@waltsocal ,
It's always good to "get everything in order" but not time to give up yet!!!
I had been meaning to get a will, living will, trust and all sorts of estate planning in order for decades before discovering I had cancer, but didn't get around to it until after the diagnosis. Finally got all that taken care of, but haven't needed it yet, thankfully! For others, it's a lesson to do sooner rather than later. Biggest disadvantage of my delay so far was a lockout from certain life insurance policies and other benefits, but it's definitely one thing I wish I hadn't been preoccupied with while dealing with my bigger cancer issues. Another piece of that lesson is how much complication that removes from your survivors. My dad had all of his docs in order (including Will and Trust) but lawyers still found some way to tie it up in probate court, dragging it out and costing us money.
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All that aside... on the cancer front, not everyone is the same, as you know. Although Folfirinox is supposed to be the wonder drug with Gemcitabine reserved for the feeble, my response to Gemcitabine + Abraxane + Cisplatin after a Stage-4 recurrence (and ATM mutation) has been far better than it was to my pre-Whipple Folfirinox. Although I've been Stage-4 for a full year now, it's considered "stable disease" (knock on wood) for now.
I'm not really experiencing any effects of cancer now as far as I can tell, only some fatigue, low blood counts, neuropathy and hair loss after a year on the GAC chemo. I think I could do this a good bit longer with a blood transfusion, as long as the disease remains at bay, but aside from developing drug resistance, the chemo wear and tear on your body sometimes limits how long you can remain on it.
Trials are a lot harder to get into than I imagined, but are definitely the next logical step. Some depend on any mutations you have, others depend on treatments you have or have not had, all depend on how often you have to travel to the trial site, and so on. I'm still trying to cross that bridge, and will post updates here when/if I do.
For now, just take hope that gemcitabine (maybe combined with some other drugs) will buy you time to explore all that.
Thanks for the feedback on your treatment. I met with my oncologist today. I have a cancerous lesion on my spine that they will treat with radiation. Of course I have to have a biopsy first since the CT and MRI were not conclusive enough. Although they are sure that the radiation treatment(s) will wipe out the lesion on my T4 vertebral, they're pretty sure the cancer has gone to other areas of my body. (CA19 at 400 now).
So, I will be starting Gemcitabine+Abraxane in March. One treatment per week for 3 weeks and then a week off. And then start all over.
A few questions:
1. How bad are the side effects compared to Folfirinox? (which I had pre-whipple)
2. How long before the G+A was no longer effective?
3. Did they monitor this with CT and CA19 results?
4. What is your definition of "Stable"?
5. How debilitating was it for you - what helped you to overcome fatigue etc.
Thank you again for your feedback and insight.
The oncologist said that if I can tolerate the chemo, I may have "a year or so".....