Pancreatic Cancer Group: Introduce yourself and connect with others

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?

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.

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

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?

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.

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
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

Hello @mkarst and welcome to Connect. As a newly diagnosed patient, I'm sure that you are ready to Connect with others who also have the diagnosis of Pancreatic Cancer.

As this is your first post, could you share a bit about how the diagnosis came about? Were you having symptoms, what tests were done? Has your medical team developed a plan for treatment yet?

I was just diagnosed today

My husband has pancreatic cancer, diagnosed last April. Has been going through treatment, chemo and radiation, the tumor shrunk a little but is surrounded by the artery and vein and the surgeon said he can't operate. I saw there is a dr at Mayo Clinic that operates on case like this. I hope to get in touch with him. We live in Boston but we would travel there

Hi there @markymarkfl

I have type 2 diabetes as well and need to have annual medicals which involve a cardiac stress test and if my fasting sugar went above a certain value (I think it was 7.5) I needed to report it to CASA (equivalent of the FAA in Oz). The annual medical also included having a full medical with a DAME. This was due August 2023 and I knew I wouldn’t pass the exam given fortnightly chemo was also tiring and had other side effects. Basically I wasn’t in a physical or mental place to be a PIC.

When I was having chemo the diarrhoea was really bad as well and there was no way I would get into a single engine plane without a toilet!

Now that I am on a chemo break I am probably in ok condition to confidently fly but I haven’t been PIC since before May and would need to brush up with an instructor and get my medical done. That said, my fasting sugar is above the CASA threshold (I think). My neuropathy has almost gone and I am in a better head space to do it, other than diarrhoea probably being a consideration. Just don’t eat before flight!

Good luck! It is a fantastic hobby and I do miss it. I still go with some flying buddies as a passenger but not quite the same…

Let me know what you do!
Regards Peter