Chemo not working. What to do next??? Please help!!!

Posted by helenar @helenar, Oct 30, 2022

So on Thursday, after 3months of treatment, I was informed by my oncologist that the Gem/Abraxane is also NOT working.
The mass in my pancreas grew with 8mm, the lesions in my liver stayed relatively stable, with one of the two showing growth of 2mm

I asked if they can do radiation and she said she will come back to me.

Can they do radiation? What about ablation radiation?? Surely there must be something more we can do????

Please help!!!!

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

@tra418

Do you know what centers do the less invasive Whipple ??Was just told my 74 year old husband may need that .Not sure if he would do well with that large surgery .Just starting this journey this week , misdiagnosed with bile duct ,sample where not conclusive ,need a repeat ERCP Friday ,after getting an ilius and pancreatitis.Still no good biopsy.So frustrating and scary waiting .Glad this group is here .♥️🙏

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Has he had a CT or PET? Have blood marker tests CA19-9 and CEA been done?

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@esacia

Hello Pendesk8,
Is doing the whipple by laparoscopy standard or are they just starting to do some cases this way because as you said, it is less invasive.

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PanCAN.org provides lists of doctors (and cancer centers) who perform lap pancreatic surgeries, how many they do a year and where. They should have a list of how many surgeries per year are done at the various Mayo Clinics as well as all relevant clinics in your prefered geographic area. It's a good starting point. Experience counts. Choose a place or surgeon who does tons of them! Experience matters with this surgery.

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My husband is 84 with inoperable localized neuro endocrine pancreatic cancer. How long does chemo extend life. His CA-19-9went up70points last month. He started with a count of 16,000 and went down to 118 The tumor went up on the 6th chemo session. Is all this worth what he goes thru considering his age

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carol,

A very painful choice to make.

What are the PET and CT scan results? This information should provide some indication as you work through dealing with this very difficult disease.

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tra48,
I had lap cum robotic surgery in Changi Hospital in Singapore in 2020.

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tra,

Could you provide additional info?
- stage of pancreatic cancer?
- was there metastasis?
- PET and CT scan results?
- adjuvant or neoadjuvant CHT and CRT and for how long in each case?
- CA 19-9 trends before and after Whipple surgery?

Thanks!

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@mayoconnectuser1

carol,

A very painful choice to make.

What are the PET and CT scan results? This information should provide some indication as you work through dealing with this very difficult disease.

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Locally advanced stage 2A2T. Just learned today his number are now 74. Been on chemo five months. Doctor is pleased

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@carol1951

Locally advanced stage 2A2T. Just learned today his number are now 74. Been on chemo five months. Doctor is pleased

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We started at 16,000. Now 74

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@dubbscopper

I just sent Dr Truty my scans too- hoping to hear back... he seems to be one step ahead of other surgeons in a few different factors-vascular surgeon on scene -along with radiologist with the updated knife and lastly tumor straight to mice for regrowth and immuno study.
I am now going to MGH after Dana Farber said too close to vessel for operation and I’m not even done chemo or radiation. FYI my tumor is 2cm and no spread attachment or otherwise- just too close to the Celiac( liver) artery. Definitely use your energy to read here or research -let the bills and thank you stuff wait...

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Who did you see at Dana Farber?
If Dr Thomas Clancy said it was not possible, it is likely not. My husband had the laparoscopic Whipple with him a few weeks ago. Excellent.
He was Borderline resectable with a larger tumor and mesenteric vein adjacent. Underwent 8 cycles of Folfirinox but then had a thrombosis so surgery delayed while he had two more rounds while on blood thinners. The surgery went well but then he had a pneumothorax. Clear margins around tumor, but Pathology report found lymph node involvement (4).

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@jessie59

tra48,
I had lap cum robotic surgery in Changi Hospital in Singapore in 2020.

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Hello @jessies59 and welcome to Mayo Connect. I'm glad that you found this forum. Mayo Connect is a great place to share experiences. You mentioned that you had robotic surgery in 2020.

If you are comfortable sharing more about your NETs experience, please share more about the location of your NET, symptoms that led to the diagnosis, etc.

How are you feeling now?

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