Husband had Whipple surgery and chemo: He's uncomfortable

I just had my first round of Folfirinox yesterday (Friday, June 9). What type of hand/foot lotion was recommended? I saw the recommendation for lotion but missed what specific type. Thanks.

No side effects from radiation except the oral chemo pills. I was nauseous for all my chemo treatments plus the oral ones. Some people told me I might have skin on hands and feet crack or peel and to use a special lotion they recommended and I bought, but I did not have any burning, cracking or peeling. I did have a bit of dry mouth but I sucked on lifesavers or other hard candy or drank water all the time and I was fine. I found radiation easy and played pickleball 2-3 times a week when I was at Mayo in Rochester Good luck to you!

I’m on the same plan. Just finish chemo 12 rounds and I’ll going to radiation. What side effects did you have from the radiation?

This will be his last chemo session. He's doing well, has appt at MSK with oncologist to see what she recommends, if radiation is needed.

@joanalc, how are you and your husband doing?

I was stage 1 but went through 12 rounds of folfirinox, then 15 rounds of radiation with oral chemo, then my Whipple just last December. Obviously everyone is different, but it does not sound excessive to me. I would do anything not to have a reoccurrence.

Thank you for sharing your story

@joanalc , I'm not a doctor, so I couldn't tell you if that's appropriate or excessive, but it does sound aggressive, which might be good, as long as he's in good enough shape to tolerate it.

How long has it been since your husband's Whipple and last CT scan? Are you also testing CA19-9 and ctDNA (Signatera or similar) regularly?

What chemo meds was he on for 6 months after Whipple? What pills are they putting him on now, and why? Did he have any genetic mutations (KRAS, BRCA, ATM, etc) they're trying to target with the new pills?

What are they targeting with the radiation, and why?

The radiation is something I would definitely question, because they have to have something to aim it at. It sounds to me like the oncologist saw something on the CT scan that was concerning but not yet definitive, and wants to exercise every precaution possible.

FWIW, I also had a successful Whipple at Stage-2 after 6 months of Folfirinox, with clean scans, ctDNA tests, and good CA19-9 for 3 months afterward. (No adjuvant chemo or radiation after the Whipple)

But at the 4th month, MRI spotted a new 2 cm tumor where my Whipple was done, even though the other tests and another biopsy were still all normal. PC is a sneaky bastard, to say the least. By the time we did another MRI 6 weeks later, all the blood tests and MRI said the cancer was definitely back, and had spread as well. Stage-4 for me now. 🙁

Based on that experience, I wish I had done some kind of treatment after the Whipple, despite being NED. There's a term "MRD" (Minimal Residual Disease or Microscopic Residual Disease, depending on which papers and websites you read) that describes remaining cancer that is undetectable but can definitely come back and multiply. As @stageivsurvivor will attest, sometimes you have to beat the disease into submission and beyond.

I wish you and your husband well with the treatment, but it sounds like your oncologist could do a little better with the communication. Answers to the questions above would help shed some light.

My husband underwent Whipple surgery(stage 2b) successfully. He is now completing 6 months of chemo. His last cat scan was fine. His oncologist is now recommending 6 more weeks of radiation (5 days per week) combined with chemo pills. Does this sound appropriate or excessive?

Hi Rod54. We may bump into one another here at Mayo - Rochester. I'm likely Stage Ia as well given the relatively small size of my single tumor, though I'm awaiting EUS biopsy to confirm the almost certain diagnosis. Pancreatic C-T Angiogram results tomorrow will determine extent of venous and arterial entanglement with the tumor and whether or not the tumor is resectable/operable. According to the two gastroenterologists who evaluated me earlier today it is probable I will have 3 months of chemotherapy, followed by surgery, followed by additional chemotherapy. Questions for you... Over how long a period of time will your 8 chemotherapy treatments last? Have you had your first chemo treatment yet? How soon after your final consult does/did your initial chemo treatment begin? Thanks in advance. - wjk