Mental Health Help and General support.

Hi,

I am in a similar position in terms of age and stage but unfortunately had a PDAC relapse about 12 months after my Whipple’s surgery and Folfirinox treatment. As the relapse was in my liver I stopped drinking and have started to be very nice to my liver. It’s kind of crappy advice but I would suggest (i.) being nice to your liver because it is where PDAC likes to go second, and (ii.) having on-going monitoring CT scans as often as possible. We found out the hard way that the blood markers like CEA and CA19-9 can be unreliable.

Similarly, medical marijuana may be is useful for sleep and appetite and helping with neurological stuff during chemo but I have tended to keep away from that because it can be an immunosuppressant which is not so good if you are suitable to go down the immunotherapy route.

I would also suggest (iii.) getting your PDAC screened for MSI/dMMR as soon as possible (preferably at the first biopsy) because if you are one of the lucky few (5%) then immunotherapy may be for you - and it can be a game changer that is way better to factor into your treatment regime than chemo.

Some of the meds I take need to be taken with food so that means I can’t miss meals. I guess if you are not losing weight or condition then you probably don’t have to worry too much about it. It’s the wasting that Cancer does when you are eating normally that is scary.

I have linked up with our local hospice (which unfortunately is on the other side of the world from you) and they are awesome at managing this stuff and do offer short stays and mental health support but your cancer would need to be stage 4 before you could get referred there.

It’s awesome that you are still working. I really enjoyed my last 6 months of work and was genuinely happy to be able to be there.

All the best with your journey and sorry for the crappy advice. Stay positive - PanCan is a **** that can be beaten - and the journey can be fun too as long as you keep laughing and keep smiling!

Cheers

Tim

Hi all. I had my whipple in January 2022. After 12 sessions of chemo I’m using creon with every meal because I can no longer digest my food. I’m taking insulin every day because my body can no longer produce it. I still have issues with digestion and fatigue. I have neuropathy to a point I can feel the bottom of my feet. As you I suffer from depression sometimes wishing my cancer would return and let me die. My Ca-19 number is starting to increase but CT scan shows no growth. At 77 I went to work PT due to the economy but I can’t be far from a toilet so I had to quit. I find that smoking cigars relaxes me and helps with depression. Former LE so I find it difficult to use marijuana . I want to say hang in there. We are survivors and each day is a blessing. We will never get beyond “watch and wait”. Take care and enjoy your life as best you can

Hi - I am a 53 year old Male that was diagnosed in Jan of 2022 at Stage IIB and had a tumor (adenocarcinoma) that was resectable. I did 8 rounds of FOLFIRINOX and 10 cycles of chemo-radiation and then had the Whipple procedure in July of 2022 at Mass General Hospital in Boston.

Subsequent scans post-Whipple have all been NED.

I experience the survivor’s guilt you reference. I have found two things helpful - (1) talking regularly to a therapist that specifically deals with cancer patients/survivors, and in my case is a cancer survivor themself and (2) using medical cannabis for both appetite and sleep.

I am a big fan of talking with my therapist about these feelings. Given the low survival rates it does lead one into despair. However, the big take away I have is not a “why me” but a “why not me” attitude now and how I can help use my experience to help others going through a similar situation. If I can help inspire or motivate patients or survivors then that helps me as well. I do get triggered by recent news events - like Springer passing away last month, but I try to put it in perspective . Like you I had painless jaundice as my first symptom - that was incredibly lucky for me so that this horrible disease could be caught early. A lot of prayer, positivity and modern medicine did the rest to help get me where I am now.

One of the reasons I joined this network was to find others going through similar situations, as well as trying to help others that are on this same journey, realizing that everyone has a different path/experience.

I quit drinking at the end of 2020, so can’t comment on the red wine, but I can say the cannabis helps to take the edge off just fine for me. And it does help me eat. Like you I can’t be under the influence all day as I need to perform for my job - but I treat it like a social hour benefit. I do about 10-15 mg of gummies every night about 60-90 minutes before dinner time. It ramps up my appetite to help me maintain weight (like you I can go a long time without eating and I do not need or use Creon) and quiets some of my thoughts to allow for a pleasant evening and some good sleep. Downside is I can’t usually stay up past 10 pm now.

Anyways, I hope this helps. Would love to keep in touch.

Jay

I'm really sorry to hear about what you've been going through. Dealing with cancer and its aftermath can be incredibly tough, and it's natural to feel overwhelmed with emotions. It's great that you reached out here for support.

Maybe I should go to your doctor. My doctor gave 6 months as of September. Im done. Just going to live the rest of my life doing what I can do. Good luck

I was just diagnosed and very terrified having Whipple procedure on the 14th of November caught an early stages with a 1.9 cm mass at the head of the duct. I was told 20 to 30% survival rate. I'm assuming 5 year study? I believe stage 1 I still haven't absorbed all the information myself. Sounds like I have the same thing you did? So very confused. I Saw your post and it drew me toward you. Don't really know what to say at this time I am a 61-year-old female. I really don't know what to say at this time if you can help with my fears that would be greatly appreciated.

Got on the 20th of October having a MRI to see if my kidney cancer came back I'm cancer-free there. That is when they found the mass had my biopsy Whipple procedure was booked first. Have not had pet scan. Having surgery at UVA medical center in Charlottesville Virginia. Chemo will follow after that not sure how long though after the surgery. Thank you for your reply back and appreciate you thinking about my family and myself on the 14th.