1. < Pancreatic Cancer

Chemo not working. What to do next??? Please help!!!

Posted by helenar @helenar, Oct 30, 2022

So on Thursday, after 3months of treatment, I was informed by my oncologist that the Gem/Abraxane is also NOT working.
The mass in my pancreas grew with 8mm, the lesions in my liver stayed relatively stable, with one of the two showing growth of 2mm

I asked if they can do radiation and she said she will come back to me.

Can they do radiation? What about ablation radiation?? Surely there must be something more we can do????

Please help!!!!

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

dubbscopper | @dubbscopper | Oct 31, 2022

I keep asking the same thing- they changed chemo but I would rather go straight to the radiation ...

REPLY
cathyras | @cathyras | Oct 31, 2022

keep asking and seek a second opinion. I had radiation and chemo. My tumor was gone(it didn't show on PET. So I stopped two months later it was back but not very large. I asked about options. My oncologist (temporary mine is on maternity leave) said he did not think they could not do more radiation. But I pushed and he put me in the tumor board. I asked about surgery and cryoablation. No on the ablation because nobody had done it. My insurance is Kaiser. I had a call from the radiation oncologist and he said we could try it. Keep advocating for yourself. I am going back on chemo next week.

REPLY
1 reply
abrownca | @abrownca | Oct 31, 2022
In reply to @cathyras "keep asking and seek a second opinion. I had radiation and chemo. My tumor was gone(it..." + (show)
@cathyras

keep asking and seek a second opinion. I had radiation and chemo. My tumor was gone(it didn't show on PET. So I stopped two months later it was back but not very large. I asked about options. My oncologist (temporary mine is on maternity leave) said he did not think they could not do more radiation. But I pushed and he put me in the tumor board. I asked about surgery and cryoablation. No on the ablation because nobody had done it. My insurance is Kaiser. I had a call from the radiation oncologist and he said we could try it. Keep advocating for yourself. I am going back on chemo next week.

Jump to this post

Hi @cathyras. I read your post and noticed that your insurance is Kaiser, which I also have. Have you been happy with your treatments/diagnosis? Whenever anyone finds out I have Kaiser, they give me the pity treatment. So far, I have not had any problems. I have done alot of research to compare my ongoing treatments and have even gotten a second opinion from UCSF. I totally agree, that you have to advocate yourself.

REPLY
1 reply
stageivsurvivor | @stageivsurvivor | Nov 1, 2022

After first line chemotherapy regimens of (m)Folfirinox and Genzar/Abraxane are no longer effective, there are second, third and fourth-line chemo drug combinations available.

CHEMOTHERAPY PROTOCOLS FOR PANCREATIC CANCER
https://www.cancertherapyadvisor.com/wp-content/uploads/sites/12/2020/03/Pancreatic-Adenocarcinoma-0320.pdf
For metastatic disease to the liver and surgical bed, ablation in the form of cryoablation and Nanoknife/IRE (irreversible electroporation) may be options. Treatment of liver mets may be possible using Y-90 (Yttrium 90 radiotherapy) where albumin and then a radioisotope is perused into the liver.
https://interventionalnews.com/y90-radioembolization-metastatic-pancreatic-cancer/
In later stage pancreatic cancer, clinical trials offer the patient potential of better outcomes through access to new drug compounds not yet available to the general patient population.

Ablation
https://letswinpc.org/promising-science/2022/06/30/ablative-smart-radiotherapy-advanced-pancreatic-cancer/
https://letswinpc.org/promising-science/2020/06/19/study-nanoknife-ire-technology/
https://www.medpagetoday.com/meetingcoverage/astro/101459
Precision Medicine of genetic testing using Next Generation Sequencing (NGS) and or liquid biopsy to detect possible somatic (spontaneous);or germ line (mutations) is important for determining if targeted therapy is available or in finding a suitable clinical trial. After my second chemo regimen was beginning to wane, genetic testing led to my finding a clinical trial resulting in achieving NED status in 2016 after metas disease to the liver.

Genetic Testing
https://pancan.org/news/what-you-need-to-know-about-genetic-and-molecular-testing/
https://pancan.org/news/lets-talk-about-genetic-and-biomarker-testing/
As others responding to this post mention, advocating for better treatment is essential. One needs to be prepared when encountering resistance for one’s private health insurer. Fortunately for me, the private insurance was outstanding, allowed me to obtain treatment wherever necessary and paid for genetic testing and everything thing else. The clinical trial costs and transportation were covered by the trial sponsor.

Lastly, do not hesitate to obtain additional opinions. If you feel your current care team is not meeting your expectations, consult with other pancreatic cancer oncologists who have the depth and breadth in treating pancreatic cancer that the average GI specialist won’t have. When inquiring about clinical trials, my experience has been that a GI oncologist whose sub-specialty is treating cancers of the pancreas is more likely to know of clinical trials than a regular GI specialist whose practice generally consists of few pancreatic cancer patients.

The Pancreatic Cancer Action Network can be of help in providing a list of NCI designated tertiary-level centers of excellence in cancer treatment and the names of pancreatic cancer oncologists and interventional radiologists and surgeons experienced with ablative techniques, Y-90 and other chemotherapy combinations less widely used. PanCan.org can be reached at 877.272.6226, M-F, 7:00am-5:00pm PT.

REPLY
2 replies
cathyras | @cathyras | Nov 1, 2022
In reply to @abrownca "Hi @cathyras. I read your post and noticed that your insurance is Kaiser, which I also..." + (show)
@abrownca

Hi @cathyras. I read your post and noticed that your insurance is Kaiser, which I also have. Have you been happy with your treatments/diagnosis? Whenever anyone finds out I have Kaiser, they give me the pity treatment. So far, I have not had any problems. I have done alot of research to compare my ongoing treatments and have even gotten a second opinion from UCSF. I totally agree, that you have to advocate yourself.

Jump to this post

I love Kaiser. Our plan through my husband's job is excellent. It pretty much covers everything after we meet the total out of pocket. I have had a few hiccups but I think that is mostly because of staff shortages. All of the infusion nurses are so wonderful and I love my oncologist.

I also love my primary care doctor because she kept on going trying to figure out why I was having this pain. She ordered a CT because she thought it was something to do with my kidney. That's when they found it. Stage 2b. If she wouldn't of kept going it probably would be a lot worse for me.

REPLY
helenar | @helenar | Nov 2, 2022
In reply to @stageivsurvivor "After first line chemotherapy regimens of (m)Folfirinox and Genzar/Abraxane are no longer effective, there are second,..." + (show)
@stageivsurvivor

After first line chemotherapy regimens of (m)Folfirinox and Genzar/Abraxane are no longer effective, there are second, third and fourth-line chemo drug combinations available.

CHEMOTHERAPY PROTOCOLS FOR PANCREATIC CANCER
https://www.cancertherapyadvisor.com/wp-content/uploads/sites/12/2020/03/Pancreatic-Adenocarcinoma-0320.pdf
For metastatic disease to the liver and surgical bed, ablation in the form of cryoablation and Nanoknife/IRE (irreversible electroporation) may be options. Treatment of liver mets may be possible using Y-90 (Yttrium 90 radiotherapy) where albumin and then a radioisotope is perused into the liver.
https://interventionalnews.com/y90-radioembolization-metastatic-pancreatic-cancer/
In later stage pancreatic cancer, clinical trials offer the patient potential of better outcomes through access to new drug compounds not yet available to the general patient population.

Ablation
https://letswinpc.org/promising-science/2022/06/30/ablative-smart-radiotherapy-advanced-pancreatic-cancer/
https://letswinpc.org/promising-science/2020/06/19/study-nanoknife-ire-technology/
https://www.medpagetoday.com/meetingcoverage/astro/101459
Precision Medicine of genetic testing using Next Generation Sequencing (NGS) and or liquid biopsy to detect possible somatic (spontaneous);or germ line (mutations) is important for determining if targeted therapy is available or in finding a suitable clinical trial. After my second chemo regimen was beginning to wane, genetic testing led to my finding a clinical trial resulting in achieving NED status in 2016 after metas disease to the liver.

Genetic Testing
https://pancan.org/news/what-you-need-to-know-about-genetic-and-molecular-testing/
https://pancan.org/news/lets-talk-about-genetic-and-biomarker-testing/
As others responding to this post mention, advocating for better treatment is essential. One needs to be prepared when encountering resistance for one’s private health insurer. Fortunately for me, the private insurance was outstanding, allowed me to obtain treatment wherever necessary and paid for genetic testing and everything thing else. The clinical trial costs and transportation were covered by the trial sponsor.

Lastly, do not hesitate to obtain additional opinions. If you feel your current care team is not meeting your expectations, consult with other pancreatic cancer oncologists who have the depth and breadth in treating pancreatic cancer that the average GI specialist won’t have. When inquiring about clinical trials, my experience has been that a GI oncologist whose sub-specialty is treating cancers of the pancreas is more likely to know of clinical trials than a regular GI specialist whose practice generally consists of few pancreatic cancer patients.

The Pancreatic Cancer Action Network can be of help in providing a list of NCI designated tertiary-level centers of excellence in cancer treatment and the names of pancreatic cancer oncologists and interventional radiologists and surgeons experienced with ablative techniques, Y-90 and other chemotherapy combinations less widely used. PanCan.org can be reached at 877.272.6226, M-F, 7:00am-5:00pm PT.

Jump to this post

Thank you so much for this information!!! I was informed yesterday that I am going to get radiation for my pancreas and Prof Eduard Jonas (part of my team) will do the op on my liver to remove the 2 lesions. He is starting a trial early January, and he will then treat me and monitor me, and when the mass in the pancreas has reduced a little, he will do the op to remove the tumor.

Praise God for this news. This gives me extra power to keep on fighting and believing! There surely is power in prayer!!!!!

God bless all
I will keep you updated
♥

REPLY
dnay6872 | @dnay6872 | Nov 2, 2022
In reply to @stageivsurvivor "After first line chemotherapy regimens of (m)Folfirinox and Genzar/Abraxane are no longer effective, there are second,..." + (show)
@stageivsurvivor

After first line chemotherapy regimens of (m)Folfirinox and Genzar/Abraxane are no longer effective, there are second, third and fourth-line chemo drug combinations available.

CHEMOTHERAPY PROTOCOLS FOR PANCREATIC CANCER
https://www.cancertherapyadvisor.com/wp-content/uploads/sites/12/2020/03/Pancreatic-Adenocarcinoma-0320.pdf
For metastatic disease to the liver and surgical bed, ablation in the form of cryoablation and Nanoknife/IRE (irreversible electroporation) may be options. Treatment of liver mets may be possible using Y-90 (Yttrium 90 radiotherapy) where albumin and then a radioisotope is perused into the liver.
https://interventionalnews.com/y90-radioembolization-metastatic-pancreatic-cancer/
In later stage pancreatic cancer, clinical trials offer the patient potential of better outcomes through access to new drug compounds not yet available to the general patient population.

Ablation
https://letswinpc.org/promising-science/2022/06/30/ablative-smart-radiotherapy-advanced-pancreatic-cancer/
https://letswinpc.org/promising-science/2020/06/19/study-nanoknife-ire-technology/
https://www.medpagetoday.com/meetingcoverage/astro/101459
Precision Medicine of genetic testing using Next Generation Sequencing (NGS) and or liquid biopsy to detect possible somatic (spontaneous);or germ line (mutations) is important for determining if targeted therapy is available or in finding a suitable clinical trial. After my second chemo regimen was beginning to wane, genetic testing led to my finding a clinical trial resulting in achieving NED status in 2016 after metas disease to the liver.

Genetic Testing
https://pancan.org/news/what-you-need-to-know-about-genetic-and-molecular-testing/
https://pancan.org/news/lets-talk-about-genetic-and-biomarker-testing/
As others responding to this post mention, advocating for better treatment is essential. One needs to be prepared when encountering resistance for one’s private health insurer. Fortunately for me, the private insurance was outstanding, allowed me to obtain treatment wherever necessary and paid for genetic testing and everything thing else. The clinical trial costs and transportation were covered by the trial sponsor.

Lastly, do not hesitate to obtain additional opinions. If you feel your current care team is not meeting your expectations, consult with other pancreatic cancer oncologists who have the depth and breadth in treating pancreatic cancer that the average GI specialist won’t have. When inquiring about clinical trials, my experience has been that a GI oncologist whose sub-specialty is treating cancers of the pancreas is more likely to know of clinical trials than a regular GI specialist whose practice generally consists of few pancreatic cancer patients.

The Pancreatic Cancer Action Network can be of help in providing a list of NCI designated tertiary-level centers of excellence in cancer treatment and the names of pancreatic cancer oncologists and interventional radiologists and surgeons experienced with ablative techniques, Y-90 and other chemotherapy combinations less widely used. PanCan.org can be reached at 877.272.6226, M-F, 7:00am-5:00pm PT.

Jump to this post

Thank you so much for your post.

I am heartbroken and just found out my brother who has pancreatic cancer, was told it has spread to his liver and has two small dots on his liver that are each 1 cm. They are unable to operate on him due to the tumor wrapping itself around his organs. The treatment so far has been Chemo, and radiation.

He currently is being seen by Dr. Truty Mayo/MN and the Doctors who are treating him in Ohio told him this news today and that he has 6 months to live.

I am asking my brother to wait to talk to Dr. Truty and this other Doctor told him a year ago he had 6 months to live and to please wait to hear from Mayo MN.

They do not have the reports back to tell him if the tumor is dead or not and he does not have the results of the CA-19-9 bloodwork.

I do not know how to feel and I do not understand why the Doctors in Ohio would tell him this when there is still hope.

I guess, I am asking if I am delusional?

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3, 2022
In reply to @dnay6872 "Thank you so much for your post. I am heartbroken and just found out my brother..." + (show)
@dnay6872

Thank you so much for your post.

I am heartbroken and just found out my brother who has pancreatic cancer, was told it has spread to his liver and has two small dots on his liver that are each 1 cm. They are unable to operate on him due to the tumor wrapping itself around his organs. The treatment so far has been Chemo, and radiation.

He currently is being seen by Dr. Truty Mayo/MN and the Doctors who are treating him in Ohio told him this news today and that he has 6 months to live.

I am asking my brother to wait to talk to Dr. Truty and this other Doctor told him a year ago he had 6 months to live and to please wait to hear from Mayo MN.

They do not have the reports back to tell him if the tumor is dead or not and he does not have the results of the CA-19-9 bloodwork.

I do not know how to feel and I do not understand why the Doctors in Ohio would tell him this when there is still hope.

I guess, I am asking if I am delusional?

Jump to this post

@dnay6872 this is such tough news to get about your brother. Has he been offered comfort care, often called palliative care? Or hospice?

REPLY
mamarina | @mamarina | Nov 4, 2022

After sudden stomach issues for a month and change in urine color I got blood work that showed liver enzymes thru the roof signaling a blockage
Only to discover in April Im stage 3 hospitalized then got biliary stent and duedenum stent so food and bile could pass. Lost 23lbs .. Was at first considered borderline resectable Then did chemo the folfrinox landed me back in hospital .. kicked my butt so struggled thru 3 full gemcetibine/abraxane then even tho it shrunk some the tumor board deemed me inoperable because of veinous involvement
So I requested the proton radiation therapy. I had 5 days of high dose mrgrt , mri guided at miami cancer institute sept 26-30th
So now its a wait and see until
next month how results of that are going.. being a none smoker non drinker , ate well etc Beat breast cancer from 6 years ago ( pet scan was clear in April , except for this damn pancreatic tumor
its quite devastating to wrap my head around
But please ask what other options. Be persistent. Email Dr , call dont wait for next appt unless its in a few days ask about Radiation, nano knife, trials , there really arent any immuno therapies yet I dont think
Lets all stay in touch. 🙏🏻

REPLY
1 reply
pendesk8 | @pendesk8 | Nov 5, 2022
In reply to @dnay6872 "Thank you so much for your post. I am heartbroken and just found out my brother..." + (show)
@dnay6872

Thank you so much for your post.

I am heartbroken and just found out my brother who has pancreatic cancer, was told it has spread to his liver and has two small dots on his liver that are each 1 cm. They are unable to operate on him due to the tumor wrapping itself around his organs. The treatment so far has been Chemo, and radiation.

He currently is being seen by Dr. Truty Mayo/MN and the Doctors who are treating him in Ohio told him this news today and that he has 6 months to live.

I am asking my brother to wait to talk to Dr. Truty and this other Doctor told him a year ago he had 6 months to live and to please wait to hear from Mayo MN.

They do not have the reports back to tell him if the tumor is dead or not and he does not have the results of the CA-19-9 bloodwork.

I do not know how to feel and I do not understand why the Doctors in Ohio would tell him this when there is still hope.

I guess, I am asking if I am delusional?

Jump to this post

There is a new treatment out by rain rharma.called Milademetan.It has been used on all kinds of cancers and is showing a 30% reduction of tumors.See if he can get it.

REPLY
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