Husband had Whipple surgery and chemo: He's uncomfortable

Posted by joanalc @joanalc, Jan 31, 2023

I'm trying to be supportive, but he's to undergo chemo for 6 months, and have 5 to go. He's uncomfortable much of the time. Help!

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Profile picture for maedanosetchan @maedanosetchan

I am in a similar situation. I got the biopsy result on Feb. 2 of this year. The size was 1.9 x 2. 5. CA19 was 200. The port was implanted right away and my first chemo started on Feb. 10 at the local hospital, Merkey Cancer Center where I had ERCP and EUS in Lexington, KY. I have had 7 cycles so far, and my CA19 is now 28.1. After my 8th cycle, I will have a Whipple procedure on June 8 at MD Anderson in Houston. I feel you could have started your chemo at the local hospital as I did, but if you are seeing doctors at Mayo in 9 days, maybe no need to do so. I heard it actually takes 10-20 years for pancreatic cancer to form. So, I think one month's wait is not too bad. Please eat a lot of protein, exercise, and make sure you're hydrated. I learned those 3 things are keys. Let's fight against this demon together!

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maedanosetchan,

Thanks for your reply. It helps to connect with someone in similar straits. Treatment intervention 9 days after biopsy results is great. In retrospect, I wish I would have explored options other than Mayo - Rochester due to the unexpected extended time lag. Living in Alaska, as we do, limits one's options. If what you say is true, that it takes a decade or two for pancreatic cancer to form, perhaps the delay won't matter too much. On the other hand, I've read that pancreatic cancer cells grow aggressively. Your recommendations confirm what I've been reading.... hydration, a lot of protein (as well as antioxidants, fiber, fruit, vegetable, etc.), and exercise. My reading also indicates M.D. Anderson is one of the very best places in the country for pancreatic surgery, Whipple procedure or otherwise. Good luck to you, and to everyone else, who find themselves at the beginning of this unexpected journey. I'll follow up with a note showing a list of online pancreatic cancer resources in case it may of use to anyone. Thanks again for sharing.

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Profile picture for wjk @wjk

mayoconnectyser1,

Thanks very much for your reply. How is it possible to be assessed "every day" at Rochester while receiving chemo?

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Because the connection between the oncology department and surgical is so much tighter ... I don't mean assessed in the sense additional scans are fine, but it does mean blood tests are assessed immediately, and, while I have no experience in this regard, Mayo's team would be able to more quickly change chemo regimens.

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Profile picture for mayoconnectuser1 @mayoconnectuser1

wjk,

My non-professional advice is to get chemo started as quickly as possible - and, if there is any way to stay in Rochester, to continue it there. I know this is a very hard and inconvenient, but it will allow them to assess you every day - and you will be able to push for as much chemo as possible - while having an advanced center available to deal with side effects.

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mayoconnectyser1,

Thanks very much for your reply. How is it possible to be assessed "every day" at Rochester while receiving chemo?

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I am in a similar situation. I got the biopsy result on Feb. 2 of this year. The size was 1.9 x 2. 5. CA19 was 200. The port was implanted right away and my first chemo started on Feb. 10 at the local hospital, Merkey Cancer Center where I had ERCP and EUS in Lexington, KY. I have had 7 cycles so far, and my CA19 is now 28.1. After my 8th cycle, I will have a Whipple procedure on June 8 at MD Anderson in Houston. I feel you could have started your chemo at the local hospital as I did, but if you are seeing doctors at Mayo in 9 days, maybe no need to do so. I heard it actually takes 10-20 years for pancreatic cancer to form. So, I think one month's wait is not too bad. Please eat a lot of protein, exercise, and make sure you're hydrated. I learned those 3 things are keys. Let's fight against this demon together!

REPLY
Profile picture for wjk @wjk

Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8 X 1.9 cm was detected at the head of my pancreas proximal to the extreme lower common bile duct resulting in abdominal pain, light jaundice, very dark urine, abnormal bowel movements, enlarged bile duct/gall bladder/pancreatic duct, grossly elevated enzymes and bilirubin, and a CA 19.9 of 316. The abdominal CT scan showed no other abnormalities. Following an ERCP procedure and insertion of a plastic stent the following day, most signs and symptoms went away over the course of a week. We now are anxiously awaiting a series of appointments at the Mayo Clinic - Rochester beginning in 9 days and very eager to get going. We were initially advised we'd been seen promptly, but it's now been a month long wait and we are concerned the tumor has grown and perhaps metastasized. We hope the tumor is benign and resectable, but are preparing for something worse. Any and all advice welcome. Thanks for sharing your story.

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wjk,

My non-professional advice is to get chemo started as quickly as possible - and, if there is any way to stay in Rochester, to continue it there. I know this is a very hard and inconvenient, but it will allow them to assess you every day - and you will be able to push for as much chemo as possible - while having an advanced center available to deal with side effects.

REPLY

Thanks very much for the background information and sharing tumor size. Three weeks ago a 1.8 X 1.9 cm was detected at the head of my pancreas proximal to the extreme lower common bile duct resulting in abdominal pain, light jaundice, very dark urine, abnormal bowel movements, enlarged bile duct/gall bladder/pancreatic duct, grossly elevated enzymes and bilirubin, and a CA 19.9 of 316. The abdominal CT scan showed no other abnormalities. Following an ERCP procedure and insertion of a plastic stent the following day, most signs and symptoms went away over the course of a week. We now are anxiously awaiting a series of appointments at the Mayo Clinic - Rochester beginning in 9 days and very eager to get going. We were initially advised we'd been seen promptly, but it's now been a month long wait and we are concerned the tumor has grown and perhaps metastasized. We hope the tumor is benign and resectable, but are preparing for something worse. Any and all advice welcome. Thanks for sharing your story.

REPLY
Profile picture for wjk @wjk

If you don't mind sharing, what was the initial size of your husband's tumor? Thanks.

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Good Morning @wjk . The size of my husband's tumor was 5.8cm in the head of the pancreas. Partial response to neoadjuvant treatment and at time of removal was 5.4cm. No signs of metastasis on any scans (CT, PET, MRI, and diagnostic laparoscopy) but due to the size he is staged at IIA. 8 rounds of chemo (Folfirinox) pre-surgery and doing the final 4 now (last one is June 13th).

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Profile picture for icelander19 @icelander19

Thanks for the info on Creon. I used to take enzymes - for quite a while after I had the surgery. But then decided to stop. I take Domperidone twice a day half hour before meals and it has helped. Still get the pressure of gas building up a lot of the time. When that happens, I get my heat bag in the micro and use that to comfort my tummy. It's something I can live with. How did you find out you have a hernia? I keep wondering about something around the incision area. I see a doc next week so will ask about that.

You're so right - 5 years is a great accomplishment. I have been very lucky. I wish the best to you as well.

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@icelander19 my oncologist scheduled a surgical consult for an endoscopy due to some symptoms I had been experiencing. Surgeon had a quick visual look at Whipple incision area while I was standing and then again while laying down. He informed me that the bulge was a hernia, and had me feel where it was. I had questioned the bulge long ago (a few months after Whipple surgery, once I started eating myla re normally) and was told that was just how I had healed. I assumed it was a result of the restructured digestive system. I now know what to watch for - at this time they don’t want to repair it as it isn’t causing any problems.

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Profile picture for mamarina @mamarina

Why only for those who have had surgery? But I did see news

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Not sure.

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Profile picture for pendesk8 @pendesk8

exciting news this morning.The germans have discovered a vaccine for pancreatic cancer specific to people that have had surgery.To keep cancer from coming back.They are using it at Johns hopkins and sloan kettering.

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Why only for those who have had surgery? But I did see news

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