Dad getting diagnosed.

Reading can be quite scary because much of the information at the time of publication is at least a year or two old. One step at a time. You do not know it is inoperable yet. There are many diagnosed with Stage 4 who are still here on this forum and posting after 3, 4 or 5 years. There are Stage 4 survivors - @stageivsurvivor being one - go read his posts.

As @joiedevivre mentions, it is too early to start making guesses as to outcome. I am here 13 years after being rushed to have a Whipple as micrometastatic disease went undetected. It wasn’t the Whipple that cured me but very aggressive chemotherapy using Folfirinox well beyond what is given for Standard of Care.

There are patients who have gone on to become long-term survivors-even considered cured who were never eligible for surgery. Do a search for stories and videos on Camille Moses and how her patient advocacy resulted in also being a 13 years survivor. Also look for the blog by Davi D’Agostino. She is a 7.5 year stage IV survivor. Both are close friends of mine that I have frequent contact with.

Key elements of our multi-year survival stories is we advocated for more aggressive treatment, found highly experienced oncologists willing to work with us to achieve our goals and were treated at top NCI Centers of Excellence. This is not a cancer to be treated at a community hospital or regional medical center. It requires a multidisciplinary team approach and that is found at high volume comprehensive cancer centers.

@stageivsurvivor thank you again. I went to read up about Camille and Davi; and I send the links to my husband. He's just completed Day 14 of the 25 sessions of VMAT with Capecitabine (to tackle the localised recurrence). There's weight loss - bloating, reflux, nausea and loss of appetite. With that comes fatigue. Staying optimistic and positive is the challenge.

I am a stage 3b survivor. I did a phase 2 trial known as the Triplet at Honor Health in Phoenix 6.7 years ago. There is hope. A lot of information on Dr.Google is years old so be careful . I have never had surgery. Go to the Seena Magowitz foundation for help. The foundation is a patient centric organization.

My oldest is now 29 and he is working through my similar diagnosis. Both of my boys are dealing with it in their own way. One is trying some counseling. One keeps in inside.

I enjoy doing my normal stuff. I have done some things because of this….making sure our financial house is in order. Cleaning up some messes that I should have years ago(my garage!!!).

My cousin(whose husband died of a rare brain cancer) told me that she went to a caregiver workshop and the question was asked how many of those with cancer think about it all the time. Very few hands went up. The next question was for caregivers: how many think about cancer all the time? Most hands went up.

After the shock wears off and the mini-pity party for me, I now just focus on quality time. No matter what I do, I want to to be worth my time.

I start a clinical trial Wednesday with photodynamic therapy and immunotherapy followed by standard chemo. I may be in palliative care, but I want to be in care so long that I need to plan hip replacement surgery in about 10 years!

Trust me, your dad knows how hard it is for all of you. That is what I think about: not how it affects me: rather how it affects those who love me.

I’m sorry that you have to deal with this diagnosis. But, it is not the end. It is only the beginning of the fight.

Great advise Brad . This is an overwhelming process . As the caregiver (I am not the daughter but the partner , I have a roll of support , help, guidance , advocate and appt scheduler and fascilitator . My hardest and my most rewarding is the support -you can only deal with “one day at a time “ . Slow down , maybe stop reading for a bit and plan some quality time to take a breath together . Take your guidance from your dad .

@bradthompson88 it looks like you are faring through this pretty well. I'm always curious when others mention immunotherapy trials as in my opinion that has to be THE cure. Do you mind sharing the name of your trial? Please post on this forum updates regarding your clinical trial progress. I wish you success!

https://clinicaltrials.gov/study/NCT06381154?term=23-009036&rank=1
My take on clinical trials and research trials is that while I want the benefit of a successful trial, even if I don’t receive one, I want the data to help researchers for future PanCan patients. I want something good to come from something so horrible.

Thank you @bradthompson88 for the link and for your selflessness - very courageous! One or more of these immunology based trials is going to be the ticket someday and hopefully yours is the one.

You’re very kind. But, I’m sure there are plenty like me. Maybe it is part of wanting some control of the uncontrollable. I asked if I could get a recording of the light hitting the tumor on the trial. Would love to see it smoke or boil or something….😊