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Anyone have experience with mRNA trials for pancreatic cancer?

Posted by dalegantous @dalegantous, Oct 24 6:34am

Hi! I was diagnosed December 2023, had modified Whipple February 2024 with clear margins, completed 12 rounds of Folfirinox in September. CA19-9 and CT scans were all clear throughout treatment, then got a shock in CT scan October 2nd, 2 lesions in my liver, also weirdly 2 nodules in the subcutaneous soft tissue just under the skin in my belly. Had biopsy on my belly, waiting for results. Oncologists recommend Gemcitabene/Abraxane which I am starting November 1st. Since this cancer has come back so quickly after completing Folfirinox, I am worried the next chemo may not stop it. I am interested in finding out if anyone has experience with any trials of the new mRNA vaccines being developed.

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marienewland | @mnewland99 | Oct 24 9:52pm

Hello dalegantous!
Very sorry to hear yours metastasized so quickly. Upon original diagnosis, was there any lymph node involvement? With me in stage 2 there was 1 lymph node and apparently that’s all it took! I had the distal surgery, fulfirnox chemo and mine and I also quickly went into stage 4 when it metastasized to the liver. I believe the underlying problem was when I was undergoing fulfirnox there was a soft tissue area around my hepatic/celiac artery that the radiologist and my oncologist (who I no longer have) said it was just scar tissue but they were wrong. I then went on GAC chemotherapy (now on just GA as an experiment) and it’s addressing my liver lesion very well; almost gone and I recently tried to address it’s remnant with MRIdean and I’m still waiting for the results. Prayers for you.

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1 reply
dalegantous | @dalegantous | Oct 25 5:46am
In reply to @mnewland99 "Hello dalegantous! Very sorry to hear yours metastasized so quickly. Upon original diagnosis, was there any..." + (show)
@mnewland99

Hello dalegantous!
Very sorry to hear yours metastasized so quickly. Upon original diagnosis, was there any lymph node involvement? With me in stage 2 there was 1 lymph node and apparently that’s all it took! I had the distal surgery, fulfirnox chemo and mine and I also quickly went into stage 4 when it metastasized to the liver. I believe the underlying problem was when I was undergoing fulfirnox there was a soft tissue area around my hepatic/celiac artery that the radiologist and my oncologist (who I no longer have) said it was just scar tissue but they were wrong. I then went on GAC chemotherapy (now on just GA as an experiment) and it’s addressing my liver lesion very well; almost gone and I recently tried to address it’s remnant with MRIdean and I’m still waiting for the results. Prayers for you.

Jump to this post

Yes there were 3 of 26 lymph nodes involved and some nerve tissue. I was hopeful because all my margins were clear. Happy to hear that the Gemcitabene/Abraxane is working for you! How are the side effects?
Thanks very much!

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1 reply
gamaryanne | @gamaryanne | Oct 25 8:25am

Lymph node involvement is a signal for us to be in close surveillance for growths later elsewhere. The good news? There are incredible tools being developed for us in different trial stages.
Vaccines and immunotherapy are in development but significant positive results are not in yet. If you have the KRAS mutations, there ARE trials showing excellent results.
Call PANCAN.org and give them your details so they can help you navigate the trials that may be the best fit. This may be an alternative or complement to your oncologists suggestions.

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marienewland | @mnewland99 | Oct 26 9:10am
In reply to @dalegantous "Yes there were 3 of 26 lymph nodes involved and some nerve tissue. I was hopeful..." + (show)
@dalegantous

Yes there were 3 of 26 lymph nodes involved and some nerve tissue. I was hopeful because all my margins were clear. Happy to hear that the Gemcitabene/Abraxane is working for you! How are the side effects?
Thanks very much!

Jump to this post

Nerve tissue involvement is inevitable. My margins were clear also, and if they are really clear, as in my case, then no subsequent growth occurred at the surgery site. The side effects from Gem/Abraxane are not bad except for the fact that I lost my hair and eyelashes and eyebrows, but I see that as a small swap to pay for being able to live a few more months or years in this life. Some nausea, but just stick to foods that are easy on your digestion the day of finishing your chemo treatment (soups, yogurt, protein shakes, etc). Some tiredness so just take it easy for a couple of days, but after that be sure to walk a bit to keep up your stamina. Drinks lots of water after each treatment to flush the toxins out of system and to keep dehydrated as constipation isn’t fun, other than that immerse yourself in fun activities or even a bucket list and enjoy life!

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1 reply
dalegantous | @dalegantous | Oct 26 10:16am
In reply to @mnewland99 "Nerve tissue involvement is inevitable. My margins were clear also, and if they are really clear,..." + (show)
@mnewland99

Nerve tissue involvement is inevitable. My margins were clear also, and if they are really clear, as in my case, then no subsequent growth occurred at the surgery site. The side effects from Gem/Abraxane are not bad except for the fact that I lost my hair and eyelashes and eyebrows, but I see that as a small swap to pay for being able to live a few more months or years in this life. Some nausea, but just stick to foods that are easy on your digestion the day of finishing your chemo treatment (soups, yogurt, protein shakes, etc). Some tiredness so just take it easy for a couple of days, but after that be sure to walk a bit to keep up your stamina. Drinks lots of water after each treatment to flush the toxins out of system and to keep dehydrated as constipation isn’t fun, other than that immerse yourself in fun activities or even a bucket list and enjoy life!

Jump to this post

Thank you! Good advice.

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