Newly diagnosed with stage 4: Is this a normal progression?

Posted by sdd3460 @sdd3460, Nov 23, 2023

My loved one was diagnosed in late August with Stage IV with moderate tumor in pancreas and two small tumor on liver. He on GemAbrax and a clinical study immunology drug. He’s tolerated the chemo well so far and enjoyed a 10% shrinkage in main tumor at first scan. Tumor marker numbers down about 75% so far. He was in exceptional health prediagnosis and is in his late 70’s. He does not want to know prognosis, so family has little guidance on how to evaluate progress. Curious what this group thinks of the results so far. In line with expectations, lagging, better than most. I know every patient is different, but against the overall population, how does this stack up?

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sounds to me like the chemo is working well,will he have surgery? (Whipple) and if so at what degree does the tumor have to shrink before he is able to have surgery? thank you and godbless

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It is hard to evaluate progress of people because as you said every patient is different. I was diagnosed with Stage IV inoperable cancer in June of 2022. I started chemo in July of last year. My CA19-9 went from 450 to 8 to 20 (last one) and my tumor in the pancreas is now not seen on CT & lung (my area of metastasis) nodules are gone and some are stable. I was only on Gemczar & Abraxane & have had 41 chemo treatments thus far. I am 73. The worst problems I have had have been the peripheral neuropathy, especially to my feet & ankle area. Knowing a prognosis at the end of June 2022 was devastating to me since I was given 2-4 months without treatment and only 11 months with treatment! I happily informed the doctor in FL who gave me that prognosis that I was still alive when I went over my 11th month. I attribute a lot to those who included me in their prayers & to the doctor in GA & his team who treat me. It took me a long time to find this group. It was difficult to find survivors or anyone going through this cancer journey, but I am happy to have discovered this site. Hope this helps some. I am sure others will answer you.

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@199

It is hard to evaluate progress of people because as you said every patient is different. I was diagnosed with Stage IV inoperable cancer in June of 2022. I started chemo in July of last year. My CA19-9 went from 450 to 8 to 20 (last one) and my tumor in the pancreas is now not seen on CT & lung (my area of metastasis) nodules are gone and some are stable. I was only on Gemczar & Abraxane & have had 41 chemo treatments thus far. I am 73. The worst problems I have had have been the peripheral neuropathy, especially to my feet & ankle area. Knowing a prognosis at the end of June 2022 was devastating to me since I was given 2-4 months without treatment and only 11 months with treatment! I happily informed the doctor in FL who gave me that prognosis that I was still alive when I went over my 11th month. I attribute a lot to those who included me in their prayers & to the doctor in GA & his team who treat me. It took me a long time to find this group. It was difficult to find survivors or anyone going through this cancer journey, but I am happy to have discovered this site. Hope this helps some. I am sure others will answer you.

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Thank you. That is tremendously helpful! Especially because your cancer marker numbers are very similar and it sounds like you are enjoying the kind of result we are praying for. I pray that you continue to be blessed with effective medical treatment and high quality of life!

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@tnt69

sounds to me like the chemo is working well,will he have surgery? (Whipple) and if so at what degree does the tumor have to shrink before he is able to have surgery? thank you and godbless

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Inoperable at this point due to Stage IV and metastasis to liver.

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@sdd3460

Inoperable at this point due to Stage IV and metastasis to liver.

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same exact thing as my sister,but our ultimate goal was to have surgery although the oncologist said it was highly unlikely, she stopped doing chemo after the 1st round (it was way to hard on her) our oncologist here said a few months at best without treatment and she is at the start of her 7th month and doing better than we all expected, just glad we still have her,she is the best sister a guy could ask for and an awesome human being! everyday we get with her is truly a blessing. glad your husband is responding well with the chemo,and glad he is tolerating it so well, good luck and god bless

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@tnt69

same exact thing as my sister,but our ultimate goal was to have surgery although the oncologist said it was highly unlikely, she stopped doing chemo after the 1st round (it was way to hard on her) our oncologist here said a few months at best without treatment and she is at the start of her 7th month and doing better than we all expected, just glad we still have her,she is the best sister a guy could ask for and an awesome human being! everyday we get with her is truly a blessing. glad your husband is responding well with the chemo,and glad he is tolerating it so well, good luck and god bless

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Thank you, that is also encouraging. I hope she continues to enjoy good results. My loved one is not my husband, but someone in my more extended family. My wife got a good laugh about me having a husband, though!

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@sdd3460

Inoperable at this point due to Stage IV and metastasis to liver.

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@sdd3460, I'm glad to hear your loved one is doing well so far. Do you mind if I ask what the clinical study immunology drug is that's being co-administered with Gem/Abrax, and if that's for a specific mutation like BRCA or PALB?

Also, this is kind of recent, long-shot stuff, but are you familiar with HAI (Hepatic Artery Infusion)? It's where surgeons implant a pump with a chemo reservoir that has a catheter directly to one of the arteries that feeds the liver.

This context of this video:
https://youtu.be/srP9mZVGuec?si=BeC5aJk-H4a5ico5

is for mets to liver from colorectal cancer and bile duct cancer but _might_ be applicable to pancreatic cancers with the right surgeon/institution.

The video link above features Dr. Michael Cavner, who did his fellowship at MSKCC, and describes how the work there expanded as those fellows graduated and moved to new centers.

I noticed that a fairly new/young surgeon at Mayo Jacksonville, Dr. Katherine Poruk at lists HAI and Whipple among procedures she performs. She did her fellowship at MSKCC and co-published several papers with Dr. Christopher Wolfgang during her residency at Johns Hopkins, so she or someone with similar background might be a good person to discuss options with.
https://www.mayoclinic.org/biographies/poruk-katherine-m-d/bio-20545266

In Dr. Cavner's video, he mentions the importance of a pre-infusion saline test to make sure the chemo is _not_going to the pancreas (context again being to treat a colorectal met to the liver), but for someone with a tumor also in the pancreas, it might actually be desired and doable.

I had only read of direct arterial infusion for pancreatic cancers in rats, but they were able to obtain chemo concentrations in the pancreas with 1/300th the dose of what they needed for conventional systemic chemo through a port while minimizing systemic side effects.

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@sdd3460

Thank you, that is also encouraging. I hope she continues to enjoy good results. My loved one is not my husband, but someone in my more extended family. My wife got a good laugh about me having a husband, though!

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lol 🤣. . sorry I guess I was reading to fast again or just confuse,I must of mixed something up

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@199

It is hard to evaluate progress of people because as you said every patient is different. I was diagnosed with Stage IV inoperable cancer in June of 2022. I started chemo in July of last year. My CA19-9 went from 450 to 8 to 20 (last one) and my tumor in the pancreas is now not seen on CT & lung (my area of metastasis) nodules are gone and some are stable. I was only on Gemczar & Abraxane & have had 41 chemo treatments thus far. I am 73. The worst problems I have had have been the peripheral neuropathy, especially to my feet & ankle area. Knowing a prognosis at the end of June 2022 was devastating to me since I was given 2-4 months without treatment and only 11 months with treatment! I happily informed the doctor in FL who gave me that prognosis that I was still alive when I went over my 11th month. I attribute a lot to those who included me in their prayers & to the doctor in GA & his team who treat me. It took me a long time to find this group. It was difficult to find survivors or anyone going through this cancer journey, but I am happy to have discovered this site. Hope this helps some. I am sure others will answer you.

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Which center did you receive treatment at

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@sdd3460

Thank you. That is tremendously helpful! Especially because your cancer marker numbers are very similar and it sounds like you are enjoying the kind of result we are praying for. I pray that you continue to be blessed with effective medical treatment and high quality of life!

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Thankyou for your post! This is extremely encouraging. My husband was diagnosed in October and our journey has just begun. We are staying positive. Your story brings more hope and positivity. Thankyou so much for your words of encouragement 🙏🙏. Keep up the fight.!❤️

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