Whipple procedure and follow up chemo

Posted by dakotarunner @dakotarunner, Apr 4, 2019

I had the Whipple procedure done at Mayo 2/8/19 and got out of hospital on 2/19. Had to go back to my local hospital a week later for dehydration pain and nausea, and was there for a week. Just had follow up at Mayo 4/1, and the surgical crew thought I was doing well. I can eat, and have to limit myself at meals, as I tend to want to eat too much.I lost 40 pounds, and still feel super weak and get fatigued easily. Mayo oncology want me to start chemo at 2 months out, and I have an appointment with a local oncolog4/10. My question is am I smart to be looking at chemo when I feel so worn out. I see chemo recommendation for starting at 8 to 12 weeks after surgery. Also, am wondering what chemo course to take. Mayo liked the Flofirinox treatment.. I was tabbed at Stage II after the Whipple. They did the normal resection, but also resection a section of my transverse colon that appeared to be cancerous.
the overall diagnosis was Pancreatic cancer. I would appreciate any input. Thank you in advance

@moo1

My husband celebrated his one year Whipple surgery in February. He had a “rarest of rare tumors”, no spread, but no available prognosis since
follow up treatment is unknown for his bizarre tumor cells. He is now taking Creon enzymes to help with pain after eating, but he still suffers from unexpected diarrhea occasionally. Very disconcerting when you are driving or in a social situation. Do you or others have the same problem?

Jump to this post

@moo1 I had my Whipple in June of 2014. I have been on Creon since that time. I take 2 capsules with each meal and 1 with my bedtime snack. Very seldom do I eat anything between meals. For me, the only time I have problems is when I forget to take my Creon (typically at bedtime) or when we have a family gathering and I snack on food all day (basically, i eat more food than I take Creon for). Even then, it is a couple of days later before I have problems. There are several factors that affect how much Creon you need take. Your husband may want to talk to his doctor or contact PanCAN (Pancreatic Cancer Action Network) for advice.

REPLY

Marvin, thanks for the comeback! Formerly, my husband was a big carb/sugar eater, so he is having difficulty losing his desire for those sometimes
difficult to resist foods. He takes 3 Creon caps with meals and two with snacks. He’s hooked on Sweet tea, since his medical team is in the South.
Weight is no longer a problem since he’s lost 30 pounds and is having trouble keeping his weight up! I’m so pleased to know that you had your
Whipple in 2014 and your still able to respond to me in my caretaker role!

REPLY
@moo1

Marvin, thanks for the comeback! Formerly, my husband was a big carb/sugar eater, so he is having difficulty losing his desire for those sometimes
difficult to resist foods. He takes 3 Creon caps with meals and two with snacks. He’s hooked on Sweet tea, since his medical team is in the South.
Weight is no longer a problem since he’s lost 30 pounds and is having trouble keeping his weight up! I’m so pleased to know that you had your
Whipple in 2014 and your still able to respond to me in my caretaker role!

Jump to this post

@moo1 I was diagnosed with Type II diabetes 5 years before I had pancreatic cancer so I was used to watching my carb/sugar intake. In my Whipple, the surgeon removed most of my pancreas and did not reattach what was left to my digestive system. That means I am now a Type I diabetic. My diabetes nurse said that gives me more flexibility – I can eat whatever I want and just give myself more insulin to cover what I eat. Even though that may be true, I still try to watch very carefully what and how much I eat.

REPLY

What were u r symptoms of pancreatic cancer

REPLY

Marvin and Dakota, please stay well, my prayers are with you both!

REPLY
@dakotarunner

I had the Whipple on 2/8/19. I can eat, even much more than I should considering the "small potions" instructions I received after surgery. I got into trouble after I got hoe as I was on a high protein diet, and my stomach could not yet handle it. I ended up back in the local hospital for a week. I am not taking any enzymes, as I had a follow up check up at Mayo Rochester on 4/1, and the experts said I was doing well, and did not need the at that point. I lost of 40 pounds before and after surgery. I have gained back 4+ lbs. I do not know if I will ever get back to 204, but will settle for 185. Went down 4 inches on waist size, so had no jeans to wear. Most of my shirts are XL, but luckily, some are larges.
Now and then I may have some pain after eating, especially if I east too much. Had a small problem with diarrhea, earlier this week, but took some Kaopectate, and it took care of the problem. I start Fiofirinox chemo on 4/22, so I am pretty sure diarrhea and I will be meeting again for 6 months. Oncologist says she can help with it. Best to you and your husband. It is a difficult journey that we are on, but one must stay positive, which is not an easy thing to do.

Jump to this post

Hey @dakotarunner, just checking in. I think you just started chemo a few days ago and I was thinking about you.

REPLY

Hello Colleen. Yes, 1st chemo was 4/22, Folfirinox. Was vomiting by 6 that evening, and into next day. Got couple of bags of saline, some Zofran and Atavin on the 23rd. It helped a bunch. Got pump unhooked the 24th, and got 2 bags saline, Zofrna and Atavin, along with iron thru port that day also. I imagine they will play with dosage, nauseau meds with next chemo on 4/6. The iron really makes a quick difference in fatigue and energy level. Little tired the last couple of days, but I tend to push myself pretty hard. Best thing is I can eat like a horse on most days. I am very positive about chemo. There will be bad days, but there were eight weeks of bad days after the Whipple. Love this site. Thank you. Bill Kennedy

REPLY

I had the whipple at Mayo April 30, 2018. I first did the floforinox, but could only do 5 treatments. Then the whipple. After healing for 8 weeks I did radiation. They wanted me to do oral chemo with it, but I could not tolerate it. I had five weeks of radiation. After healing, they wanted me t o double dose on chemo, but I could only do single doses. My blood counts were low and I only did five of nine. But my scans hav all been clear since then. List 70 pounds total. Putting weight back on us a struggle, but it’s getting there. I still do medicinal marijuana and this helps. Moving and exercise is also very helpful. I eat lots of whole grains, fruits and vegetables. I try to get as much organic as possible. Good luck! Also try the shanti protein bars for snacks! Not much sugar and like add with antioxidants. I also do acupuncturist nature, which many medical facilities have found to be useful. And creon is taken many times during the day….

REPLY
@dianamiracle

I had the whipple at Mayo April 30, 2018. I first did the floforinox, but could only do 5 treatments. Then the whipple. After healing for 8 weeks I did radiation. They wanted me to do oral chemo with it, but I could not tolerate it. I had five weeks of radiation. After healing, they wanted me t o double dose on chemo, but I could only do single doses. My blood counts were low and I only did five of nine. But my scans hav all been clear since then. List 70 pounds total. Putting weight back on us a struggle, but it’s getting there. I still do medicinal marijuana and this helps. Moving and exercise is also very helpful. I eat lots of whole grains, fruits and vegetables. I try to get as much organic as possible. Good luck! Also try the shanti protein bars for snacks! Not much sugar and like add with antioxidants. I also do acupuncturist nature, which many medical facilities have found to be useful. And creon is taken many times during the day….

Jump to this post

Hi @dianamiracle, How are you doing with gaining back the weight? What helps?

REPLY
@colleenyoung

Hi @dianamiracle, How are you doing with gaining back the weight? What helps?

Jump to this post

It is a very long slow process to put on weight. Try avocado – 1/3 to 1/2 per day. Nuts are good sources of good calories as well. I splurge and have dark chocolate covered nuts sometimes. I also have dark chocolate daily. I will have some “ice cream” made out of cashew milk and sorbet. Eat lots of small meals. I also eat chips and salsa. It’s hard as I eat nothing fried and very little added sugar in my foods. It will take over a year to start putting on the weight, but don’t be discouraged. I also do not drink alcohol so there are no calories there either.

REPLY
@marvinjsturing

@dakotarunner I had my Whipple on June 5 of 2014. The surgeon removed most of my pancreas, 1/3 of my stomach and my duodenum. What was left of my pancreas was so bad that the surgeon did not reattach it to my digestive system. I was diagnosed as Stage 2b. Cancer was found in the tumor on my pancreas and in 1 lymph node. I was released from the hospital on June 11 and started chemo on July 22. It was 5 years ago, but if I remember correctly, I was given Tylenol, an antihistamine, a steroid, anti-nausea medicine and finally gemzar (gemcitabine). I usually took more anti-nausea medicine at night on the day of my chemo. I did this for 3 weeks and then had one week off. The treatment lasted for 6 cycles. After my first chemo, I went to work. That only happened once. After every other chemo treatment, I went home and slept. It was the antihistamine that made me tired. The chemo never made me feel very sick. After every 3 chemo treatments, I was given neulasta. For me, that was worse than the chemo. My legs just above the knees just ached from the neulasta. As far as fatigue, there were days that I felt good so I got ready for work. That effort wore me out and instead of going to work, I sat down in my recliner and slept until noon. Your local oncologist will be able to tell you about your options for treatment. I hope things go as well for you as it did for me.

Jump to this post

My husband and I are at Mayo currently for evaluation of his pancreatic cysts. Although we don’t have a cancer diagnosis the appearance of the cysts is worrisome. Diagnosis wouldn’t actually be able to be determined until surgery. We will be meeting with a surgeon and expect to be discussing the Whipple procedure. What questions did you ask your surgeon and what do you wish you had asked? What do you wish you had known about the surgery and recovery? Any tips on being prepared for diet and cares upon return home? If you had surgery at Mayo, where did your companion stay while you were hospitalized, how did you handle reservations when you don’t know how long the stay will be? Many thanks to anyone who can advise me.

REPLY
@susan2018

My husband and I are at Mayo currently for evaluation of his pancreatic cysts. Although we don’t have a cancer diagnosis the appearance of the cysts is worrisome. Diagnosis wouldn’t actually be able to be determined until surgery. We will be meeting with a surgeon and expect to be discussing the Whipple procedure. What questions did you ask your surgeon and what do you wish you had asked? What do you wish you had known about the surgery and recovery? Any tips on being prepared for diet and cares upon return home? If you had surgery at Mayo, where did your companion stay while you were hospitalized, how did you handle reservations when you don’t know how long the stay will be? Many thanks to anyone who can advise me.

Jump to this post

@susan2018, you're so wise to ask fellow Connect members questions to prepare you for surgery, what questions to ask the surgeon, post-surgical diet and even where to stay at Mayo. I'd like to bring in @marvinjsturing @dianamiracle and @dakotarunner to help answer your questions. They had the whipple procedure done at Mayo Clinic.

Susan, here are some other discussions to explore on Connect.
– Pancreatic cyst https://connect.mayoclinic.org/discussion/pancreatic-cyst/ where you can read about @bonitav's experiences
– Visiting Mayo Clinic https://connect.mayoclinic.org/group/traveling-to-mayo-clinic/
– What are your accommodation recommendations when coming to Mayo? https://connect.mayoclinic.org/discussion/what-are-your-accommodation-recommendations-when-coming-to-mayo/

You can also contact the Mayo Clinic Concierge Services – it is a free service that you can use prior and during your visit to help you find services, such as accommodations, transportation and things to do. You can contact them by email, phone, chat or in person during business hours:

* Phone: 507-538-8438
* Live Chat: https://www.mayoclinic.org/patient-visitor-guide
* Email: concierge@mayo.edu
* Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services

They can also talk to you about how to make reservations when you don't know how long you'll be there.
Susan, Are you at Mayo Clinic Rochester?

REPLY
Please sign in or register to post a reply.