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

Posted by vlny2018 @vlny2018, Jul 3, 2024

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.

Profile picture for gsterle @gsterle

Hello -

I am a 69-year-old male residing in Northeast Ohio and I am currently being treated for Acinar Pancreatic cancer at the Cleveland Clinic Taussig Center.

My cancer journey begins in 2020 as I was treated for a leiomyosarcoma cancer on my left testicle. I had surgery at the Cleveland Clinic in January of 2021 to successfully remove the cancer / testicle with clean edges and I continued with follow up CT scans every 6 months. The follow-up scans detected Acinar pancreatic cancer in August of ’23 with tumors on the tail of my pancreas.

I had surgery at the Cleveland Clinic in September 2023, a tail distal pan to remove 1/2 my pancreas (tail) and spleen with clean edges. The cancer had metastasized to my liver (3 tumors detected).

Genetic testing revealed that I have the BRCA2 gene mutation. Note that my father and brother both passed from Pancreatic Cancer.

I started chemotherapy at the Cleveland Clinic in November 2023 - gemcitabine and cisplatin (platinum based) After 12 rounds of chemo completing in March of 2024, I responded well and the liver tumors shrinking to 1/2 their size.

I started 250MG x2 daily of the oral PARP inhibitor “Lynparza” which targets the BRCA2 mutation in May 2024 and the CT scans revealed tumor reduction with no spread or new tumors.

I met with my surgeon in October 2024 and discussed ablation for the remaining liver tumors (2). I had a pre-surgical MRI and unfortunately additional tumors have been detected on my liver. These tumors did not appear on the August 2023 MRI (prior to surgery) nor had they appeared on my regular 3-month CT scans. Based on the number of tumors present the ablation is no longer an available option.

It appears that the current Lynparza 250mg twice a day is no longer having a positive impact thus I will begin chemo (gem/cis) the week of December 7th 2024.

I am eating well, exercising daily, maintaining my weight (5”11” 185lbs) and sleeping well. My side effects are minimal, cold, fatigue, dry mouth and some joint/lower back pain.

My wife of 42 years has been my care-taker and soul-mate.

I am interested in any clinical trials available to address my Acinar Pancreatic Cancer (BRCA2) with liver mets.

Stay strong and fight 💪❤️🫶

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If you have children, you should get them tested for the BRCA mutation. My husband had pancreatic cancer and is still undergoing treatment. He does not have the BRCA mutation in his blood but it was found in the tumour cells. We were told by our oncologist that the BRCA mutation tumour is best treated with Gem-Abraxane. We were told there are Plan B, Plan C and clinical trials if Gem-Abraxane stops working but onco has not told us what they are because the Gem-Abraxane is still working for my husband.
Like your wife, I am my husband's caregiver. It is a tough journey for her I am sure. I wish you both all the best.

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Colleen
Thanks for reaching out.
She’s just started first phase chemo treatment - Folfirinox.
PET scan imagery indicate its spread to the ovary, peritoneum and possibly the liver.
A genome test now underway with results in a few weeks.
As the cancer is not resectable, we’re committed to a few months of chemo and see how that is helping contain or shrinks .
Meanwhile we are looking at second stage treatment options from a number of other cancer treatment centers . We’ve heard of FDA phase 2 trials of some success with daily 75gram intravenous VitaC injections in concert with Folfironix or another chemo cocktail. Anxious to get back genome test results to know if there are more targeted immunological options.
Please share your thoughts.. If more details helpful, we’ll be happy to send.

With thanks and best wishes for your holidays

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Profile picture for pault60 @pault60

My wife just diagnosed with similar conditions. Haven’t started chemo yet. See your post was about 5 months ago, wondering how it’s been going since? Wishing you well,
All the best,

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Hi @paul60, how are you and your wife doing? When will she be starting chemo?

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Hello -

I am a 69-year-old male residing in Northeast Ohio and I am currently being treated for Acinar Pancreatic cancer at the Cleveland Clinic Taussig Center.

My cancer journey begins in 2020 as I was treated for a leiomyosarcoma cancer on my left testicle. I had surgery at the Cleveland Clinic in January of 2021 to successfully remove the cancer / testicle with clean edges and I continued with follow up CT scans every 6 months. The follow-up scans detected Acinar pancreatic cancer in August of ’23 with tumors on the tail of my pancreas.

I had surgery at the Cleveland Clinic in September 2023, a tail distal pan to remove 1/2 my pancreas (tail) and spleen with clean edges. The cancer had metastasized to my liver (3 tumors detected).

Genetic testing revealed that I have the BRCA2 gene mutation. Note that my father and brother both passed from Pancreatic Cancer.

I started chemotherapy at the Cleveland Clinic in November 2023 - gemcitabine and cisplatin (platinum based) After 12 rounds of chemo completing in March of 2024, I responded well and the liver tumors shrinking to 1/2 their size.

I started 250MG x2 daily of the oral PARP inhibitor “Lynparza” which targets the BRCA2 mutation in May 2024 and the CT scans revealed tumor reduction with no spread or new tumors.

I met with my surgeon in October 2024 and discussed ablation for the remaining liver tumors (2). I had a pre-surgical MRI and unfortunately additional tumors have been detected on my liver. These tumors did not appear on the August 2023 MRI (prior to surgery) nor had they appeared on my regular 3-month CT scans. Based on the number of tumors present the ablation is no longer an available option.

It appears that the current Lynparza 250mg twice a day is no longer having a positive impact thus I will begin chemo (gem/cis) the week of December 7th 2024.

I am eating well, exercising daily, maintaining my weight (5”11” 185lbs) and sleeping well. My side effects are minimal, cold, fatigue, dry mouth and some joint/lower back pain.

My wife of 42 years has been my care-taker and soul-mate.

I am interested in any clinical trials available to address my Acinar Pancreatic Cancer (BRCA2) with liver mets.

Stay strong and fight 💪❤️🫶

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There are clinical trials for many gene mutations. Call pancan.org and get a patient navigator to help you find those that fit your profile.
It is never too early to be looking.

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Exactly the same situation as my husband. Chemo is tough but manageable for him. He’s had a year of chemo. He tested for BRCA and gene mutation to see if there are alternatives to chemo - no luck. But so far no cancerous activity anywhere. Hang in there!

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I was diagnosed c adenocarcinoma of the pancreas x 6 mo ago. Diagnosis was challenging as many GP's focus on other maladies before ordering a CT. Imagery revealed it was located in the tail c no ductal intrusion. Surgery was recommended (robotic) and I've had a pancreatic tail resection and splenectomy. During the surgery it was discovered that the tumor had migrated to the stomach and according to the surgeon CT is not always accurate. Recovery p surgery was difficult and since the procedure I have completed six (6) rounds (six more to go) of folfirinox chemotherapy due to the threat of micro -metastasis despite negative margins. Awaiting PET results to determine efficacy but will be prepared for a Plan B. Learning of ongoing stage 2 trials for potential pancreatic CA vaccines and suggest that everyone remain vigilant in regard to these trials. Anyone experiencing CA of ANY type has my empathy and best wishes.

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My wife just diagnosed with similar conditions. Haven’t started chemo yet. See your post was about 5 months ago, wondering how it’s been going since? Wishing you well,
All the best,

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Profile picture for joiedevivre @joiedevivre

I read the spotlight interview - can put a face to the name. I live in SE Asia. I hope you and your husband are doing well. My husband (to me because he cannot see it!) gets stronger every day - not by leaps and bounds but small improvements. Still on Gem-Abraxane (9th month) and with few side effects, for which we are thankful. If you ever get on a plane to my part of the world, message me yes? Thank you for your prayers and I will remember you in mine.

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@joiedevivre so glad to hear your husband is doing better! I’ll be praying for both of you and I sincerely wish you many good days ahead.

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Profile picture for marienewland @mnewland99

Hi joiedevivre,
How are you and your husband doing?
My husband is out of the hospital now and on the slow mend. By the way, I thrive as being a multitasker so I often do have a lot on my plate. The change in energy level since I got cancer has been difficult to accept as my new normal since I was quite the multitasker so I understand where your husband coming from with his new version of himself being a bit weaker. Take solace in the fact that the weakness means the body is trying to use its own defenses to fight the cancer.
Did you meet your husband in high school? You have been with him a very long time and I understand the fear that goes along with the thought that you might not get to grow old together as you had planned. I met my husband when I was 22 but may have well just bern 18! I went to an all girls Catholic school and didn’t date in high school with the exception of 1 boy I was fixed up with whom I didn’t realize at the time that I was on a date until years later! I thought we were just friends. I always say my husband raised me! Wright was also in the hospital 1 month ago with pneumonia and changes on his CT scan which drs thought MIGHT be cancer (but they are not). During that time It had a lot of anxiety about the possibility that he actually might go before me. Right now as with many of us we don’t know our timeline. I would advise that you grow those connections with your children (if you have) and with friends and get involved with activities with them or at the senior center to make YOU happy. You will need these connections when that time comes. Faith in a higher power is another source of strength. With my mom and dad it was very difficult to lose them, to ease the pain I try and focus on the fact that they are relieved off their suffering they incurred while sick (my dad had pancreatic cancer and my mom had dementia and a stroke). Also, try and focus on the good times you have now with your husband and create a bucket list. Being a caregiver is much more difficult than non caregivers realize. I commend you for that and am praying for you. Please let me know how you are doing. Also, Mayo did a spotlight interview on me; check it out maybe it provides some inspiration?

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I read the spotlight interview - can put a face to the name. I live in SE Asia. I hope you and your husband are doing well. My husband (to me because he cannot see it!) gets stronger every day - not by leaps and bounds but small improvements. Still on Gem-Abraxane (9th month) and with few side effects, for which we are thankful. If you ever get on a plane to my part of the world, message me yes? Thank you for your prayers and I will remember you in mine.

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