Has anyone been able to have surgery for tumor in the tail?

Posted by vlny2018 @vlny2018, Jul 3 12:08pm

Has anyone been able to have surgery for tumor in the tail of the pancreas, stage 4, metastasized to the lymph nodes. My husband's oncologist says that sugery isn't an option ever for him. Just chemo every two weeks until folfirinox doesn't work or becomes too toxic. Then some other chemo mix, then … Is this true? This is so discouraging. If the tumors shrink, can't they do more? My husband has had the cancer go into his lymph nodes close to his kidney and the pressure was closing the tube connecting to his bladder, and now has a stint in place to keep kidney function, which it has done.

We have an appointment with the Mayo Clinic in Rochester in August. My husband just had his 4th treatment and will be having a PET scan the end of July. Other than this, he has been extremely healthy, no bad habits, exercises everyday, and eats clean. This is just a huge punch in the gut, as I'm sure is everyone's experience.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

Have you considered going back on GC and adding abraxane? Abraxane is the really powerful one that eliminated 1 of my liver lesions and shrunk the other lesion that was 1.7 cm to 0.9cm and then I got MRIdean radiation on it to hopefully decimate it (I’ll know by early December when I meet with the radiation specialist). My marker (CA19-9) is in normal range down, but I will stay on chemo GA (I don’t have the BRCA gene, but have the ATM, KRAS12D, and TP53) forever until it stops working. Cisplatin effective for BRCA and PALB genes. There is also a clinical trial out there RM6236 and RM9805 that is showing some positive results so you might ask your oncologist if you might be a candidate. Best wishes on your journey; just realize it can be a bumpy road!

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@mnewland99

Have you considered going back on GC and adding abraxane? Abraxane is the really powerful one that eliminated 1 of my liver lesions and shrunk the other lesion that was 1.7 cm to 0.9cm and then I got MRIdean radiation on it to hopefully decimate it (I’ll know by early December when I meet with the radiation specialist). My marker (CA19-9) is in normal range down, but I will stay on chemo GA (I don’t have the BRCA gene, but have the ATM, KRAS12D, and TP53) forever until it stops working. Cisplatin effective for BRCA and PALB genes. There is also a clinical trial out there RM6236 and RM9805 that is showing some positive results so you might ask your oncologist if you might be a candidate. Best wishes on your journey; just realize it can be a bumpy road!

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We received good news on the PET. We're contacting another trial today at Huntsman in Salt Lake City to see what they can offer and to see other options with this new information. Thank you for your information, we will include it in our conversation.

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@vlny2018

We received good news on the PET. We're contacting another trial today at Huntsman in Salt Lake City to see what they can offer and to see other options with this new information. Thank you for your information, we will include it in our conversation.

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That’s great!

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@hopeful33250

Hello @joiedevivre and welcome to Mayo Connect. I appreciate you sharing your husband's experience with pancreatic cancer. You both have obviously done all that you can in seeking more opinions, learning about this cancer and finding a good oncologist. These are great ways to advocate for your medical care. When you say, "The more you ask, the more you know..." you have put yourself on a good path.

How is your husband feeling these days?

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Husband is doing well, as well as can be living with cancer. Thank you for asking. The main battle is with depression. The other major side effect is fatigue. His CA-19 markers have stayed within 36 for nearly 5 months now. Oncologist has spaced out chemo to once every 3 weeks; still no end to chemo and it is likely he has to be on chemo for a long while. Hopefully, it can be spaced out even more. I think the oncologist's concern is that the cancer will return. I do not understand all the medical terms but oncologist said this type of cancer is aggressive.

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@tkemper

My husband was diagnosed in Nov 2023. He had robotic surgery in Dec to remove 2/3 pancreas, spleen & about 30 lymph nodes. 2 came back positive. Tumor was 3.8 cm. Stage 2B Has since had 12 rounds of chemo & is currently stable.
Hang in there & prayers!

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May I know what chemo regime your husband is on and what does 12 rounds mean? When my husband was on Folfirinox, 1 round was 1 month of 2 chemo sessions.

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@joiedevivre

Husband is doing well, as well as can be living with cancer. Thank you for asking. The main battle is with depression. The other major side effect is fatigue. His CA-19 markers have stayed within 36 for nearly 5 months now. Oncologist has spaced out chemo to once every 3 weeks; still no end to chemo and it is likely he has to be on chemo for a long while. Hopefully, it can be spaced out even more. I think the oncologist's concern is that the cancer will return. I do not understand all the medical terms but oncologist said this type of cancer is aggressive.

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I can appreciate your concern for your husband's fatigue and depression. Is his oncologist or his PCP aware of his depression? Have they suggested any anti-depressant medications or therapies?

You mentioned that his oncologist said that "this type of cancer is aggressive." Did his oncologist mention the stage of your husband's cancer (cancer is often staged using a number)?

How is his appetite? Often when you are having difficulty eating is can contribute to depression or anxiety.

I would like to invite @mnewland99 to this conversation. She might have something to add to your concerns.

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@joiedevivre

Husband is doing well, as well as can be living with cancer. Thank you for asking. The main battle is with depression. The other major side effect is fatigue. His CA-19 markers have stayed within 36 for nearly 5 months now. Oncologist has spaced out chemo to once every 3 weeks; still no end to chemo and it is likely he has to be on chemo for a long while. Hopefully, it can be spaced out even more. I think the oncologist's concern is that the cancer will return. I do not understand all the medical terms but oncologist said this type of cancer is aggressive.

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Hello joiedevivre,
I think in French that means “joy of life”? I haven’t taken French since high school, so forgive my translation. Your husband’s journey sounds similar to mine, but common ground is attained based on the mutations. Mine are KRAS12D, ATM, TP53, and a 4th I never see posted. My surgery was in the mid and tail section of the pancreas. I had 12 rounds or I received 2 infusions of chemotherapy each month for 6 months. After 4 months of no longer receiving chemo, it spread to my liver and possibly it was always around my hepatic artery and abdominal peritoneum. Those areas light up on PET scan but the peritoneal area wasn’t seen on the CT and my biopsy was negative for it. Radiologists say scar tissue but oncologists assume it’s cancer to be in the safe side. I haven’t had any growth on them but I do have occasional pain in those areas.
Right now I’m on GA chemotherapy and will be until some other cure comes along. I was on a short 2-3 week break from the chemo after which time a nodule showed up on lung and a lesion lit up in my femur after a PET scan. I did become depressed at that time and my UCLA oncologist offered the assistance of a marriage and family counselor to speak with. Most oncologists g will be able to put you in contact with one. I spoke with her by phone since I was feeling anxious/depressed at that time. It did help and I highly encourage finding someone like that to speak with. It’s good to have a community to reach out to like siblings, friends, old coworkers, children, neighbors, etc, and of course this forum would be good for your husband to jump on and ask questions or about feelings he might be having. I also created a bucket list of things to do. I don’t like to fly so mine are simple like going to a concert, or going out to a restaurant you wouldn’t go to under typical circumstances as it might be bit pricey. There are so many when you really think about them. The chemo itself didn’t cause depression or anxiety (the two often go hand in hand or can be mistaken for the other). There is anxiety about moving on to the next place in time. My crux has been my faith. I go to church when I can or watch the mass online. I get as many blessings for the sick as I can. I’ve spoken with the priest at my parish. I hope your husband has a faith he can rely on or this might be a good time to find some. Is he eating ok? I take protein shakes and plenty of other foods and vitamin b12 to help me be strong. When I was feeling weak a lot of it had to do with the chemotherapy playing havoc with my underlying cardiac arrhythmia as a high heart rate can you make feel weak. I found a good cardiologist that prescribed the right medication for my rapid heart rate. I don’t know where you live, but hopefully the weather is nice enough to take short walks outside? Please try and get your husband to join in on the forum and I’m so glad you are leading him to this!

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