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Relationships with our doctors
Today I told my oncologist I was a 10-year survivor — it made her day. It made me think about our relationships with our doctors.
Ideal is mutual respect, but we have very limited time to establish rapport. At first I was very passive as everything was so new. Later I asked about adding various therapies and when she realized I was engaged she offered to research some issues. We can show our appreciation with good reviews in and out of the healthcare institution.
She gave me a prescription for off-label use of paricalcitol, a synthetic form of vitamin D, that some prominent oncologists were advocating in 2016: it was believed to help chemo agents to breach the stroma that surround pancreatic cancer cells. I don’t know if it helped and I don’t hear about it now.
My oncologist is not a specialist in pancreatic cancer and I think this is often the case — so we wonder about getting more expert care. I got some second opinions. But one thing to keep in mind: many things we might want, besides prescriptions or tests, can require the support of a physician. In my case, I wanted to challenge medical decisions made by my HMO (Kaiser): they had me scheduled for radiation and surgery after my neoadjuvant chemo. And the surgery was at a low volume site. I wanted to go to a Kaiser surgeon 500 miles away who performed the Whipple often. My oncologist supported my request, despite resistance from some colleagues; without her support my request would have been denied.
Timing the surgery was pivotal. A few institutions reviewed my scans and said I was ready for surgery without any radiation. Later my oncologist said I might have had metastasis if I had waited for the radiation.
We have to be resourceful: I went for a colonoscopy and took the opportunity to ask the gastroenterologist about post-Whipple issues; he ordered about ten tests and one showed I was not taking enough Creon.
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know navigating care within an HMO can sometimes require patience and persistence, and I want to acknowledge how well you’ve done advocating for yourself. Because of your tenacity, you were able to secure excellent care.
Staying engaged, asking thoughtful questions, and remaining proactive truly matters.
For perspective, my own treatment included gemcitabine, Abraxane, and cisplatin, along with high doses of vitamin D. Surgery was not an option for me, so chemotherapy became my path. Today I am seven years out.
There is real strength in staying involved in your care and continuing forward step by step. You are doing exactly that.
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3 ReactionsTen years is such a beautiful milestone. Your strength and determination have shown what it truly means to advocate for yourself while navigating something as overwhelming as pancreatic cancer. Your news brings so much hope and joy.
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4 Reactions@mcharlesfrancis
Congrats to you! 7 years on GAV!! How did you avoid the neuropathy that often results from the abraxane?
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1 ReactionAs a new patient, I want to share something important. I did develop neuropathy during treatment with Abraxane, and it can be one of the more challenging side effects.
Some patients use cold therapy (icing hands and feet during infusion). Cooling may restrict blood flow to the extremities, which can reduce the amount of chemotherapy reaching the peripheral nerves and may help lower the risk or severity of neuropathy.
It’s not a guarantee, and it’s important to discuss it with your oncology team first, but if I were starting again, I would seriously consider using cold therapy from the beginning.
Neuropathy is much easier to try to prevent than to reverse.
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1 Reaction@mcharlesfrancis That is really good advice. Often patients do not realize what neuropathy can do. Great recommendation and makes total sense.
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1 Reaction@mcharlesfrancis
Thank you for your kind words.
When I went back on chemo after my Whipple, I asked for capecitabine because in 2016 there was news that it had been very successful in a trial in Europe. Be careful what you wish for! I gave up capecitabine in about two weeks because I could barely walk due to the neuropathy. I continued with gemcitabine alone for about 6 months. I tolerated abraxane very well, and my 4 months of neoadjuvant chemo with gemcitabine and abraxane brought my CA 19-9 down from about 1300 to 20.
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