Pancreatic Cancer Group: Introduce yourself and connect with others

I would think in Boston there should be top talent for surgery, Dana Farber Cancer Institute is a top place, don't have a specific name
https://www.dana-farber.org/cancer-care/types/pancreatic-cancer/treatment
NYU Langone, Dr. Wolfgang
Hope I got the link right
https://nyulangone.org/doctors/1770519761/christopher-wolfgang?cid=syn_yext&y_entity_id=1770519761-primary&y_source=1_MjU0NTE3MzktNDgzLWxvY2F0aW9uLndlYnNpdGU%3D
Johns Hopkins Dr. Hi
https://www.hopkinsmedicine.org/profiles/details/jin-he
Radiation treatment with MRI Guided Radiation therapy seems to run a close second
You can also google this topic: I got this

Prior analysis has shown that MRI-guided radiation therapy may be a promising therapy for treating locally advanced pancreatic cancer. This suggests the potential for improving the survival of patients who received lower radiation doses without increasing the side effects of serious gastrointestinal toxicity.
Scientific Articles in the link
Prior analysis has shown that MRI-guided radiation therapy may be a promising therapy for treating locally advanced pancreatic cancer. This suggests the potential for improving the survival of patients who received lower radiation doses without increasing the side effects of serious gastrointestinal toxicity.

I didn't research all the locations for treatment, just to know that this options
https://www.targetedonc.com/view/mri-guided-radiation-therapy-a-novel-treatment-for-pancreatic-cancer

This is what I found about by Googling Dana Farber MRI Guided radiation therapy.
https://www.dana-farber.org/cancer-care/treatment/gastrointestinal/programs/pancreatic-biliary

Keep in mind that treatment of pancreatic cancer combines all modalities, chemotherapy, radiation, and surgery. I chose Memorial Sloan Kettering because of the particular expertise my oncologist Dr. David Kelsen, has in BRCA associated pancreatic cancer. He directed me to a surgeon, Dr. Jarnigan. My care at MSKCC has been great. The MSKCC formula: World class Excellence, Respect, and Compassion. I have heard the Mayo Clinic is like this also. My surgeon:
https://www.mskcc.org/cancer-care/doctors/william-jarnagin?utm_source=local+listings&utm_medium=organic+search&utm_campaign=local+search+doctors&utm_content=william+jarnagin-160+east+53rd+street
My oncologist
https://www.mskcc.org/cancer-care/doctors/david-paul-kelsen?utm_source=local+listings&utm_medium=organic+search&utm_campaign=local+search+doctors&utm_content=david+paul+kelsen-1275+york+avenue

It's essential to do your own research and find the team that fits your needs the best, location is a big factor. In just getting an opinion, travel is less an issue than the requirement for follow up needed after surgery. Hoping for the best for you

Yrs I went in for what I thought was a gall bladder issue. Turned out to be. A bass on my pancreas. Ct scan found it I had a biopsy to confirm. Now waiting for an appointment with oncologist. I'm
Hoping I can get surgery.

Hello @mkarst,

I look forward to hearing from you again. How are you feeling? Is your appetite OK or do you have problems eating?

Will you continue to post with updates as well as questions?

I really don't feel too bad. My appetite comes snd goes.

Morning,
I've been following a lot of post for a while and figured I better do this intro forum.

Pancreatic journey for 2023:

March - had been having what they thought was heartburn. After getting jaundice, pale BM and itching, my primary care immediately sent me to the hospital for an endoscopy. It confirmed PC. - stage 2B.

March 5 - May 19 - chemo - Fluorouracil, Oxaliplatin, Irinotecan.
June 29 - Whipple procedure laparoscopically. Removal was good with nothing in the margins. HOWEVER, 9 out of 22 lymph nodes showed signs of the cancer 🙁 15% survivability estimate.
July 1st - massive pain in the hospital - they found that they nicked my bowel during surgery and did not discover it for 2 days. I spent 6 weeks in the hospital with various infections and problems. My family didn't think I would make it home ever again.
August 14 - back home and bedridden.
August 19 - back to the hospital for a week. - The G/J tube was not in the right location so I was getting no food or fluids for 5 days. Extreme dehydration, new G/J tube.
August 28 - November - back home, trying to recover - very little movement.
Nov. 1st - tried chemo again - so sick, they sent me to the hospital again for 5 days 🙁
Lost over 40 pounds in 2023 !
January 2024 - I'm just waiting at this point. I've just stopped the feeding tube which was great to gain 10 pounds back and remain steady. The "waiting" part just sucks.
I called my oncologist and they will be doing blood work with CA19-9 early - along with a CT scan.
Have researched things endlessly. Seems like it will come back at some point.

QUESTION: If my CA19-9 and CT show things going back up, I know that clinical trials are probably my only hope. The oncologist did say that they could try gemcitibine chemo to "help" - not a cure. Realistically, if things turn worse - how much time can I really expect to have? I'm trying to get everything in order for my kids.

Hi again @waltsocal,

As you are probably aware, Connect is a patient-to-patient support group and we are not able to offer you medical advice or other information specific to your condition. However, we can offer you encouragement and support as you go through the process.

I would encourage you to seek out a Pancreatic Center of Excellence in your area. At facilities such as these, the doctors work with this type of cancer on a regular basis and therefore can be very helpful with educating patients and understanding the best treatment plan possible.

As you connect with others on this forum like @markymarkfl @stageivsurvivor you will see that their experiences show this to be true. Have you considered a second opinion at a center that specializes in pancreatic cancer?

Interesting reply. I understand how this forum works. I’ve had a lot of meetings with my local expert cancer “team”; have had second opinions and have tried to educate myself over the past 9 months. What I was looking for with my question, was other people’s experiences. Completely understanding that the replies are not doctors. So, I am looking for regular folks opinions and experiences. I was not looking for, or expecting any “professional medical” advice or opinion.

@waltsocal

If you are looking for the experience of others, I'd encourage you to read the posts of @stageivsurvivor on his profile. Click on "Comments" and you can read all of his comments since he first posted on Connect. Here is the link to his profile.
https://connect.mayoclinic.org/member/00-3a8075b911bad2ae280957/

Also, you might take a look at the profile for @markymarkfl
https://connect.mayoclinic.org/member/00-86391a0b9908cbd2338160/

They are both long-term survivors of pancreatic cancer and by reading their posts, you will see what steps they have taken in treating this type of cancer. It is important, however, to realize that everyone responds differently to treatments and not all pancreatic cancers are alike. However, their posts will give you a feel for how they approached their treatment.

I am glad to hear that you have sought second opinions and also attempted to learn as much as possible. Being a good advocate for yourself is most important. I look forward to hearing from you again.

@waltsocal ,

It's always good to "get everything in order" but not time to give up yet!!!

I had been meaning to get a will, living will, trust and all sorts of estate planning in order for decades before discovering I had cancer, but didn't get around to it until after the diagnosis. Finally got all that taken care of, but haven't needed it yet, thankfully! For others, it's a lesson to do sooner rather than later. Biggest disadvantage of my delay so far was a lockout from certain life insurance policies and other benefits, but it's definitely one thing I wish I hadn't been preoccupied with while dealing with my bigger cancer issues. Another piece of that lesson is how much complication that removes from your survivors. My dad had all of his docs in order (including Will and Trust) but lawyers still found some way to tie it up in probate court, dragging it out and costing us money.
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All that aside... on the cancer front, not everyone is the same, as you know. Although Folfirinox is supposed to be the wonder drug with Gemcitabine reserved for the feeble, my response to Gemcitabine + Abraxane + Cisplatin after a Stage-4 recurrence (and ATM mutation) has been far better than it was to my pre-Whipple Folfirinox. Although I've been Stage-4 for a full year now, it's considered "stable disease" (knock on wood) for now.

I'm not really experiencing any effects of cancer now as far as I can tell, only some fatigue, low blood counts, neuropathy and hair loss after a year on the GAC chemo. I think I could do this a good bit longer with a blood transfusion, as long as the disease remains at bay, but aside from developing drug resistance, the chemo wear and tear on your body sometimes limits how long you can remain on it.

Trials are a lot harder to get into than I imagined, but are definitely the next logical step. Some depend on any mutations you have, others depend on treatments you have or have not had, all depend on how often you have to travel to the trial site, and so on. I'm still trying to cross that bridge, and will post updates here when/if I do.

For now, just take hope that gemcitabine (maybe combined with some other drugs) will buy you time to explore all that.

Hi, my husband was diagnosed with stage 4 pancreatic cancer on December 18,2023. He also has lesions on his liver. He is unable to eat much. I would like to know what I can prepare for him with a lot of protein. He has lost about 50 pounds in the last 3 months. He seems to be in a lot of pain after he eats. His chemo starts next Monday, January 15th, 2024. Are there any hints or suggestions out there from personal experience that will help him? Thank you.