45 Y old husband got diagnosed with stage 4 pancreatic cancer

Now that you have some feedback from others, what are the top two or three questions that are just bothering you? They can be anything. Remember, the only bad question is the one not asked.

1. I did apply for financial assistance through Mayo(I dont know how his insurance would work with Mayo clinic), anyone went through that?
2. Clinical trial! Anyone with any outcome?
3. Genetic testing. He’s scheduled to have his done. Im worry for my kids to have this in their genes.
It really does make me feel good to be in this group. Thank you all for your support.

I was diagnosed with pancan 3 years ago. I did genetic testing as well. Found that I was brca2. My 37 yr old daughter inherited it but 41 son did not. My daughter choose to have a double mastectomy and a historectomy as the chances for cancer would be high. I had a Whipple at Duke then folfirinox and cisplatin a year later. The platinum drugs really beat down the cancer especially with brca2. In my case it was better to know on genetic testing than not know.
Your road will have many twists and turns but stay strong as my wife has done for me. I hope his cancer will be like mine as I continue to outrun it and live my life. Knowing that you can beat it regardless of the statistics is half rhe battle.

PS: I take Lynparza oral Chemo every day now to keep it beat down and it seems to be working great as my numbers continue to improve.

@margaretpaluch
I see a response about genetic testing, but did you receive any additional input on financial assistance through Mayo or clinical trials? I do not know a lot about either. I was hoping others with more knowledge might respond, so we call all could learn. Please let me know. Thanks.

No I didn’t. I will share info once I have it.

If you do a search for "clinical trials" in the Pancreatic Support group, it should come up with a list of previous discussions on clinical trials. Please let me know if that helps.

After genetic testing revealed a germline genetic mutation driving my pancreatic cancer, I enrolled in a clinical trial targeting the BRCA2 mutation and now the longest pancreatic patient in the world on it at 10 years 8 months and coming up on 13 years survival of stage IV.

There are several methods to search for clinical trials; the easiest way is to contact the Pancreatic Cancer Action Network (#PanCAN.org) and speak with a case manager by calling 877.272.6226, M-F, 7:00am-5:00pm PT. The service is free. There are other clinical trial sites that are self serve and the most comprehensive one is clinicaltrials.gov. LetsWinPC.org and TriCanHealth.com have trial finders specific only to pancreatic cancer making a self-search a bit easier.

Two other search firms are ancora.ai and my tomorrows.com. They start off as self-search but have a method to then contact personnel to answer questions and narrow down the search.

Immunotherapies are the future for cancer treatment. While it works for other types of cancers, pancreatic cancer is the exception because it has immunologically cold tumors making the tumors difficult to be recognized by one’s immune system cells. Researchers have recently found methods to convert immunologically cold tumors to immunologically hot tumors that can then be seen by immune system cells such as dendritic cells and tumor infiltrating lymphocytes. There were a number of presentations at the recent American Academy of Clinical Research (AACR) meeting last month and there will be a section on immunotherapies at the upcoming American Society of Clinical Oncology (ASCO) meeting the end of this.

Dendritic cell vaccine therapy is an area of increasing focus…particularly in pancreatic cancer. With pancreatic cancer, the US has been behind in developing clinical trials. Some laboratories are using dendritic cell therapy techniques for pancreatic cancer. Germany is a leader and a laboratory founded by Frank Gansuage MD-PhD is treating pancreatic cancer patients. I have spoken to a Canadian patient who has achieved N.E.D. a year after receiving therapy at LDG Laboratories. This technique is not covered by insurance. Someone recently inquired as to the procedure and the price. It takes about 12-14 days in Germany and the price starts at around €17,000/USD $19,290. Dr.Gansauge replies quickly to inquires. Read the information on the website first for more background on the procedure as many questions will be answered there.

Look into. LDG Laboratories/ Dr. Frank Ganssuge
info@labor-gansauge.de

+49.(0) 8151 368.6983

Website: https://labor-gansauge.de

They are in Berg, Germany near Munich.

This is considerably less than Intertumoral immunotherapy offered at the Williams Cancer Clinic in Cabo San Lucas (not yet FDA approved and why the procedure is being done in a clinic there) and Cryosurgery to stimulate a dendritic cell vaccine response by Gary Onik, MD. Dr. Onik is the principal investigator of a phase II clinical trial for patients with solid tumors including pancreatic. The trials which are closed to enrollment as they are being completed now are in Miami Lakes, FL and Scottsdale, AZ. Results may be available later this year and possibly an expanded trial will be conducted. The procedure is available as fee-based and not covered by insurance as yet. The cost for the hospital procedure and the interventional cryosurgical procedure is $135,000.

This is very good information! I just talk to the case manager from Pancan. Waiting for the resources. Were waiting on NSA results to be back and genetics testing is schedule in couple of days.
Unfortunately hes not the candidate for the surgery, starting chemo treatment soon and hoping to be able to start or to be a candidate for clinicial trials once we have the results back.
Your story is truly inspiring.
Thank you

Wow, @stageivsurvivor we are so lucky to have you as a 10 yr survivor with all of the scientific information you provide us. I’ve been reading and sometimes commenting on this board on a nearly daily basis since my cancer metastasized in late 2023. I don’t know how many years it took scientists to come up with a potential cure for those with the BRCA or PALB mutations, but it does give hope that further research could result in a cure for the rest of us. Meanwhile we will continue using all of the life lines for extensions that we are currently given until a cure for us is discovered. Please keep up the good work for your own health and for keeping us informed.

June 18 will mark 13 years survival from when I got my diagnosis. The BRCA1 gene was discovered in 1994 and BRCA2 in 1995. Shortly after researchers be a developing PARP inhibitors. long before the BRCA1 and BRCA2 mutations were implicated in causing breast cancer-later implicating them also in male breast, prostate, ovarian and pancreatic cancers. The development of the first PARP inhibitor began in 1971. Researchers then began collaborations on using this PARP inhibitor on the BRCA mutations discovered in the mid ‘90’s.

There were clinical trials with Olaparib (AstraZeneca of the UK) run by the Institute for Cancer Research in the UK. This was somewhere around 2005-2006 on breast and ovarian. Pancreatic came after that. The first clinical trial in the US I am aware of was done by my oncologist Susan Domchek of the Abramson Cancer Center at the Hospital of the University of Pennsylvania/PennMedicine in 2013. It was a pilot study of two BRCA2 Pancretic cancer patients being administered Olaparib to determine feasibility a PARPi could be efficacious. The data showed it was effective and the results presented at the ASCO 2014 annual meeting. I found the newly published abstract just put up on the ASCO site making inference of a possible phase II study. I contacted PennMedicine before the trial was publicly announced and how I became the first U.S. patient to enroll. My first oncologist wanted me to remain on Full-dose Folfirinox three more months before entering the trial to gain maximum benefit. I then entered the trial and now the longest patient in the world still on it since October 2014.

AstraZeneca receives approval for Olaparib to treat BRCA1/BRCA2 mutated patients on 12/27/2019. The drug I am on is Rubraca that received approval for ovarian and prostate cancers. With the market very small for pancreatic cancer, the developer of Rubraca determined they could not obtain a ROI in trying to seek FDA approval. I receive it under permission of the FDA and the support of the current owner holding the development and marketing rights of the drug.