PCDaughter

<It was not easy to see her diminished in such a way near the end, and she too found it impossible to recognize herself in the mirror.  I weep for the struggles she went through in the end, for the life cut short, for all the things she still wanted to do but couldn't, for the gaping hole she has left in my life, and in my father's.  I am glad she is no longer suffering however.>

You could be talking about my mother here.  These are exactly my feelings.  I weep for my loss but I weep for hers more.  My mother died of pancreatic cancer in July.  It ravished her and took away her dignity.  She was such a strong fighter and lover of life, but towards the end she welcomed death with open arms.  I am left to go through her possessions and unfinished projects - a life interrupted.  I think I am coping well and resilient.  But the pain is always right there below the surface, easily triggered by something as simple as opening an email and identifying with a stranger who walks in my shoes.

Hi Paul,

My mother recently died of pancreatic cancer.  It all happened so quickly (yet went on for so very long).  I have a book, "Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill".  It is an organized system of doing what Maureen just mentioned.  People feel so helpless watching a loved one die.  Letting them do something to help you also helps them.

I never had the opportunity to actually use the book (always thought there would be time later), although I skimmed through it and it made sense.  It includes 348 pages of information.  I would love for you to have it.  If you are interested, send me a private reply with your address, and I will mail it to you.

Cathy

My 71-year-old mother was diagnosed with inoperable stage III PC in December 2010.  She underwent three courses of Gemzar and had no growth of tumor.  She then underwent 28 days of radiation and once a week Gemzar.  The pancreatic tumor shrunk but now she has liver metastasis with many spots and abdominal ascites.  We were offered either Folfox or hospice. 

We had been planning on pursuing NanoKnife, which would include surgery and then more chemo so that is a pretty aggressive course of action.  Now this feels like more of a mountain than just a bump in the road.  I understand that it is possible to shrink back multiple nodules on the liver and this is a rather common finding.  I also understand that some people can tolerate Folfox while continuing to work a job.  However, the reaction of the doctors to the finding of ascites has me very upset.  I don't know whether the surprise comes from the quick growth in only three months, the fact that my mother's health has improved so much since our first presentation, or if ascites is something devasting that predicts organ failure and the end.  It isn't at the point to recommend drainage yet, but we are having it done just to make her more comfortable for a weekend road trip for a family reunion.

Can anyone tell me what the ascites means in terms of survival?

Hi varistas,

Please get a second opinion at a comprehensive cancer center if you have not already done so.  For my mother, our first choice was a second opinion at Johns Hopkins at their multidisciplinary clinic, which is a one-day appointment with the input of all the different doctors involved, including a pathologist.  You can also have your records sent there for a remote second opinion. 

Have you been in touch with the Pancreatic Cancer Action Network (pancan.org)?   I ask them questions and they lead me to the research to make informed decisions. 

Never give up hope.  You are both in my prayers.

What helped my mom was Metamucil!  Three tablespoons three times a day (worked up from one teaspoon).  She is also on a low-fiber diet, no raw fruits or vegetables, and no peels.  She takes the Immodium on a schedule (as opposed to as needed) two tablets four times a day as well.  We also put her on a lactose-free diet.  After four months of 10 times a day watery diarrhea, it is now under control. 

Hi Let,

We are also considering the NanoKnife for my mother who is stage III.  We will be discussing the procedure tomorrow with our oncologist who is not at a facility that performs it to see what he recommends.  Last visit, he had not heard of it.  Are you being seen at Stonybrook now and that is why it was recommended?  What about it makes you skeptical?  I did contact PanCan about it and they said it was still experimental but did give me literature that presented it in a positive light.

There is another woman on this board who just had the NanoKnife at Stonybrook a couple weeks ago.  I hope she posts an update soon.

Cathy

Hi Ashley,

So sorry to hear about your aunt.  That is just heartbreaking that you got so close!  But another window is open so we move forward and go for that. 

How do you start the process to see Dr. Martin?  Do you send your records or must you go in person?  Is the NanoKnife covered by insurance? 

Cathy

Hi Ashley,

In a prior discussion about the NanoKnife, you had mentioned your aunt would be traveling to Louisville at the end of March.  Did this happen?

I appreciate your comments and the thoroughness (is this a word?) of your research. 

Cathy

Hi nyc1234,

I hope and pray that both your mom and my mom will be in that small percentage who survive at 5 years.  Somebody has to be, why not them? 

My lifeline has been the Pancreatic Cancer Action Network (pancan.org).  Every question I had, they gave me answers and literature to review.  They saved me many all-night Googling sessions.  Every heartbreak I encountered, they were there to lift me up with hope and knowledge.  They exceeded all my expectations in terms of "customer service".  They were so wonderful, I wanted to give back.  I found a local affiliate and am a volunteer.  I am gathering corporate sponsorships and donations for our PurpleStride to raise money to fund pancreatic cancer research.  It empowers me to do be able to do something when I feel so helpless. 

Cathy

Does anyone else use MCT Oil to supplement the diet for added calories?  I believe that is 110 calories per tablespoon and unlike other oils does not have to travel through the whole digestive sytem to be absorbed. 

Cathy