Treatment options for pancreatic cancer stage 4?

I understand your situation of the oncologist not being of much help in finding a suitable trial. This is often the case when one is being seen by a GI oncologist whose patient population is more of those with GI cancers of the colon and stomach. They are more aware of clinical trials for those cancers than pancreatic which is considered a rare cancer and not likely to have more that a few pancreatic cancer patients under treatment.

For this reason I chose commuting to a larger medical center with a high-volume pancreas program having GI oncologists with a sub-specialty in pancreatic cancer. They are more aware of clinical trials for pancreatic cancer…if not at their institution, then at others around the country. While I was successful in finding my clinical trial using targeted therapy with a PARP inhibitor that is also being evaluated for targeting the ATM gene, there are organizations which do clinical trial searches at no charge. The Pancreatic Cancer Action Network (PanCan.org) not only has a clinical trial finder website, but they have patient case managers that work with CancerCommons.org in identifying suitable trials. Two other organizations with staff that can do searchers are EmergingMed.com associated the LetsWinPC.org and myTomorrows.com. Phone contact info is listed on their web sites.

The Abramson Cancer Center of PennMedicine in Philadelphia does a number of clinical trials using PARP inhibitors. The specialist at Penn with PARP inhibitors is Dr. Kim Reiss-Binder. MSKCC in NYC also has experience in targeting the ATM gene. Clinical trials reimburse participants for transportation costs. For trials that might be distant, there are several transportation programs administered by non-profit organizations in the USA that provide free round trip transport on corporate aircraft for the patient and one caregiver. One such program I believe is called Corporate Air Partners or Corporate Air Angels. They organize the flight and the patient needs to get to the local airport where the flight is originating from.

There are also organizations that can help with housing. So one should not limit themselves in only considering clinical trials within close proximity. Pancreatic cancer is a rare cancer so in order to get a sufficient number of patients to enroll, the studies are conducted in most instances at major metropolitan centers with experience in treating pancreatic cancer. In major metropolitan areas, you may find some infusion clinics participating but not likely in rural locations. The good news is that transportations costs are reimbursed and the principal investigator or clinical trial nurse navigator will plain what is reimbursed.

I understand your situation of the oncologist not being of much help in finding a suitable trial. This is often the case when one is being seen by a GI oncologist whose patient population is more of those with GI cancers of the colon and stomach. They are more aware of clinical trials for those cancers than pancreatic which is considered a rare cancer and not likely to have more that a few pancreatic cancer patients under treatment.

For this reason I chose commuting to a larger medical center with a high-volume pancreas program having GI oncologists with a sub-specialty in pancreatic cancer. They are more aware of clinical trials for pancreatic cancer…if not at their institution, then at others around the country. While I was successful in finding my clinical trial using targeted therapy with a PARP inhibitor that is also being evaluated for targeting the ATM gene, there are organizations which do clinical trial searches at no charge. The Pancreatic Cancer Action Network (PanCan.org) not only has a clinical trial finder website, but they have patient case managers that work with CancerCommons.org in identifying suitable trials. Two other organizations with staff that can do searchers are EmergingMed.com associated the LetsWinPC.org and myTomorrows.com. Phone contact info is listed on their web sites.

The Abramson Cancer Center of PennMedicine in Philadelphia does a number of clinical trials using PARP inhibitors. The specialist at Penn with PARP inhibitors is Dr. Kim Reiss-Binder. MSKCC in NYC also has experience in targeting the ATM gene. Clinical trials reimburse participants for transportation costs. For trials that might be distant, there are several transportation programs administered by non-profit organizations in the USA that provide free round trip transport on corporate aircraft for the patient and one caregiver. One such program I believe is called Corporate Air Partners or Corporate Air Angels. They organize the flight and the patient needs to get to the local airport where the flight is originating from.

There are also organizations that can help with housing. So one should not limit themselves in only considering clinical trials within close proximity. Pancreatic cancer is a rare cancer so in order to get a sufficient number of patients to enroll, the studies are conducted in most instances at major metropolitan centers with experience in treating pancreatic cancer. In major metropolitan areas, you may find some infusion clinics participating but not likely in rural locations. The good news is that transportations costs are reimbursed and the principal investigator or clinical trial nurse navigator will plain what is reimbursed.

Anyone that’s been through the Whipple procedure that can tell me what to expect?
I also couldn’t have chemo because my bloodwork was not good enough. They said to just rest but I feel like I should do more to bring the numbers up.

I had Whipple in Feb 2021 followed by folfirinox (12 treatments). The surgery left me wth an incision from bottom of rib cage to navel, with drains for most of the week I was in hospital. Pain was well controlled, eating was limited to clear fluids at first, as expected after this type of surgery, then graduated to puréed foods for a couple weeks. I was walking with support within a couple days. On insulin and digestive enzymes ever since as pancreas doesn’t produce any (or not enough at least). Chemo wasn’t fun but was easier than I anticipated- mainly exhaustion, low energy, some mild nausea. Hair thinned but i didn’t lose it all. Temporary cold sensitivity. Later had neuropathy develop in hands and feet which remained. Be honest about how you are feeling - medical staff had lots of tips to help and can get Dr to prescribe anti nausea meds etc. I had a port inserted for chemo- ask about getting a numbing cream to use before treatments (I used Emla)- made a world of difference for my comfort. Best part of it all was that I am still alive! Met some wonderful people. You CAN do this! Best wishes!

That is very helpful! Are you cancer free? How much of your pancreas was taken out?

I was stage 3 with tumour in the head of pancreas and spread to multiple lymph nodes. Approx one third of my pancreas was removed (would have to dig out medical notes for exact size. No evidence of disease but tumour marker has been climbing last 3 tests which indicates something may be going on. I get bloodwork and CT scans every 3 months for surveillance. So far , suspicious areas have surfaced in my thyroid and breast. Additional testing and biopsies were clear, but they continue to be monitored. I generally feel good, still not what I once was, but I am here to enjoy time with my family!

Oh no that must be disheartening. I’m stage 3 as well. CA19-9 has been going down and is 15 now. I’m supposed to do 4 more rounds of chemo. Then 3 weeks of radiation at Mayo in Rochester. Then the Whipple. Do you lose much weight after surgery?

@stageivsurvivor I noted your reply to @pendesk8 regarding clinical trials because you mentioned having the ATM gene mutation. I do as well; mine was discovered in December after we did genetic testing due to a small (DCIS) breast cancer. I haven't yet met with the med onc; that will be in a week. But I am really interested to know more about specific approaches to ATM-linked pancreatic cancer and the PARP inhibitors you mentioned. I'll do some research today, but if there's anything you'd be willing to share, I would appreciate it. Thank you!

I understand your situation of the oncologist not being of much help in finding a suitable trial. This is often the case when one is being seen by a GI oncologist whose patient population is more of those with GI cancers of the colon and stomach. They are more aware of clinical trials for those cancers than pancreatic which is considered a rare cancer and not likely to have more that a few pancreatic cancer patients under treatment.

For this reason I chose commuting to a larger medical center with a high-volume pancreas program having GI oncologists with a sub-specialty in pancreatic cancer. They are more aware of clinical trials for pancreatic cancer…if not at their institution, then at others around the country. While I was successful in finding my clinical trial using targeted therapy with a PARP inhibitor that is also being evaluated for targeting the ATM gene, there are organizations which do clinical trial searches at no charge. The Pancreatic Cancer Action Network (PanCan.org) not only has a clinical trial finder website, but they have patient case managers that work with CancerCommons.org in identifying suitable trials. Two other organizations with staff that can do searchers are EmergingMed.com associated the LetsWinPC.org and myTomorrows.com. Phone contact info is listed on their web sites.

The Abramson Cancer Center of PennMedicine in Philadelphia does a number of clinical trials using PARP inhibitors. The specialist at Penn with PARP inhibitors is Dr. Kim Reiss-Binder. MSKCC in NYC also has experience in targeting the ATM gene. Clinical trials reimburse participants for transportation costs. For trials that might be distant, there are several transportation programs administered by non-profit organizations in the USA that provide free round trip transport on corporate aircraft for the patient and one caregiver. One such program I believe is called Corporate Air Partners or Corporate Air Angels. They organize the flight and the patient needs to get to the local airport where the flight is originating from.

There are also organizations that can help with housing. So one should not limit themselves in only considering clinical trials within close proximity. Pancreatic cancer is a rare cancer so in order to get a sufficient number of patients to enroll, the studies are conducted in most instances at major metropolitan centers with experience in treating pancreatic cancer. In major metropolitan areas, you may find some infusion clinics participating but not likely in rural locations. The good news is that transportations costs are reimbursed and the principal investigator or clinical trial nurse navigator will plain what is reimbursed.