Pancreatic Cancer Group: Introduce yourself and connect with others

Dr. Matthew Katz is a surgeon at MD Anderson who has a an excellent reputation.

Thank you so much for getting back with me. I will definitely contact his office.

Hello. I was diagnosed in September with Stage 4 Pancreatic Acinar Cell Carcinoma. I know it is not as common and I have not seen many on here with this diagnosis. I would love to hear from anyone- regarding treatment etc . I have had 4 Folfirnox treatments at Mayo/Phoenix and am doing well with little side effects. I’m scheduled for my first scan next Wednesday (stressful!) and I am so hopeful that it will show shrinkage and positive results.

Hello @julieacklin and welcome to Mayo Connect. Those of us with rare cancer diagnoses understand how important it is to connect with others who have the same diagnosis. On Connect, there is a discussion on this type of cancer. Here is the link,
--Anyone have Acinar Pancreas Cancer?
https://connect.mayoclinic.org/discussion/neuroendocrine-acinar/

I would encourage you to read the posts and ask questions. There you will meet @stageivsurvivor and others who can share with you their experiences with this type of cancer.

That is great that you have tolerated the chemo treatment with little side effects. When did you begin the Folfirinox treatments?

Hi I am a 64 year old male living in Sydney Australia. In May 2023 I was diagnosed with stage 4 PDAC. The primary was in the pancreas body measuring 5.5cm long and 3.5 wide. It had metastasis throughout my liver with numerous lesions. My symptoms were standard pancreatic cancer vague issues… weight loss, which I had put down to retiring and no longer having big work lunches, back pain at night, feeling bloated and no appetite and then I got a lump at the back of my knee. At that point I went and saw my GP who prescribed a CT and ultrasound on the lump. That showed a DVT and the PDAC.

I got admitted to my local hospital and cancer clinic, which is a 10 minute walk from my home, where they did a liver biopsy and more blood tests. CA19-9 normal, but the biopsy confirmed PDAC. They then did a PET scan given the CA19-9 reading to double check. Subsequent genetic test showed BRCA2 mutation.

I have had 8 cycles of folfirinox, which then moved to gem / cis for 2 rounds when I started getting neuropathy in my left hand and then gem / carb for 2 rounds when it continued to get worse. This all finished about 3 weeks ago and I am now on a chemo break with my next CT on Feb 12 and next oncologist appointment on Feb 14.

The chemo has worked a treat to date and tumours have all shrunk considerably and I feel pretty good. Still no appetite but I have learned to just eat and have put on some weight and other than all my hair falling out a couple of times as chemo regime changed, I look and feel mostly normal. My only primary side effect from everything has been ongoing diarrhoea and loss of appetite. Occasionally tired. But I consider I have gotten off lightly in terms of side effects.

My background is in IT / technology in senior leadership roles, so I am very analytical. My first task when I got diagnosed was to create a spreadsheet of all the things I needed to restructure and organise in my life to prepare for dying within 12 months which is what I was told was my prognosis. This included legal, banking, investments, funeral arrangements, medical etc. most importantly teaching my wife where everything was and how to access financial and investment assets.

I have also watched dozens of YouTube videos on radiological training on how to read CT scans and oncology conferences. All very interesting! I always get my CT scans and try and interpret and compare them.

Anyway, I am not dead yet so we are booked for a couple of holidays… trip to visit friends in New Zealand next month and Japan in March.

One big regret is that my bucket list thing when I retired was learning to fly a plane. I got my private pilots license about 18 months ago and was about to do my instrument rating when I got diagnosed. Given my illness, I am grounded given I wouldn’t pass a medical. So my big flying adventure is over. The only positive is I save a lot of money!

All the best Peter

@spicerpa , We can take the discussion to the private message facility if you'd like, but I was wondering what aspect of your medical status would actually preclude you from getting your instrument rating, and if something specific has already grounded you from the private pilot VFR flight.

I was hoping to resume private pilot lessons after getting sidetracked many years ago, and wondered about my medical status as well. I'm also Stage-4 PDAC and on chemo, but the only things that might affect my flight -worthy physiology might be fatigue and diarrhea, which lots of other pilots suffer from and manage.

Grade-2 neuropathy in my feet has reduced the sensation slightly, but not affected motor control. I think, based on my ability to still drive cars with a manual transmission, that my feet are sensitive enough to pressure that they would also control rudder pedals with no problem.

Rules probably differ somewhat between Oz and USA, but I don't know exactly what medical standards apply, at least for VFR private pilot. (If nothing else, I think I could qualify to get the recreational or sport pilot certs here.)

Thanks and good luck!

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

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

I was just diagnosed today

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?