Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you. We are awaiting results of the gene testing. Good to know about your experience re BRCA. The Dr. who our dr. consults with at MSK is Dr. Eileen O'Reilly. She is a specialist in pancreatic cancer, and I see she has a number of clinical trials listed on her website.

Dana Farber is of course one of the top places in the US. If your doctor contacts MSKCC for advice, you might want to be in the loop yourself by seeing someone there yourself. I have the BRCA gene and I was looking for an oncologist with a specific interest in BRCA and pancreatic cancer. There are a few differences in treatment with BRCA gene carriers. I went through the write ups on the oncologists at MSKCC and found Dr. David Kelsen who is doing a lot of work with BRCA. I was looking for one of the senior faculty and skipped over the junior faculty.

I believe having a pancreatic center of excellence review your case and treatment plan is a good idea. If the center agrees with the treatment plan, you will have some peace of mind. You will also be connected to a resource if things are not going well with your treatment. My 2nd opinion was fine with my chemo and advised follow up in a couple of months. My local oncologist is very supportive. It really would be a hardship to be getting chemo an hour from home. My local oncologist's office is about 10 minutes from home. I plan to have regular follow up to have ongoing review. After looking at the local options for surgery, I decided that MSKCC would be the best place to have surgery if I become eligible with chemo Rx.

Could you elaborate on the differences? I am in CT too, and My husband is being treated at Dana Farber, which is renowned cancer center as well, but we are curious too, as to what MSK offers. Dana has a specialty pancreatic cancer unit, which is why we are there. Our Dr. recently attended cancer conference in CA and was optimistic about research, new clinical trials, etc. I asked him how he keeps up on all the trials and research, and he says he cannot, actually. He said he calls a dr at Sloan Kettering regarding specific clinical trials for specific patients. So, I think we have to be our own advocates, and therefore wondering about MSK, and whether at some point, we should get second opinion. My husband was diagnosed in Jan and just had his second chemo treatment at Dana. They said he is not eligible for surgery.

I see that you are going to a cancer center - had missed that. I am 5 minutes from Smilow Cancer Center in CT but the difference I experienced with my husband and other friends there is night and day vs. MSK.

I would absolutely go the extra miles - no pun intended- and get the best care you possibly can. This cancer is aggressive and I personally feel it’s best to be at an institution that specializes in only cancer.

Usually first line protocol is chemo before surgery if they need to shrink it . What stage are you?
Getting a second opinion is always good for peace of mind .. you may be able to send them your reports ..

I am a 64 female, diagnosed with pancreatic cancer last week. I am an otherwise healthy adult. Fortunately, there is no sign of metastasis, and I am eligible for surgery. However, to kill cancer cells floating in my blood, I started chemo last Friday. I am seeing doctors a local University of Kentucky Marjet Cancer Center, which is only 20 minutes away from my home and very convenient. They are very encouraging and nice, however, should I think of getting a second opinion at Mayo or Sloan Kettering for a better chance of my survival?

Hi All-Like everyone else on this forum, I was stunned to learn (1/31/23) that I have pancreatic adenocarcinoma-in my case, a borderline resectable pancreatic head tumor. When I turned 67 last fall I was healthy, physically active & working full-time with no plans to retire any time soon. I started having GI problems early last Dec. & was correctly diagnosed about 7 weeks later thanks to a second opinion at Siteman Cancer Center in St. Louis. I just started chemo (Folfirinox) with the hope of shrinking the tumor (abutting PV/SMV) to proceed with surgery later. I am also enrolled in a clinical trial (vaccine) which has had good preliminary outcomes, but even if it doesn’t work for me I know what they learn may benefit someone else, which matters to me very much!

I am hopeful but still realistic—it is impossible to know now how this will play out, but I have every confidence in my medical team & treatment plan. I also have many wonderful people in my life who care about me & offer their prayers & support, which is truly a blessing. The daily struggles & challenges are many & it has all been very overwhelming & exhausting physically & mentally, but I am committed to staying positive & seeing this through to the best of my ability. My shining example of courage is my five year old godson who died in 2021 after battling Stage 4 neuroblastoma for half his life. He was a beautiful, sweet & loving child with a huge grin & a wonderful attitude. Sick as he was, he could still say to his parents “I love my life!” I am determined to keep his spirit alive in my heart and guiding me as I go down this path. 💜

I am not a big blogger so may not post much, but I appreciate the opportunity on this forum to share & learn from all of you-thank you.

Side effects were minimal. A little radioactive and sore for a day or two!
It requires two visits a set up visit and then nthe procedure. During both there is anesthesia. It is not a cure but a stabilizer and allowed me to go on to the pancreadectomy. I suppose it is most helpful when the liver tumors are in the same areA as mine are.