Our blog features educational information and personal perspectives relevant to the hereditary cancer community.
Education > Our Blog > Why I Chose Immunotherapy for Pancreatic Cancer
Why I Chose Immunotherapy for Pancreatic Cancer

February 07, 2018

Why I Chose Immunotherapy for Pancreatic Cancer

by David Dessert

I was diagnosed with stage 3 unresectable pancreatic cancer at age 48 after 5 months of ever-increasing back and abdominal pains. After a non-standard treatment with Gemzar/Cisplatin chemotherapy (because of my BRCA2 mutations), followed by chemoradiation, and 12 months later the removal of my pancreatic tumor, my surgeon told me that I did not need any more treatment. I knew, however, that 75% of pancreatic cancer survivors go on to have a recurrence after surgery. Based on my surgeon’s recommendation, I could either do nothing or participate in a clinical trial (NCT01088789) as added insurance against recurrence.

The G-VAX immunotherapy vaccine had been tested before, but not with much success. But it did seem to help some people, and this trial is an attempt to expand its effectiveness by adding another component to the treatment. I liked that the vaccine was developed using a BRCA2-deficient cell line, perhaps making it more like my own BRCA2-deficient tumor.

This clinical trial is performed at Johns Hopkins in Baltimore and I am in Texas. However, the treatments are only twice per year. At each treatment, I get an IV of Cytoxan on day 1 and then 6 subcutaneous vaccine shots on day 2. I can do the entire treatment with a single overnight stay in Baltimore, although I must travel by light rail, plane, and car to get there and get home.

After each treatment, I get flu-like symptoms: fever, head and body aches, and fatigue that start a few hours after the injections. The symptoms last about 36 hours and then I’m back to normal, except for rashes at the injection sites that last a few weeks. Occasionally and out-of-the-blue I get one-day, flu-like symptoms just like when I get the shots and I must sleep for a day. Is this my immune system wiping out a new cancer? Is it reacting to something I’ve eaten? What is my immune system fighting? Will this happen for the rest of my life?

It been over 5 years since my surgery. I have been in this G-VAX vaccine trial since then, and it runs for another 5 years or until I have a recurrence. Insurance coverage of the scans is always down-to-the-wire. At 5 years after diagnosis, I am no longer allowed 2 scans per year. My insurance always initially denies coverage, but being in a clinical trial, it has always been approved. As Congress debates repealing or removing protections from the Affordable Care Act, I am concerned about possible re-introduction of pre-existing conditions and high-risk pools. Does my participation in a clinical trial put me at risk of losing out on affordable insurance? Even though it’s been more than 5 years since I had any detectable cancer, I cannot say that I have not been treated for cancer. That’s what the trial is about.

The marketing campaign for immunotherapy says that you are “harnessing the power of your own immune system.” More like, “unleashing.” It removes some of the checks and blocks that keep your immune system from attacking your own body. What if it is unleashed on some of my healthy organs? Are the joint pains I’m experiencing a part of normal aging or is my immune system geared up? Is the treatment related to my unexpected cardiac problems?  For help understanding these questions and more information on immunotherapy treatments including monoclonal antibodies, immune check point inhibitors, non-specific immunotherapies and cancer vaccines, check out the Immunotherapy section on the FORCE website. You can also search for pancreatic cancer treatment clinical trials using our HBOC Research Study Search Tool.

I chose immunotherapy because the alternative was to do nothing and hope I was in the 25% without a recurrence. I chose a clinical trial to advance the science into cancers my family may someday face.

David is a pancreatic cancer survivor with a BRCA2 deleterious mutation and participates daily in pancreatic cancer message boards, providing a perspective as one of the few long-term survivors. He is co-moderator of The CancerForums pancreatic cancer forum, helping patients and caregivers understand their options. He also volunteers with FORCE as a peer navigator and recently represented FORCE as a consumer reviewer at the DoD Peer Reviewed Cancer Research Program (PRCRP).

Posted in: Men With Mutations, Cancer Treatment
Tags: BRCA2, HBOC, Pancreatic Cancer, Cancer Research, Immunotherapy, Immunooncology, Pancreatic Cancer Treatment

7 Comments

June 26, 2018

Laila Vaziralli says:
My mother is due for her whipple day after, i live on India though. I wonder if we have immunotherapy for pancreatic cancer in india

Reply


December 11, 2018

Harry H says:
My 85 year old mother was diagnosed on December 5, 2018 with stage 4 pancreatic cancer. The cancer has spread to her liver, gallbladder, stomach and is blocking hepatic and common bile ducts. She is just receiving palliative care. Pill and liquid morphine. She is receiving hospice care. Doctors aren’t offering any hope. Is there anything we can do, such as immuno-therapy? Thank you for any help.

Reply


December 19, 2018

Sue Friedman says:
Hi Harry, I'm sorry about your mom. If her cancer was tested for a change known as "microsatellite instability" or MSI and came out as MSI-high, then she would meet criteria to receive Keytruda, which is FDA-approved to treat any MSI-high cancer. You might want to ask her oncologist if that was done. Most pancreatic cancers are not MSI high but about 10% may test for this marker. Unfortunately, many clinical trials have an age limit of 75. If you email us at: info@facingourrisk.org, we are happy to see if there are clinical trials for which she qualifies. Warm regards, Sue Friedman, Executive Director

Reply

October 27, 2018

Michael says:
Hi all.. I'd like to know if clinical trials are available for non-US citizens. Many thanks..

Reply


October 30, 2018

Sue Friedman says:
Hi Michael, Yes, absolutely! You can use https://www.clinicaltrials.gov to find international pancreatic cancer treatment studies.

Reply

May 6, 2018

Andrea says:
My dad was diagnosed with pancreatic cancer Friday and he has an appointment on Tuesday to see where we stand. I am looking for out of the box treatments due to the fact I lost my Aunt a year ago to the same cancer. She did chemo and never got to the radiation before it spread. Any help, advice and information is greatly appreciated.

Reply


April 21, 2018

Linda says:
I have just been diagnosed with pancreatic cancer that has spread to my liver and maybe colon. Three months ago I felt wonderful. Had no idea this was occurring in my body. I am 68 but look and act very young. Exercise No smoking ever or drinking. Weight was 120. Down 10 pounds in 2 months. Thought I had gallstones which I do as well. Going to JH as soon as possible. Maybe 3 weeks. Want to look into the vaccine therapy. Any suggestions for me

Reply


April 24, 2018

Sue Friedman says:
Hi Linda, I'm so sorry about your diagnosis. You might want to consider also seeing Dr. Kim Reiss Binder at University of Pennsylvania. I know that she has a PARP inhibitor clinical trial and much expertise in treating not just pancreatic cancer but hereditary pancreatic cancer. Feel free to email me at: suefriedman@facingourrisk.org if you would like more information. Thinking of you! XO, Sue

Reply

December 22, 2018

Millie Hue says:
It got me when you said that there have been findings that 25% of the patients who tried this treatment has no reoccurrence. I will suggest this to my uncle to get him treated with this as well so that he can finally live a normal life. He just found out that he might be positive with this illness because of researching the symptoms which are present in him since last year. Now, we need to find a medical facility that can offer this in case he is interested.

Reply


August 23, 2018

Stacy says:
My father has been diagnosed with Pancreatic Cancer this past month that has metastasized to other areas of the body. This has all happened so fast and I am so confused as to why they aren't helping him. We just returned from Vanderbilt to see if there was any treatment there and they cant help him due to his platelet count and the fact that he is only 4 years into remission from his previous cancer. My Dad is a fighter and I know there has to be something out there for pancreatic cancer.

Reply


November 30, 2018

Susan says:
Hi, my mom was diagnosed with pan cancer last nov of 2017. she had stage 1 colon cancer ..had surgery in oct 2014 she has had chemo, radiation, surgery to remove blockage..is on eliquis for p.e. in her lungs..she was told it spread to her liver and lungs..she u just turned 79..she is 85 pounds..my question...she is now on immunotherapy and will get her 3 treatment next week...she has back pain and after she eats g has stomach pain..i think i goes away..me and my sister dont know what to do when shes in pain..they give her percocet.. but think she needs a stronger drug..but we had to fight for the 10mg..we are really nervous about what will happen next..so much anxiety between all of us esp.my mom...any info is appreciated..thank you

Reply


June 18, 2018

Natasha Carr says:
My husband has pancreatic cancer and was diagnosed in 2015, had the whipple surgery, chemo and radiation theraphy. We now have a reoccurrence in the same surgical area, along with a tumor that is putting pressure on his blood vessels. We are now told that his only option will be chemotheraphy, no further surgery or radiation. We are interested in immuno-therapy and/or clinical trials. They told us without chemo therapy he would only have approx. 5 months to live. Can you make any suggestions.

Reply


June 18, 2018

Sue Friedman says:
Hi Natasha, I'm so sorry to hear about your husband. Can you send me an email at: suefriedman@facingourrisk.org and I would be happy to help you navigate clinical trials. I would need some additional information about your husband's situation. Some other resources that may be helpful include: -Has your husband had tumor testing? This can help identify targets that may respond to targeted therapy. You can read more about that <a href="https://www.facingourrisk.org/understanding-brca-and-hboc/information/cancertreatment/tumor-testing/basics/companion-diagnostic-testing.php#text" target="_blank" rel="noopener nofollow">here</a>: -check out <a href="https://www.facingourrisk.org/research-clinical-trials/research-studies-search/search-results.php?cancer_type=pancreatic&study_type=treatment&stage=metastatic&test_marker=&keyword=immunotherapy" target="_blank" rel="noopener nofollow">this link</a> for a partial list of clinical trials using immunotherapy for pancreatic cancer

Reply

March 25, 2018

Debbie says:
I am very interested in clinical trials. I have zpacrested cancer that metastasized in th Livet and stomach. I haven't started any tratmentz yet.

Reply


October 18, 2018

Robert Santoro says:
Do you have to ask your doctor to be recommended to one of these immunotherapy clinical trials or do they recommend you to one, if you qualify and the chemo is not working?

Reply


July 18, 2018

Sandee says:
Hi. My 41 year old nephew was duagnosed with stage 3 pancreatic cancer in Nov 2017. Had 3 different chemos and then in April 2018 had surgery to remove the cancer from pancreatic head, duodenum, and tgey biopsied 3 lymph nodes and 11 cane back positive. 3 weeks ago he had a PET scan and it has now spread to his chest, liver and bladder. They started his first of Keytruda last Wednesday and he continues to severe back, chest and abdominal pain and is now taking Oral Morphine around the clock with Oxycodone for breakthrough pain. I am a nurse and am not familiar with the Immunotherapy. Would appreciate any information or recommendations for him. Open to going anywhete that can help him. Thanks so much.

Reply


May 1, 2018

Nancy Fox-Hoover says:
I am looking for clinical trials. Pancreatic tumor discovered Dec. 16. Am doing radiation and start new chemo by mouth. good exercise. I am getting scared now, and need to converse with others. My cell: 609-703-0320 Want to know of clinical trials. Nancy

Reply


May 6, 2018

Sue Friedman says:
Hi Nancy, Sorry about your diagnosis. I’m not a doctor and I cannot give medical advice but I have a few resources to suggest for you. Our Peer Navigation Program will connect you one-on-one with a trained peer. Visit https://www.facingourrisk.org/PNP to sign up. Our Research Study Search Tool can connect you and your dad with studies enrolling people with BRCA mutation and pancreatic cancer. You can search here: https://www.facingourrisk.org/research-clinical-trials/research-studies-search/search-results.php?cancer_type=pancreatic&study_type=treatment&stage=&test_marker=brca&keyword= If you are anywhere near Philadelphia, you might consider this clinical trial: https://www.facingourrisk.org/research-clinical-trials/research-studies-search/46/maintenance-rucaparib-for-pancreatic-cancer-that-hasn-t-progressed-on-platinum-therapy-in-brca-or-palb2-mutation-carriers/ I hope this is helpful. Warm regards, Sue

Reply

May 1, 2018

Nancy Fox-Hoover says:
Want to converse with pancreatic patients using immuno thearapy. nancy Fox-Hoover 609-703-0320

Reply


June 8, 2018

Linda Boyd says:
My brother was diagnosed with stage 4 pancreatic cancer early March 2018. He is currently having chemo treatments once a week at SCOA in Columbia, SC. We would like information on clinical trials and facilities that are doing Immunotherapy,. Any help and suggestions about where to go and doctors to see would be very much appreciated!

Reply


June 11, 2018

Sue Friedman says:
Hi Linda, I'm so sorry that your brother has metastatic pancreatic cancer. In addition to immunotherapy which has shown some promising results in certain solid tumors, for people with BRCA and other inherited mutations, PARP inhibitors have also shown promise. Here is a link to studies on FORCE and clinicaltrials.gov that are enrolling people with metastatic pancreatic cancer. This includes immunotherpay studies. https://www.facingourrisk.org/research-clinical-trials/research-studies-search/search-results.php?cancer_type=pancreatic&study_type=treatment&stage=metastatic&test_marker=&keyword=immunotherapy We are happy to help you identify additional studies. Reach out through our Peer Navigation Program: https://www.facingourrisk.org/PNP

Reply

December 12, 2019

Heather says:
I was wondering if anyone has any success stories on the pancreatic cancer stories?

Reply

Leave a Reply