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Treatment options for pancreatic cancer stage 4?
Hi I joined on behalf of my beautiful sister in law to seek information on her behalf. It’s been a nightmare she just turned 40 and had back pain went to er and they did ct scan they said she has vessels wrapped in pancreas cancer and vessels of liver too. She has a mass behind her stomach leaning on her spine too. They said not operable. Her pain is unbearable on morphine every two hours. After 3 weeks in hospital and biopsy done confirmed pancreas was primary source. Just did 5 days of radiation pain more unbearable due to inflammation. She is very weak and always in pain. One oncologist wants to start chemo right away due to aggressiveness. She has two small children and is feeling desperate for some pain relief so she go home.
Doctors say it’s complicated because pancreas vessels and liver vessels are enveloped in cancer. Can anyone explain or give any advice what to try?
Thank you
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I had an ERCP to insert a stent prior to other treatment (stage 3, operable). It was done on an outpatient basis - completed under anesthesia but no incisions- made a big difference in my comfort level. All the best to your husband!
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1 ReactionWishing you the very best of luck!!!
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1 ReactionHave you gone to pancan.org to review all the field trials out there? They will also give you a patient navigator to help find the trials you might most fit.
Call them immediately and get their help! Our oncologists are too busy to stay on top of all of this so we must seek them out
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2 ReactionsI have posted here a couple of times about supplements. I took about 10 sessions of oxaliplatin and have been on 5 fu, campostar, and leucovorin since November 2021. Un 6 weeks ago I got treatments every 2 weeks. My cancer has gone into remission. My Ca19-9 did vary some during treatment but never went up very much. Right now it is 20. I started my journey at MD Anderson as it is only 8 hours from me. Mayo is 14 hours on a low traffic day. Other centers of excellence are farther. I live in central Mississippi.
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1 ReactionThank you for your reply. I am hoping that he too will receive some relief from this procedure.
Many blessings to you.
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1 ReactionPendesk. Prayers for you
I am inoperable do to vein involvement had radiation and some chemo
I was told there wasnt enough tissue from initial sample they got last year to do a mutation test. Does anyone know another way to find mutations?
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.
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8 ReactionsAnyone 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.
Hi all….my mother aged 65 has been diagnosed with stage 4 pdac in Feb 23….she is being given sequential gem/nab for three weeks, followed by mFolfox once in a six weeks cycle…is anyone else on a similar regime?
Great information .My husband has the ATM mutation as well .He believes he may have gotten it from Vietnam,parasite in the streams Liver Fluke.Have you or anyone else been exposed to parasites??♥️🙏