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Barnstable's Message Board Messages

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RE: Pancreatic cancer!

by Barnstable - June 12 at 3:59 PM

Hello David,

I so well understand your terror as I've been there recently myself.  I too was diagnosed (in late November) with pancreatic cancer out of the blue at age 70. I'm a healthy woman with no history of anything.    Due to a complication, I had to do the Whipple first, at which time they discovered that I had Stage 3 cancer.  I tried chemo in early March ONLY because my family insisted. I didn't want to do it.  Bad experience for me, so I terminated treatment against everyone's advice, and I've had a wonderful 3 months, full of energy and life.  Ealirer this week, I found that the tumor has returned and I now have roughly 6 months, give or take.  The back pain is uncomfortable, but is managed by opiods. While I imagine things will get rougher as time goes on, I'm glad I have made the decision I have not to treat with chemo and radiation.  For me, quality of life is a greater consideration than length of life, and frankly, I was not convinced that chemo would prolong my life enough to warrant  going through the process.  

Don't make any decisions now; take it slow.  I found that reaching out to others, researching, spending time learning on the internet, and getting more than one opinion, have been critical.  

I wish you the very best. It's terribly frightening but take courage.

Liz

Prognosis Question

by Barnstable - April 15 at 6:48 PM

Does anyone have experience with survival statistics for someone who has been diagnosed with Stage 3 pancreatic cancer and turned down chemotherapy and radiation?  25% of the lymph nodes removed from her abdomen were "hot" after going through The Whipple. Her oncologist said it was 80% probable that the cancer would return within the year.  She's healthy otherwise.  Any experience?  Thoughts?

Hello all,

Am reaching out for some insights and the experience of others.  I have Stage 3 bile duct cancer; had to have the Whipple first; and of the 42 lymph nodes removed, 25% were positive, indicating metastatic disease.  Three months later, I've just completed (last week) my first round of chemo -- 5FU -- known as the mildest.  It was God awful. Ended up in the hospital for two days.  As my prognosis longer term is not terrific, I've elected not to continue with chemo, but to let the disease progress as it will.  I feel good; am eating well; have few impacts from the Whipple.  thus, I have a hard time understanding my oncologist's prediction that without chemo I'll be dead in 3-6 months. Seems to me, given my reaction to the chemo, that I'll have a far better quality of life (QOL) during whatever time I have left on this planet. Thus, I'm clear in my decision.  My family is workign their way through it.  I'm wondering if anyone on this board has had a similar experience.  Best and thank you. 

Thank you, and yes, I completey agree. The question is really about whether one has experienced the impacts of Folfirnixox AFTER the Whipple as opposed to before it, which is the usual routine.  The oncologist told us that he hadn't done it before, so couldn't give us any real insights.  Thx again.

Questions about treatment

by Barnstable - January 08, 2019

Hello all,

I am a 70 year old female in good health who was diagosed out of the blue with Stage 3 pancreatic cancer.  Orginally scheduled for chemo and radiation first, that was reversed due to a  complication.  I underwent the Whipple on Dec. 6 and now, almost 5 weeks post op, am recovering fairly easily (after some very tough initial weeks).  My oncologist has recommended Forflinox treatment of 6 months followed by 6 weeks of radiation (I am at MGH). I'm balking.  He was very clear about the unpleasant side effects and the challnege of this treatment while also noting that he had not, nor had his team, given this treatment POST Whipple, so could not recommend anyone with whom I could speak.  We've researched and analyzed the cost/benefit endlessly and I am considering no treatment and letting the disease run its course  (cancer was found in 10 of 40 lymph nodes but with clear wide margins).  Has anyone had experience with this decision?  I am grateful for whatever you can add to our decisions.  Thanks.

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