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 joiedevivre @joiedevivre

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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I need to correct the information I gave here, which is wrong. I misunderstood the oncologist. My husband did not have the BRCA mutation but the KRAS G12D mutation (not BRCA) was found in the tumour and that is the mutation that can be treated by Gem-Abraxane. Sorry for the wrong info; so much info needs to be processed and understood.

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Profile picture for lkat01 @lkat01

Hello, I am scheduled for an MRI on Jan 20th after CT scan showed a new lesion on the tail of the pancreas. I live in North East Ohio. I am not looking forward to the chemo. I have been there once before. I hope you have good results in the future .

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Hi there. I know what you mean about chemo. My first 12 rounds of folfirinox seemed like a walk in the park compared to my later run with gemabrax. I hopes it goes well with you

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Profile picture for marienewland @mnewland99

Have you thought of an alternative like MRIdean radiation? I dint even know if pancreas is a candidate for that. Is surgery not an option? I had distal surgery and MRIdean on my liver lesion; they both worked well.

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Not sure of anything yet. Will have to see what the MRI shows.

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Profile picture for lkat01 @lkat01

Hello, I am scheduled for an MRI on Jan 20th after CT scan showed a new lesion on the tail of the pancreas. I live in North East Ohio. I am not looking forward to the chemo. I have been there once before. I hope you have good results in the future .

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Have you thought of an alternative like MRIdean radiation? I dint even know if pancreas is a candidate for that. Is surgery not an option? I had distal surgery and MRIdean on my liver lesion; they both worked well.

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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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Hello, I am scheduled for an MRI on Jan 20th after CT scan showed a new lesion on the tail of the pancreas. I live in North East Ohio. I am not looking forward to the chemo. I have been there once before. I hope you have good results in the future .

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Profile picture for gsterle @gsterle

Question - have you discussed PARP inhibitors that target BRCA - I was taking Lynparza.

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No. The BRCA was found in the tumour only and not in his blood. At the moment Gem-Abraxane is working. I will ask the oncologist the next time we see her.

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Profile picture for joiedevivre @joiedevivre

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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Question - have you discussed PARP inhibitors that target BRCA - I was taking Lynparza.

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Profile picture for gsterle @gsterle

Thank you for the reply. I do have four children and they have had genetic testing for BRCA. I am currently back on gem/cis as it was working shrinking the tumors during my first 12 rounds. I will continue with a scan coming mid-feb to see if I am responding - nothing new and stable or shrinking. Once gem/cis stops or my numbers drop so I can’t take it I will look into clinical trials or other cocktails. Stay strong and in the fight 💪🫶

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We ain't giving up the fight. Thanks for the encouragement. You have the same chemo side effects as my husband - dry mouth, cold, fatigue; but he has some feelings of anxiety. The reason he is still on chemo is because the jury is out on some "shadows" on his liver in PET scans. Those shadows have not done anything in 6 months so we will remain hopeful.

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Profile picture for joiedevivre @joiedevivre

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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Thank you for the reply. I do have four children and they have had genetic testing for BRCA. I am currently back on gem/cis as it was working shrinking the tumors during my first 12 rounds. I will continue with a scan coming mid-feb to see if I am responding - nothing new and stable or shrinking. Once gem/cis stops or my numbers drop so I can’t take it I will look into clinical trials or other cocktails. Stay strong and in the fight 💪🫶

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