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.

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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@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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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

REPLY
@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 💪❤️🫶

Jump to this post

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.

REPLY
@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.

Jump to this post

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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@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.

REPLY
@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.

Jump to this post

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

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@gsterle

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

Jump to this post

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.

REPLY
@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 💪❤️🫶

Jump to this post

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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