Pancreatic Cancer Group: Introduce yourself and connect with others

Thank you all for these discussions its so difficult finding info like we have all contributed ..

She is my husband’s Dr and she and her team are excellent. There are loads of trials going on there as well as at all the major cancer centers.

Dana Farber is excellent also. I have considered getting another opinion from them if my husband reaches the point where it seems nothing is working but so far he is doing very well- considering.
At Yale we had trouble getting into the liver specialist initially and the gastro person. They were saying weeks for an appointment and this was before his diagnosis but after bloodwork and an ultrasound suggesting cirrhosis. In hindsight, I wish it was cirrhosis. After his scan, with diagnosis, we saw an oncologist who said he needed another scan- and they told me 3 weeks!
By the time that 3 weeks was up I had gotten a second opinion from Dr Simeone’s team at NYU
and then our Dr at MSK. Both recommended the same study. Yale has no access to many of the studies. The big centers do.
There is a lot of great new research and I pray a lot.
He is also not a candidate for surgery, metastasis to liver. Diagnosed last April 12th. Started chemo May 3.
God Bless

Thank you very much for your reply. You mentioned there was a night and day difference between MSK and your local hospital. Could you elaborate on the differences a little bit more?

Thank you. I am now encouraged to contact other hospitals. People talk about MSK quite a bit here. Do you think that is my best choice? MD Anderson should be #1 in the number of treating pancreatic cancer patients, but I do not hear much here. I wonder why? Also, when people say Mayo, are they talking about Mayo in Rochester or Jacksonville?

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.