1. < Pancreatic Cancer

Pancreatic cancer relapse

Posted by lilliejane2 @lilliejane2, Jul 18, 2023

Hello. I was told by oncologist that he believes the pancreatic cancer has come back after 18 months cancer free. Still waiting on biopsies of lymph nodes near what was described as possible mass near original
Cancer site. Has anyone experienced a pancreatic cancer relapse and survived long term?

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

wheatley | @wheatley | Oct 11, 2023
In reply to @colleenyoung "@lilliejane2, checking in. How are you doing with the first Folfirinox treatment minus the oxaliplatin?" + (show)
@colleenyoung

@lilliejane2, checking in. How are you doing with the first Folfirinox treatment minus the oxaliplatin?

Jump to this post

I initially went thru 12 FOLFIRINOX , the last one w/o oxaliplatin. About 6 months later went back on FOLFIRINOX w/o ox. Have had 10 treatments. Side effects are manageable but can anyone tell me what I am missing by not having ox as p/o my treatment?

REPLY
1 reply
wheatley | @wheatley | Oct 11, 2023
In reply to @ncteacher "Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that..." + (show)
@ncteacher

Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that treatment options seem to vary so widely depending on which MD you see. I don't qualify for surgery and am stage 4 based on a visual check during laparoscopy. I've never been offered radiation therapy. What stage were you when you were diagnosed? It may be that radiation is reserved for patients whose cancer is limited to one site and hasn't metastasized.

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I have stage 4 (liver) and had SBRT . Liver now seems clear but oncologist won’t reclassify me to stage 3. That eliminates me from many clinical trials as well as surgery

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1 reply
lilliejane2 | @lilliejane2 | Oct 11, 2023
In reply to @colleenyoung "@lilliejane2, checking in. How are you doing with the first Folfirinox treatment minus the oxaliplatin?" + (show)
@colleenyoung

@lilliejane2, checking in. How are you doing with the first Folfirinox treatment minus the oxaliplatin?

Jump to this post

Hi Collen,
Thank you for checking on me. Day 1 was good..the steroids and anti
Nausea drugs were terrific. Day 2 - 6 were tough. Nausea, body pain, and unrelenting fatigue that actually scared me. As of Sunday, much better. Feeling almost normal. Trying to exercise and eat well gearing up for next treatment on Monday. Thank you again. Hope all is well with you.

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1 reply
lilliejane2 | @lilliejane2 | Oct 11, 2023
In reply to @wheatley "I have stage 4 (liver) and had SBRT . Liver now seems clear but oncologist won’t..." + (show)
@wheatley

I have stage 4 (liver) and had SBRT . Liver now seems clear but oncologist won’t reclassify me to stage 3. That eliminates me from many clinical trials as well as surgery

Jump to this post

Have you gotten a second opinion about trials? I read that Sloan Kettering
is working on individualized MRNA vaccines that are showing alot of promise
in keeping Pancreatic Cancer away?

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markymarkfl | @markymarkfl | Oct 11, 2023
In reply to @wheatley "I initially went thru 12 FOLFIRINOX , the last one w/o oxaliplatin. About 6 months later..." + (show)
@wheatley

I initially went thru 12 FOLFIRINOX , the last one w/o oxaliplatin. About 6 months later went back on FOLFIRINOX w/o ox. Have had 10 treatments. Side effects are manageable but can anyone tell me what I am missing by not having ox as p/o my treatment?

Jump to this post

@wheatley , "can anyone tell me what I am missing by not having ox as p/o my treatment?"

I assume/hope you're "missing" the neuropathy and cold sensitivity, but not really missing it. 😉

My knowledge is very limited in this area, but my understanding of platinum agents in general (carboplatin, oxaliplatin, cisplatin) is that they help damage cancer cell DNA and its ability to repair itself, which may provide extra benefit to patients with mutations (like ATM) that hinder DNA damage repair. If you have related mutations (PALB2, BRCA, ATM) you might benefit from platinum. If you haven't had the genetic tests to identify mutations, you should ask your oncologist about those. It's one of the doorways that might open up appropriate clinical trials.

As Forrest Gump said, "That's all I know about that."

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wheatley | @wheatley | Oct 11, 2023

Thanks for the quick response. I stop 0X because of neuropathy have had genetic and genomics testing and nothing comes up. Just had a liquid biopsy done, and I am waiting for the results of that to come in.

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robee | @robee | Oct 12, 2023
In reply to @ncteacher "Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that..." + (show)
@ncteacher

Your mention of radiation supports my earlier post (somewhere on the board--here? I don't remember) that treatment options seem to vary so widely depending on which MD you see. I don't qualify for surgery and am stage 4 based on a visual check during laparoscopy. I've never been offered radiation therapy. What stage were you when you were diagnosed? It may be that radiation is reserved for patients whose cancer is limited to one site and hasn't metastasized.

Jump to this post

I am stage 4 with metastasis. Found an article about high dose radiation. Not all high dose radiation is the same and not many places offer the treatment I had. I went to Memorial Sloan Kettering in NYC/Dr Christopher Crane for 3 weeks of daily CT guided radiation . It’s been almost 5 mos and I’m feeling really good and hopeful my follow up appt in a couple weeks goes well.

No one offered me radiation. I found the research and kept bringing it up to doctors. Finally made the call myself. Treatment seems to vary so drastically for this cancer. You really have to do all the research and ask questions constantly. It’s exhausting…but it’s the only chance we have.

REPLY
1 reply
lilliejane2 | @lilliejane2 | Oct 12, 2023
In reply to @robee "I am stage 4 with metastasis. Found an article about high dose radiation. Not all high..." + (show)
@robee

I am stage 4 with metastasis. Found an article about high dose radiation. Not all high dose radiation is the same and not many places offer the treatment I had. I went to Memorial Sloan Kettering in NYC/Dr Christopher Crane for 3 weeks of daily CT guided radiation . It’s been almost 5 mos and I’m feeling really good and hopeful my follow up appt in a couple weeks goes well.

No one offered me radiation. I found the research and kept bringing it up to doctors. Finally made the call myself. Treatment seems to vary so drastically for this cancer. You really have to do all the research and ask questions constantly. It’s exhausting…but it’s the only chance we have.

Jump to this post

Hello. Thank you for the information about Sloan Kettering offering that
radiation treatment. I am so glad you are feeling very well!!

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henfayp | @henfayp | Oct 12, 2023

Did you had surgery to remove the original cancer, and did you had followed up chemo-treatment afterward?

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1 reply
lilliejane2 | @lilliejane2 | Oct 12, 2023
In reply to @henfayp "Did you had surgery to remove the original cancer, and did you had followed up chemo-treatment..." + (show)
@henfayp

Did you had surgery to remove the original cancer, and did you had followed up chemo-treatment afterward?

Jump to this post

Yes. I had the Whipple procedure on original cancer, followed by 6 months
of gemcitabine and abraxane.

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