.” I think this is the only worthwhile radiation treatment for locally advanced, but inoperable pancreatic cancer. Only certain hospitals offer this procedure, so check what is available in your state. This kind of radiation can be curative. I believe all other radiation treatments are palliative.

After many sessions of chemo, my tumors shrank considerably and as the pancreatitis began to resolve, I felt well enough to travel. I scheduled a second oncology opinion with John Hopkins to discuss treatment since they are a Pancreatic Cancer center. They actually encouraged me to take occasional breaks when scans show stable results if I had family plans. They claim they saw no difference when chemo breaks were added or when they reduced chemo meds for improved tolerance.

Has anyone else done this?

I’ve been on chemo for two years and doing great with the treatments. I stoped my chemo for 3 weeks last year to take a 10 day vacation. I usually stop two weeks before so I don’t feel worn down. This year I’m taking a 3 week vacation so I will be about five weeks without chemo treatments. I always feel better and it gives your body a break. I just got great news last week from my MRI when my doctor confirmed what radiologist said that there was no discretely measurable mass identified.
I was so relieved! I will still be doing chemo before and after vacation.

@robee That is good information. I will definitely ask her oncologist and see what he thinks, but I just want to make sure my mom has the best outcome. If that means 1-2 more chemo sessions before our trip, my mom will definitely be up for it.

@thawk32 This makes me very relieved. Have you had radiation + chemo pills done before?

I haven’t done Radiation or Chemo pill. I’ve done 42 rounds of chemo over two years.

Hi Robee,
Good on you! What was your stage? Was it resectable? How many sessions of chemo? Was it the Filfirinox? Did you support that chemo.
I have been very sick and the oncologist has decide to put me on Gemcitabine.
I wonder if it will give good results at the Filfirinox...