Pancreatic Cancer Recurrence after Whipple

Hi garden lady, I always appreciate your posts. I am engaging in second line treatment with Gemzar (only) but know it might now work. I am accessing a palliative care team, even though I don't have symptoms yet. I am very proactive at looking at the if-then options. If Gem doesn't work and other interventions will be too invasive or impairing (or if there are no options) I am prepared to use palliative care resources and then transition to hospice. My quality of life is excellent and at only 65, I feel young, but I have had a very complete and fulfilling life and I don't want to live with prolonged suffering or severe disability. I wish you--and both of us--the best. Let's keep track of one another's journeys. Beth

I think that you have Understood the True meaning of Heaven.It is a State of mind which comes when u Understand that You Value All your earth Life to the Very End and That is Life and that is Contentment and to Know to be CONTENT is to be HAPPY= HEAVEN!.. RIGHT HERE!....SMILE!

I read your story knowing that it could be my story. I have told my family members that I only want to live if I can have a meaningful life. My idea of a meaningful life might change over time as circumstances change, but I know that at some point, I might give up on treatment and let death come. I have been learning about Hospice and know the resources in my area, but as I have no family close by, I would like to live out what time there is left closer to family, probably under hospice care. Thank you for sharing your story. Prayers with you always. Please keep in touch with the group and let us know how you are managing.

Hello
I apologize for not getting back sooner. Someone had asked about proton radiation I had. Iwas dx april 2022 stage 3 borderline resectable had bile duct and duodenum stent placed which after a month in hospital lost extreme weight and left me weak
The folfirnox put me back in the hospital , then switched to gemcedibine/ abraxane. For several treatments. Got 2 nd opinion on whipple from johns hopkins but because of my weakened state said they would attempt but my outcome was not good
I opted for proton radiation here at miami cancer institute ( an affiliate of MSK. The end of Sept. all looked great thru Mid Feb but then had started with digestive issues
I had per scan in March that had some uptake , biopsies showed negative .. had another dueodenum stent placed April18 due to obstruction scar tissue from radiation was infiltrating stent.
I also have some obstruction of bile duct but at this point that can only be drained if my bilirubin goes up
Meanwhile I was getting fevers after stent placed. Just got out of hospital . Have cholengitis , e. Coli
Infection. Trying to vlear
Meanwhile had many minerals etc added via IV and transfusion
My markers have gone up as well as alkaline phospotase, ferratin. Liver enzymes etc
Which also could be from infection
So as to whether the soft mass seen still on scans is scar tissue as apposed to cancer is still our hope
I had had breast cancer 6 years ago but was in great shape and tolerated all treatments well
With this all the procedures in hospital last year did me in 2 failed endoscopic to do bile duct and biopsies, then IVR to successfully pit stent in bile duct, then another endoscopy to put in original duodenum stent , port placement
All of which required fasting and ive never quite recovered
Im small 4’11 and normally weighed 103 lbs I left the hospital last year at 77lbs.. I managed to get up to 82 lbs . But after this last ordeal requiring liquid diet 4 days after procedure went to 70. And Im now trying to fight my way back.
But as for proton therapy everyone is different as I said im hoping my issues are more the scar tissue now
I think its a promising alternative for buying more time for those that can not have surgery
My experience has been handicapped by malnutrition.. I can only eat small amts , and no salads or raw veggies fruit. Which truly hampers the situation everything needs to be cooked soft.. due to stent
Anyway thats my update

The living Condition Here are worser than Living Outside That should be enough to let you Know what I had to Live Like AFTER Surgery and leaving the aftercare Facility,2 Years Ago But it at least Kept me Out of the Rain.. Now that i have been informed of this Possiblity that the Cancer may have returned I know i dont stand a chance to take kemo or radiation withou a complet Breakdown.And that is why i say no to either and just let death come.I have spoken to a Nurse who has said she can get me in a Hospic Environ..I will acept this offer after i go to get thois special scan to ratify that the Cancer is Cancer and not Scar Tissue .With That knowlege i can at least Know what to exspect in a frew months,. Thank you and Know that im ready as any who must face this and whoever You are I appreciate your advice and the Human Quality of Care you from Love Devine have Gave to me A Stranger! pEace and Blessing BE on You!

Prayers are with you. If you are not in touch with palliative care, your treatment team should be able to put you in touch. Palliative care is about improving the quality of life rather than prolonging life. Thanks for sharing your very difficult story.

Here is some info to learn about palliative care and hospice.

- Mayo Clinic Q and A: Palliative care — improving quality of life during a serious illness https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-palliative-care-improving-quality-of-life-during-a-serious-illness/
- Palliative Care: What is it? How do I get it? https://connect.mayoclinic.org/discussion/palliative-care-1/

i know NOTHING yet But I do KNOW ONE THING and that is you guys have helped me with Both Knowledge and Kindness AND even if i do die I have what you have Given and I appreciate That! It makes you want to live and at least try and although that i not sure if i want to try different things At least im Glad to know that others are Trying to fight and Live !

As cliché as it is to say, you are NOT alone. We are ALL here with you, even though the silence in the room may feel lonesome. If there is one thing I can tell you, if you get the opinion from one doctor, FIND another opinion of one or 2 more doctors. If they all say the same thing, then at least you put enough feelers out there. There's a lot of strained healthcare systems out there, and time to time, doctors are gonna miss things. In the meantime, find something that brings you joy, even if it's something as small as watching the sunrise and sunset.

@upstairs17, that must be hard news to swallow. I think you are wise to learn about the side effects of treatment and weigh what is meaningful for you between quality and quantity of life. Keep in mind that sometimes treatments like radition can be used to help manage pain as a palliative treatment. The goal of treatment can be to keep you comfortable and not necessarily to extend life.

Have you looked into palliative care or hospice care? Do you live alone?