Stage IV

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.

Thank you so much for this information. Very helpful. Just one question...are you on the Olanzapine all the time? This is the most recent med they prescribed him and they only gave him like a 4 day supply. Are you also on Folfirinox? Thank you in advance.

So very helpful. Thank you so much. We will be asking all these questions and whatever updates I have, I will be sure to post here. Can I ask...at diagnosis, what stage were you? I'm hoping my brother continues to do as he has with the folfirinox and finds foods that he can tolerate while having the nausea. Or hopefully, they can modify his meds to cause less of this.

Thank you for all this information. How are you handling things so far? Who else have you reached out to? I have asked him to start a notebook at all his appointments. He's a guy so not sure if he has lol. I, however have been killing myself doing research and trying to find alternatives. Listening to podcasts all day as well. Now I have heard modified Folfirinox before. What does the modified mean exactly? And yes he has been fortunate so far. Nausea for 3 days and diarrhea only twice. Prior to infusion he received anti nausea and fluids intravenously. But when you say prep meds....I think they have only been administering Zofran and Compazine. From where I work. I know a lot of patients cannot handle Compazine. He has no oral meds prior to chemo yet that I know of. And you are welcome. If you look up this dual thermal it sounds so promising but I'm not sure who offers it. If you find out anything...please let me know.

So very helpful. Thank you so much. We will be asking all these questions and whatever updates I have, I will be sure to post here. Can I ask...at diagnosis, what stage were you? I'm hoping my brother continues to do as he has with the folfirinox and finds foods that he can tolerate while having the nausea. Or hopefully, they can modify his meds to cause less of this.

Mayo Rochester had me do 8 rounds of fulfirinox then 3 weeks of radiation, the higher intensity vs the lower 5 weeks. it was my choice. I chose to do the three weeks. 6 weeks later I had the whipple. The tumor was dead when he went in for the whipple. It was all done laparoscopically. It was amazing. 10 months later I am doing well. Back doing most all the things I normally did like ride my horse and walk or run 1-2 miles a day. My issues with diarrhea have subsided I think I have it under control if I eat small meals every 2-3 hours and take an Imodium AD and my creon as prescribed. Hope this all helps. I don’t know why some DrS do the radiation or chemo after the Whipple. Mine was all before surgery.
Best of luck to you!

nvan,

Congratulations!

How do you monitor for recurrence or mets to other areas? CA 19-9 testing, and how often?

Repeat CT and PET scans?

Was any maintenance chemo discussed?

nvan,

Congratulations!

How do you monitor for recurrence or mets to other areas? CA 19-9 testing, and how often?

Repeat CT and PET scans?

Was any maintenance chemo discussed?