Pancreatic Cancer Group: Introduce yourself and connect with others

@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 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

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?

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.

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

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

Hi

I have stage 4 PDAC. My bowel movements and gas vary quite a bit day to day but what is fairly constant is diarrhoea. I have found gastro-stop hasn’t really helped and for a few nights this week I had to get up 4 times to pass wind (I could have driven a wind turbine!). I got up so as to avoid waking up my wife..

I found that Gasbusters (great name) helped and managed to get a reasonable night’s sleep last night.

It's been over a yr since my last MRI. I'm having trouble getting my dr to order another MRI. The radiologist recommended that I have one every 6 months. Maybe I need to consult with another Dr. I live near MD Anderson hospital in Houston TX. Does anyone know of a good Dr there that specializes in the pancreas and liver? Any info would be appreciated. Thanks

Thanks for sharing your story. I find it inspiring. Hope your treatment goes well for you.

Hello!
I have been using this wonderful site for a little while now. I am so grateful to be able to share my worries as well as be able to provide any support that I can offer in terms of what I have been through personally and my hope's for all of us for a bright and cancer free future.
I go by lilliejane2 here,
But my real name is Joy.
Lillie Jane was my great great grandmother, traveling over oceans of water to come from Europe and settle in
Ulster county where there was nothing at that time...late 1600s..
And making a home there! A home from nothing to a solid life.
I love that about her, and about my great great grandfather, and all of the generations of my family. We were make do people, and that was our strength.
And so it is with me. I am an artist and writer
And love to create things out of nothing.
My home is decorated with old things like nail kegs, and maple syrup buckets and crocks and candles. I am retired now, but worked in a NewYork state park until retirement. I led hikes, taught classes, planned events, did artwork for flyers, helped patrons.
A lovely park, with a beautiful view in many directions.
I was cancer free for 20 months, with a confusing resurgence in late september. I am now treating every other week with a modified 5FU treatment. Nausea and fatigue are difficult, but I keep trying new things to keep nausea at bay.
Cancer is not the first tough thing I have had to overcome. I've had lyme disease for about 20 years, and about 5 years ago broke my hip at work. Lyme was tough. I still have it, and some coinfections that go with it, and find that herbal protocols work the best for me.
I try to research new methods for healing. Some work, some dont.
But it's really important to keep trying. Keep using your many strengths to keep fighting and keep succeeding. And keep exercising if you can..
Weight training and aerobics work best for me. I use 5 and 10 pound weighs and try to work out 3 times a week with weights and do aerobics the other days.
I find that exercise not only strengthens your body, but takes me away from thinking about cancer.
What I really want to say in my long winded post here, is please do whatever you can to find and keep yourself during your struggle with a monster that wants to steal from you.
Keep fighting for you and who you will become during this and in your coming long years of wonderful life ahead. I know it may seem a daunting task and i know not feeling good and worry rob you of all but the basics.
I'm trying to see life beyond cancer. Little by little, shine and thrive.
My best wishes to all of us going through this.
We are a force alone and together. Sorry for having so many platitudes. I only mean to share hope.