I had 12 rounds of Folfirinox chemo before Whipple surgery, and have had 30 biweekly rounds of GAC (gemcitabine + nab-paclitaxel / Abraxane + cisplatin) over the last 14 months. I'm stage-IV, but my mets are elsewhere in the abdomen / peritoneum instead of the liver.
I got about 13 months of really good tumor control on the GAC, but the cancer seems to be developing some resistance to it now. The GAC has been much easier for me to tolerate (mostly 2-3 days of fatigue and mild nausea) than Folfirinox was, but I know two people who have had really bad reactions to it.
Everyone is different, but most people tolerate GA well. If you're concerned, you can ask his oncologist about testing him for sensitivity (allergy) to any ingredients before starting. You might also consider starting low; e.g., do only Gem at the 1st treatment, only Abraxane at the 2nd, and then combine them starting on the 3rd. Or if you combine them at the beginning, maybe start at lower doses for the first 1-2 treatments to see how he responds.
Hi. Yes I had a liver lesion from pancreatic NETS. I had a liver ablation and doing great . I just had all my scans and blood work yesterday everything looking great.
Hello
I was a stage 2 in September 2022 and had surgery at which point DNA was done on some of tissue they extracted. I’m still not clear if KRAS mutations can be found in blood work for those who weren’t able to have surgery. I also have a variant of base 40 in the ATM gene, and a mutation of TP53. I had 12 rounds of 5FU chemo after surgery and a CA19-9 of 6. 4.5 months later during my first quarterly checkup my CA19-9 was rising eventually to 3840. I got an MRI (thanks to sharing of treatment history by markymarkfl); as previously my CT s and PET scan showed nothing but soft tissue that were taken for scar tissue. The MRI showed exocrine metastasis to liver with 2 lesions small in size. In January 2024 I started GAC chemo complex and my ca19-9 is decreasing and 1 liver lesion has shrunk and the other disappeared. I hope this information helps. My plan when chemo no longer becomes effective is to enter a clinical trial.
Hello
I was a stage 2 in September 2022 and had surgery at which point DNA was done on some of tissue they extracted. I’m still not clear if KRAS mutations can be found in blood work for those who weren’t able to have surgery. I also have a variant of base 40 in the ATM gene, and a mutation of TP53. I had 12 rounds of 5FU chemo after surgery and a CA19-9 of 6. 4.5 months later during my first quarterly checkup my CA19-9 was rising eventually to 3840. I got an MRI (thanks to sharing of treatment history by markymarkfl); as previously my CT s and PET scan showed nothing but soft tissue that were taken for scar tissue. The MRI showed exocrine metastasis to liver with 2 lesions small in size. In January 2024 I started GAC chemo complex and my ca19-9 is decreasing and 1 liver lesion has shrunk and the other disappeared. I hope this information helps. My plan when chemo no longer becomes effective is to enter a clinical trial.
Hello KC,
Your news is encouraging to hear! If ok, could you please share the pancreatic mutation you have? - BRCA, KRAS (C or D), ATM, PALB? Also tne locations of you our tumor (tail head, lymph nodes, liver I see). Sorry to be so intrusive, but when I share your treatment regimen (5 years) these are the questions my UCLA oncologist will ask me. Thank you in advance!
I have an inoperative pancreatic Neuroendocrine cancer it’s nonfunctioning hormonally that has metastasized to the liver located in all parts of the pancreas when found both pancreas & liver were enlarged liver tumors were to numerous to count referred to as Swiss cheese.
I have an inoperative pancreatic Neuroendocrine cancer it’s nonfunctioning hormonally that has metastasized to the liver located in all parts of the pancreas when found both pancreas & liver were enlarged liver tumors were to numerous to count referred to as Swiss cheese.
@ncteacher
I’m stage 4 as well but discovered a high dose radiation treatment (NOT the same as SBRT that most oncologist know about) at Memorial Sloan Kettering in NYC. It was 3 full weeks/5 days a week. I was able to be off chemo for 6 mos. Some people have gone considerably longer. There are very few places that do this method and Dr. Christopher Crane at MSK pioneered it so I went there. Maybe worth looking into for your situation. He’s very good at getting back to you and explaining the procedure. And we were set up at Hope Lodge and stayed for free.
I found a journal article and sent an email to Dr. Crane. He immediately called me. I wasn’t even a patient yet and he took the time to discuss the procedure with me. I may be headed back for additional radiation for the met on my liver next. Local doctors say they cannot do it but they can at MSK. I wish MSK was closer. I would just go there for all my treatment
I found a journal article and sent an email to Dr. Crane. He immediately called me. I wasn’t even a patient yet and he took the time to discuss the procedure with me. I may be headed back for additional radiation for the met on my liver next. Local doctors say they cannot do it but they can at MSK. I wish MSK was closer. I would just go there for all my treatment
Do you happen to have his email still? I tried calling there this morning but they would not let me through to him or give me an email. We are far away as well and I was hoping to have a little prelim info about if my father would be a possible candidate or not for that before we commit to traveling so far.
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Thank you for your response. We will speak to our oncologist Monday. This
was helpful!
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2 ReactionsHi. Yes I had a liver lesion from pancreatic NETS. I had a liver ablation and doing great . I just had all my scans and blood work yesterday everything looking great.
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4 ReactionsHello
I was a stage 2 in September 2022 and had surgery at which point DNA was done on some of tissue they extracted. I’m still not clear if KRAS mutations can be found in blood work for those who weren’t able to have surgery. I also have a variant of base 40 in the ATM gene, and a mutation of TP53. I had 12 rounds of 5FU chemo after surgery and a CA19-9 of 6. 4.5 months later during my first quarterly checkup my CA19-9 was rising eventually to 3840. I got an MRI (thanks to sharing of treatment history by markymarkfl); as previously my CT s and PET scan showed nothing but soft tissue that were taken for scar tissue. The MRI showed exocrine metastasis to liver with 2 lesions small in size. In January 2024 I started GAC chemo complex and my ca19-9 is decreasing and 1 liver lesion has shrunk and the other disappeared. I hope this information helps. My plan when chemo no longer becomes effective is to enter a clinical trial.
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2 ReactionsPraying my husband's liver lesions shrink with the chemo regimen he is on now
thank you for your information
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2 ReactionsI have an inoperative pancreatic Neuroendocrine cancer it’s nonfunctioning hormonally that has metastasized to the liver located in all parts of the pancreas when found both pancreas & liver were enlarged liver tumors were to numerous to count referred to as Swiss cheese.
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2 ReactionsHopefully it will; takes a few treatments if it responds.
Thank goodness for you! I wish you continued good care; you are bviously in good hands.
How did you find this type of radiotherapy? Did you have a Mayo doctor recommend it or did you find it on your own?
I found a journal article and sent an email to Dr. Crane. He immediately called me. I wasn’t even a patient yet and he took the time to discuss the procedure with me. I may be headed back for additional radiation for the met on my liver next. Local doctors say they cannot do it but they can at MSK. I wish MSK was closer. I would just go there for all my treatment
Do you happen to have his email still? I tried calling there this morning but they would not let me through to him or give me an email. We are far away as well and I was hoping to have a little prelim info about if my father would be a possible candidate or not for that before we commit to traveling so far.