Please do not let this news of liver lesions take you down! I had them all over my liver when diagnosed in 2021. A combination of chemo, surgery, prayer, eating well, staying engaged, and thinking positively has gotten me to a place of minimal disease.
This can be viewed as a chronic condition if one can get it under control quickly. I was stage IV so it took a bit!
Also there is much going on if we can continue to support research funding. I have consulted with multiple SPECIALISTS in this field and learn something new each time.
The most important “rabbit hole” you can go down is one related to your personal gene mutations so that target therapies might be used. Chemo variants/radiation/immunotherapy may work for some but not for others.
Be sure to get second opinions and stay connected via their clinic portals.
I have met with John’s Hopkins, Honor Health and now Cedars Sinai. Each had unique and interesting suggestions or confirmed that I was on the right path.
Also-do not let anyone tell you that stage Iv is inoperable. Always get 2nd opinions. I am here because I did!!!
God bless all who are challenged by this disease.
Thank you very much for this encouraging info this morning
right now my husband is being treated with a chemotherapy that is for both his pancreatic tumor and liver lesions
Onivyde 50 mg for an hour and a half at the clinic ,then he comes home with a chemo pump with Fluorouracil 900 mg for 46 hours
I think they will increase the dose if he tolerates this well, he just started this treatment last week and it's every other week
Praying it works✝️🛐
I am very new to my diagnosis of neuroendocrine pancreatic cancer stage 4. My primary tumor is in the tail of the pancreas with other tumors in the liver and lymph nodes. Does anyone have information on this type of cancer? I see the oncologist tomorrow.
Yes appointment went well. He said this does not respond chemo so offered an hormone injection given once a month and then reevaluate tumors in 3 months. He said no cures but this injection might stop spread and possibly shrink them. Also getting a referral for second opinion.
Yes appointment went well. He said this does not respond chemo so offered an hormone injection given once a month and then reevaluate tumors in 3 months. He said no cures but this injection might stop spread and possibly shrink them. Also getting a referral for second opinion.
I had a second opinion meeting today with University of Kansas cancer center. I was told that any treatment would just be palliative, that my tumors are grade 2, stage 4 and that they are functioning tumors putting out their own hormones. My Serotonin instead of being below 283 is 506, Gastrin instead of 180 is 996, and Chromogranin A which is supposed to be less than 225 is now 1766. He suggested getting a pet scan to see if there are more tumors and how the ones that are there react and also wants to see the biopsy slides at their facility to be able to confirm that they are at grade 2. Sounds like I am back the the first thing God made clear - that he is in control. Doesn't sound like drs can do much.
I was told the same only palliative care 5 years using Lanreotide injection monthly and chemo pills of Capecitabine & Temozolomide which has been well tolerated & liver has rejuvenated more than 60%.
I had radioembolization of my metastatic pancreas lesion on Feb. 9 at Froedert in Milwaukee, Wi. I met with Dr. White and the lesion is completely gone! Unfortunately the CT scan found 4 new tiny lesions on my liver. Hopefully the chemo I'm on will shrink them. My oncologist said I should see if any of the cancer doctors at Froedert know of any trials that I might qualify for. I'm meeting with Dr. George on April 4. I was told it takes a long time to get into any trials, so I will continue with the chemo I'm on. I'm just sharing my results!
I am new to the group. My husband has pancreatic cancer that metastasized to his liver. He was on a chemo treatment 19, in all but he had a reaction to treatment 17 and since then the pancreatic tumor and liver lesions are increasing. Our oncologist wants to put him on gemcitabine and paclitaxel. Can anyone please let me know if they have any experience with this?
I am new to the group. My husband has pancreatic cancer that metastasized to his liver. He was on a chemo treatment 19, in all but he had a reaction to treatment 17 and since then the pancreatic tumor and liver lesions are increasing. Our oncologist wants to put him on gemcitabine and paclitaxel. Can anyone please let me know if they have any experience with this?
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.
I was told the same only palliative care 5 years using Lanreotide injection monthly and chemo pills of Capecitabine & Temozolomide which has been well tolerated & liver has rejuvenated more than 60%.
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!
In reading through the last few posts on this thread, there appears to be two different types of pancreatic cancer metastatic to the liver….exocrine and Neuroendocrine. They are treated differently and Neuroendocrine tumors in general are slower growing and a better prognosis. It is important when responding and describing the treatment if you have pancreatic ductal adenocarcinoma (PDAC), a rare sub-type of exocrine tumor called Acinar Cell Carcinoma (PACC) and Neuroendocrine (PNET) tumors of which there are several types.
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Thank you very much for this encouraging info this morning
right now my husband is being treated with a chemotherapy that is for both his pancreatic tumor and liver lesions
Onivyde 50 mg for an hour and a half at the clinic ,then he comes home with a chemo pump with Fluorouracil 900 mg for 46 hours
I think they will increase the dose if he tolerates this well, he just started this treatment last week and it's every other week
Praying it works✝️🛐
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1 Reaction@justme54, welcome. How did your appointment go with the oncologist? Did you discuss treatment options? How are you doing?
Yes appointment went well. He said this does not respond chemo so offered an hormone injection given once a month and then reevaluate tumors in 3 months. He said no cures but this injection might stop spread and possibly shrink them. Also getting a referral for second opinion.
-
Like -
Helpful -
Hug
1 ReactionI had a second opinion meeting today with University of Kansas cancer center. I was told that any treatment would just be palliative, that my tumors are grade 2, stage 4 and that they are functioning tumors putting out their own hormones. My Serotonin instead of being below 283 is 506, Gastrin instead of 180 is 996, and Chromogranin A which is supposed to be less than 225 is now 1766. He suggested getting a pet scan to see if there are more tumors and how the ones that are there react and also wants to see the biopsy slides at their facility to be able to confirm that they are at grade 2. Sounds like I am back the the first thing God made clear - that he is in control. Doesn't sound like drs can do much.
-
Like -
Helpful -
Hug
2 ReactionsI was told the same only palliative care 5 years using Lanreotide injection monthly and chemo pills of Capecitabine & Temozolomide which has been well tolerated & liver has rejuvenated more than 60%.
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Like -
Helpful -
Hug
3 ReactionsI had radioembolization of my metastatic pancreas lesion on Feb. 9 at Froedert in Milwaukee, Wi. I met with Dr. White and the lesion is completely gone! Unfortunately the CT scan found 4 new tiny lesions on my liver. Hopefully the chemo I'm on will shrink them. My oncologist said I should see if any of the cancer doctors at Froedert know of any trials that I might qualify for. I'm meeting with Dr. George on April 4. I was told it takes a long time to get into any trials, so I will continue with the chemo I'm on. I'm just sharing my results!
-
Like -
Helpful -
Hug
2 ReactionsI am new to the group. My husband has pancreatic cancer that metastasized to his liver. He was on a chemo treatment 19, in all but he had a reaction to treatment 17 and since then the pancreatic tumor and liver lesions are increasing. Our oncologist wants to put him on gemcitabine and paclitaxel. Can anyone please let me know if they have any experience with this?
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.
Best wishes to you both!
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Hug
2 ReactionsHello 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!
In reading through the last few posts on this thread, there appears to be two different types of pancreatic cancer metastatic to the liver….exocrine and Neuroendocrine. They are treated differently and Neuroendocrine tumors in general are slower growing and a better prognosis. It is important when responding and describing the treatment if you have pancreatic ductal adenocarcinoma (PDAC), a rare sub-type of exocrine tumor called Acinar Cell Carcinoma (PACC) and Neuroendocrine (PNET) tumors of which there are several types.
-
Like -
Helpful -
Hug
2 Reactions