Husband had Whipple surgery and chemo: He's uncomfortable

I'm about a year behind you. I'm a 74 year old guy, diagnosed Stage 1 Adenocarcinoma at head of pancreas 2 months ago, received initial Folfirinox infusion at Mayo in Rochester, followed by 2nd and 3rd infusions here in Alaska. I suspect my course of treatment (with additional 5-9 Folfirinox treatment) will be similar to yours and will be returning to Mayo for radiation (if needed) and the necessary Whipple. If you don't mind sharing some particulars.... What was your initial/highest CA19.9 level? Was your Whipple a full or modified Whipple? Was it done Endoscopically and Robotically? Who are/were your oncologists and surgeons at Mayo? Mine are Alberts and Kendall. Thanks in advance for any particulars you're willing to share. Congrats on your NED status and very low CA19.9 level. May some of us follow in your very successful footsteps. The Mayo Clinic is a wonderful place.

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I had 12 Folfirinox treatments and then 15 r=
adiation treatments with oral chemo twice a day. I started chemo in May and i=
t lasted until mid-October, then October 31st started radiation and was luck=
y enough to stay at the Hope Lodge right in Rocester (a free cancer house) f=
or three weeks while I did radiation. I finish November 18th. I flew to Cali=
fornia to celebrate Thanksgiving and an early Christmas with my son and flew=
back to MN in time to have my surgery with Dr. Truty (Kendall=E2=80=99s par=
tner) on December 6th. I was in the hospital for 8 days with no ICU. I woke w=
ith an epidural and one drain plus a feeding tube which I never needed. I ex=
perienced very little pain and eating, even in the hospital, was no problem.=
Once home it was slow going but the nurse from Truty=E2=80=99s office calle=
d and said I was trying to run a marathon instead of learning to walk. Once I=
understood what she meant, I realized how well I felt each week from the pr=
evious week instead of looking at only day by day. I never used my feeding t=
ube so they took it out on my  week visit. I flew to Florida for the wi=
nter on January 20th after the =E2=80=9Cgo ahead=E2=80=9D by Truty=E2=80=99s=
office. I have not had any problems with eating although I am still 18 poun=
ds lighter, at 5=E2=80=994=E2=80=9D i went from 132 to 114-117. Since then I=
bought new clothes as pants and shorts fell off my hips, but I am loving li=
fe and my last two scans have been NED and my CA19-9 is down to 3. I play pi=
ckleball 5-6 days a week for 2 hours. I am in Vegas with my family and walki=
ng 17,000 to 21,000 steps a day with my Grandsons. They might be killing me b=
ut I love the fact I can do it at 72. Dr. Truty is not trained in robotic as=
is Kendall, so I did not have robotic and I would prefer open anyway. I wok=
e up to a glued incision which looked healed after the first day and never b=
othered me after at all. It is still a bit numb but no problems. I hope all t=
his rambling helps alleviate any fears you might have. I realize we are all d=
ifferent in how we react and heal, but that is my story. Mayo is a miraculou=
s place and Truty and Kendall are amazing surgeons dedicated to PC. I wish y=
ou the best of luck with your journey.=E2=80=9C=
Yesterday is a memory, today is a gift, tomorrow is a dream=E2=80=9D.=E2=80=9CI am not going to die before I am dead=E2=80=9D.=
Sent from Denna=E2=80=99s iPadOn Jul 12, 2023, at 9:54 AM, Mayo Clinic Connect=
<

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I'm about a year behind you. I'm a 74 year old guy, diagnosed Stage 1 Adenocarcinoma at head of pancreas 2 months ago, received initial Folfirinox infusion at Mayo in Rochester, followed by 2nd and 3rd infusions here in Alaska. I suspect my course of treatment (with additional 5-9 Folfirinox treatment) will be similar to yours and will be returning to Mayo for radiation (if needed) and the necessary Whipple. If you don't mind sharing some particulars.... What was your initial/highest CA19.9 level? Was your Whipple a full or modified Whipple? Was it done Endoscopically and Robotically? Who are/were your oncologists and surgeons at Mayo? Mine are Alberts and Kendall. Thanks in advance for any particulars you're willing to share. Congrats on your NED status and very low CA19.9 level. May some of us follow in your very successful footsteps. The Mayo Clinic is a wonderful place.

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I get my treatment at May Clinic in Rochester, MInnesota. My Pancreatic group wanted 12 rounds of Folfirinox which I did, then 15 rounds of radiation with two oral chemo pills twice a day, then surgery. According to my team, without a Whipple, I would die. With a Whipple I had a chance of survival. I did everything the team asked. Before surgery my tumor was not even measurable it had shrunk so much and my CA19-9 marker was down to 12. My Whipple was 7 months ago yesterday, both scans at 3 months and 6 months have been clean, NED and my CA19-9 marker was down to 3. I am very pleased with the results although the road getting there was tough, I would do it all over again the exact same way. Hope this helps. Best of luck! May God look over you!

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Hi JK,
JHH is not perfect but the doctors and most nurses are A++. They are a high volume pancreatic center. They work as a team and when you get through the gates, you attend a clinic where numerous doctors look at your case and recommend treatment and an oncologist and surgeon is assigned to your case. There are several surgical teams that focus specifically on the Whipple. I am now 10 weeks past surgery. Chemo was cancelled this week bc of low WBC. If you are thinking of JHH, I would contact them to get in the queue for the pancreatic clinic.

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@dgoinvestments : May I ask whether chemo + radiation has made you NED, or whether you also needed, or will need, surgery?

I've had six rounds of Folfirinox, will have at least two more, and am waiting for my onc to discuss my case at his dept.'s next weekly conference. It's not yet clear whether my cancer has metastasized (there are nodules on my lungs, but a CT scan three days ago indicate no change in their size, which is good BUT not conclusive); if it has, then my onc. doesn't want me to have surgery.

For now, the options seem to be radiation, radiation followed by surgery, surgery, or more chemo. So far, the chemo seems not to have shrunk my tumor, tho it has lowered my CA19-9, from 387 to 163. So I'm wondering whether radiation + oral chemo can zap the tumor and get one to a state of NED. Thanks for your time and help; wishing you well.

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@stephenkogler : Thanks so much for this post. I live in Maryland, and if you're comfortable sharing the name of your oncologist, I'd be grateful.

I've been receiving treatment at a hospital that, according to US News, isn't nationally ranked in any department. This makes me nervous. I'm at this hospital bc my PCP was there and for other reasons (too complicated to explain), but as I await word next week about what happens next -- I've had six rounds of Folfirinox, and it's not clear whether I'm a candidate for surgery -- I'm nervous. I want to live!

My onc is bright and he has very good academic credentials, but it's hard not to be swayed by the HOPKINS name. (I shdn't be, bc I earned my grad degree there in a highly rated department that was, unfortunately, garbage for a few years, including mine, but I suspect that JHH is more stable than a JHU academic dept.)

Thank you, and best wishes.

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Yes, your comments are helpful. Since my earlier post I've had another ERCP, stent replacement, as well as an EUS, biopsies, CT Angiogram, and exploratory laparoscopy with peritoneal wash. (Like you, my initial stent relieved most of my symptoms in about a week.) I'm diagnosed as Adenocarcinoma, Stage 1B. The tumor is not entangled badly with the nearby major vein and artery. Adjacent nodes are fine and there is no indication of metastasis. Intra-abdominal scrapings during peritoneal wash were negative. My 3rd Fulfirinox infusion happens in a few days. My CA 19.9 went from 316 to 641, then down to 321 10 days ago. Following 6 or 10 more Folfurinox infusions I anticipate having the Whipple, with a possibility of 3-4 weeks of radiotherapy prior to surgery if needed.

Sounds like we are on similar paths though the course of our treatments are not firm, but is seems like constant change is par for the course when it comes to pancan. Thanks for sharing. All the best to you as well.

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Oxaliplatin is made by different manufacturers and not affected by the supplier that the FDA did a surprise inspection on and shut down production of a different platin agent as a result of violations. I believe Sanofi has the rights to and is the distributor of the Eloxatin brand of Oxaliplatin, I haven’t found mention of this brand listed as in short supply.

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I feel your husband’s pain. I’ve been treated at Johns Hopkins Hospital in Baltimore, Maryland. Diagnosed with pancreatic cancer in October 2022. The recommendation was for eight rounds a Folfirinox. When in fact, they did nine prior to the Whipple surgery and then they would continue the Folfirinox for four sessions. After surgery. I had the Whipple on April 24 and the cancer is stage two because 2 of the 14 lymph nodes were cancerous. I just had my 10th chemo yesterday and I’m sorry to say that it was the absolute hardest of all. The Irinotecan just about killed me. And that was even with two shots of Atropeen at the infusion center. Each of our journeys is so different. We have to be our own advocate, so even though our doctors are busy, we should be asking them for help when needed and I found it. It might take 48 hours to get an answer but most doctors I have found a JHH I’ve been quite empathetic extremely helpful. Good luck. We are all in this together, including those of you that are our wonderful caregivers at home.

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