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Stage IV

Pancreatic Cancer | Last Active: Aug 18, 2023 | Replies (29)

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@gardenlady1116

I got an initial treatment with Folfirinox. Landed in the hospital on the 3rd day, not with nausea or vomiting just extreme weakness. My oncologist and I discussed alternatives. I have BRCA1 and was aware that platinum drugs had specific benefit. I went with Oxyplatin and 5-FU infusion pump. I had three treatments with chemo before my initial consultation with Dr. David Kelsen at Memorial Sloan Kettering Cancer hospital. He advised that they usually recommend oxyplatinin and gemcitabine as an optimal combination for BRCA1 but if the 5-FU was effective, we should continue. The repeat CT angiogram showed stabilization and the tumor was slightly smaller, CA 19-9 came down from 1750 to the 500s. I was seen again after the 8th treatment and advised that a vein repair would be needed. Since I was doing well with the chemo, we went with another 3 cycles. I was developing neuropathy and then on the 11th treatment, had an allergic reaction with the oxy. 5 FU alone was continued. I followed up with the surgeon at MSKCC end of May and he thought things were optimal. Had my Whipple's on the 21st June and am waiting for pathology.

Other than my first treatment, things went OK. I got Aloxi, Emend and dexamethasone premedication. At the end of the second day of the 5-FU infusion, I would feel just a little queasy and took Compazine since Zofran didn't do much of anything for me, I sometimes took another couple of doses of Compazine. Never vomited once. For the 5-FU I asked to continue with the Emend. I took with my chemo for ovarian cancer in 2005 and never had difficulty with nausea. I got Emend and dexamethasone. The initial chemo in 2001 after breast cancer surgery. Adriamycin and Cytoxan. I had severe nausea and was hospitalized. Zofran did nothing but dexamethasone worked wonders. I took it before my subsequent treatments and did fine. 2001 was before the days of Emend and Aloxi.

Worst symptom was the fatigue with all three of my cancers has been fatigue with chemo, but I did learn to manage with it and tried to get ready for the next cycle of chemo when I was at my best. Got the lawn mowed, did the groceries, laundry etc. I live alone and need to manage for myself. The neuropathy is bothersome, I take gabapentin and don't have pain but function in my hands is reduced and my balance is not as good.

My sister also has BRCA!, also on her 3rd cancer. Her doctor couldn't see fit to give her a good anti nausea regimen. I sent a copy of my chemo record. She is unfortunately being treated at an institution that is great with research (University of Michigan) but pathetic at treating patients with compassion and respect. I feel most fortunate for being treated with compassion and respect as well as excellence. I don't understand doctors who can't seem to get it together and provide optimal symptom relief.

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You are a wonder to have faced three cancers with such determination and courage. Thank you for sharing your experience and knowledge. I will pray for a speedy recovery from your recent surgery. I too am so sorry for your sister and so many others who do not have compassionate care.
God Bless

Thank you so much for all of this. You are amazing. Surviving cancer as many times as you have. Praying for a quick recovery. Can I ask who your surgeon was at MSK? I hope you are feeling stronger everyday.