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Pancreatic Cancer Group: Introduce yourself and connect with others
Pancreatic Cancer | Last Active: 7 hours ago | Replies (1291)Comment receiving replies
Markymarkfl - THANK YOU - so much !!!
Great feedback and encouragement for where I am right now.
Wishing you the very best on your rough road. I can only imagine how tough it is to keep up work along with your chemo regiment. I can understand your reluctance to stop the abraxane. I'm hoping to find the magic mix that will keep me around longer - if I'm not bedridden all the time.
With your every two weeks of chemo, does it give you some recovery time that you can actual get around ok?
1. I'm concerned that my oncologist wants me to do three weeks on for G+A and then one week off before starting again. Seems like I would always be fatigued.
2. Is the cisplatin something specific to your cancer? How did they decide you needed it?
3. Not sure why my oncologist won't do a PET scan at this point. You would think he would want a baseline at this point with my high CA19 along with the cancerous lesion on my T3 vertebrae. How do you become more assertive about requesting the test?
Replies to "Markymarkfl - THANK YOU - so much !!! Great feedback and encouragement for where I am..."
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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.