You're very welcome. Wish I had better answers, but I'll give you what I've got:
1) If I get chemo on a Friday, the fatigue usually lets up by Monday evening, so I have 10 good days before the next treatment. You would get 3 good days between 1st-2nd and 2nd-3rd treatments, then 10 good days between 3rd and 4th, etc... Maybe less fatigue for you without the cisplatin. Maybe less fatigue if you're also retired. 😉 Consider pestering them about a blood transfusion if necessary.
2) I've heard several oncs say people with mutations of the ATM gene do well with a platinum-based therapy. I don't recall seeing the paper, but my current onc cited Eileen O'Reilly from MSKCC in explaining his choice of my regimen. They wouldn't mix Oxaliplatin with Gemcitabine (untested and/or double serious risk of neuropathy), so GAC is what I got.
3) I'm not sure what's up with some doctors and their thoughts on PET scans. I've heard the radioactive sugar (FDG?) tracer is very expensive. I've heard docs say the PET is generally just used after finding a single tumor (at initial diagnosis) to get a "global" look at the rest of the body for mets. One doc told me they can see all the "attributes" distinguishing live tumors from necrotic tissue on their MRIs, and once they're only looking in a small region (e.g. abdomen) for tumors, they can actually see finer details on MRI than they can on PET. But, there are machines that combine the technology (PET+MRI or PET+CT) where they can get the benefits of both in one scan.
I have not had a PET scan since my initial diagnosis 2.5 years ago, despite asking several times. I might get one this spring if things work out, but it's iffy. My big beef is that I requested a PET scan 1.5 years ago after my recurrence was first spotted on MRI. They were not 100% sure the mass was cancer, so they immediately followed up with EUS biopsy, which was negative and diagnosed as chronic pancreatitis. The outcome of that was to wait 6 weeks and redo an MRI, which (along with CA19-9 and positive Signatera) convinced them it was indeed a recurrence of the cancer.
The bummer is that I think an immediate PET scan would have seen radioactive sugar uptake in the tumor and overruled the bad EUS biopsy soon enough for me to have surgery or start chemo before the mets occurred. 🙁
If I could rewind time, I would have been a LOT more assertive about getting the PET scan and paying for it myself if insurance didn't.
Thanks again markymarkfl.
Few more questions popped up from the "home team"...LOL
1. May I ask why they did so many rounds (12) of chemo pre-Whipple for you and what was your
original CA-19 before chemo? I did 5 rounds to shrink the tumor as it was too close to the superior mesenteric artery. My CA-19 was 246 at its highest before surgery and dropped to 38 after chemo and before surgery. My first "check" now after surgery and recovery; CA19 is 400 now w/out the tumor.
2. How much has your weight changed, pre-Whipple to post Whipple to last 12 months while you've been on your latest chemo.
3. How is your “quality of life” on chemo for last 12 months versus pre-Whipple? (exercise, travel, work, etc.) I find even now without chemo for months I get tired easily and tend to move much slower. I use to bike, gym, swim before - now I'm only doing long walks and some light weights.
4. I tolerated Folfirinox very well pre-Whipple, however, after the surgery/complications when I
was finally ready and thought I was strong enough for chemo (4 months after surgery) I ended
up back in the hospital after only one round (dehydration due to side effects). Although
everyone says G+A is more tolerable, I wonder if I will be able to tolerate it, especially long
term? (for the next year - at 3 weeks on and one week off)
5. Are you aware of any PANCAN patient having the metastasis spread to the spine and their
experience/outcome? (My latest CT and MRI this month shows no growths in the abdominal area - although a couple of lymph nodes seem swollen)
Thank you once again.