Topic: After being diagnosed, what's next?

Hello all, I am so thankful I came upon this site!  I have many questions.  My mother was diagnosed with cc  at the end of Sept.  She was at John Hopkins where she was to under go whipple surgery.  Unfortunately when they opend her up the doctors discovered the cancer had spread into her pancreas, liver and other parts.  There was nothing they could do.  She is now in Florida receiving her first round of chemo treatment.  The oncologist gave her 3 to 9 months. Im personally not ready for that, I give her longer, my mother is strong and a fighter.  She is 75 and was very healthy before this.  She could put me to shame with her energy.  Is receiveing chemo a good choice?  She was feeling fine before they started and now she has no energy and feels ill.  Can anyone give me an honest answer on what to expect.  I understand everyones case is a little different, but  I am not sure what to expect in the last few months of her life.  I live in Michigian and need to know the questions to ask when I meet with her doctor during Thanksgiving.  My prayers go out to each and everyone of you.  We must stand strong, have faith, love eachother and live life to the fullest!  Thank you in advance for you time and input.

Re: After being diagnosed, what's next?

Sharon,
I'm so sorry to hear the news of your Mom.  Events seem to happen so fast and leave us all wondering what we should do. 
John Hopkins is a good Cancer center with CC experience and I understand that not being able to complete the whipple was a real blow.
There is no question that for many, but not all,  of us Chemo has extended our longevity.  Sometimes only weeks or months,  and occasionally for years.  Having said that it also takes it's toll on most people who try it.  This is such an individual decision.  One key is that it really is your Mom's decision along with her family.    You want to gather as much information as you can about the options to help make an informed decision.  No one will be able to give you the black or white answer we all want.
Check the section on alternative therapies here.  Many of us have used different options again with varied success.  One bit of wisdom that helped me with my decisions came from my Chinese medicine practitioner.  My cancer was growing at that point and I was pondering my choices.  He said:  "If you have less invasive therapies available to you that can help stop a train that is going 25 mph, but your train is running at 80 mph right now, you may need to take drastic measures to slow the train so the therapies you believe in have a chance to help." 
One word of caution if your Mom decides to pursue a course of Chemo.  Most cancer centers will offer their patients a regime based on the trails they are currently running in their institution or a Chemo cocktail they are familiar with.  There are many options for Chemo, again you can research others experiences in that section of this message board, and again each patient is different.   You Mom has a right to ask for what she would like to try (least invasive first is one option, hitting the cancer with what she considers the biggest guns available is another) hopefully in cooperation with her Oncologist.  If a treatment is too harsh or not working don't hesitate to try something else.  Or to stop. 
I wish there were easy answers.  There aren't. 
Please keep us posted on how she is doing.   This is a wonderfully supportive community.  The support is not only a comfort but can sometimes help with the positive attitude and approach that is a key piece of our healing.
With best wishes,
Peter

Re: After being diagnosed, what's next?

Hi Sharon,
I echo all the wise words that Peter just posted. Chemo is an individual decision - sometimes it helps, sometimes it doesn't - and when it doesn't help, you don't know if it's because the chemo is too harsh or the cancer is just too aggressive to be helped at that point. As Peter said, it's always okay to stop chemo if you think it's just too destructive and giving too many side effects. In my mother's case, she didn't do chemo until she started to feel nauseous and ill every day and we thought chemo might help. THe first round knocked her out but then she felt reall good for about a week or two. The second chemo was just too much for her, messed with her immune system too much. Things to consider: does your mother have a pretty good immune system (not too many allergies and side effects to other drugs)? She sounds pretty strong so she probably can take it, but you never know until you try. Also, is her dosage too high and could it be lowered if necessary?(with Xeloda the dosage is often adjusted) Of course you want quality of life, so you have to just GUESS how much the illness if from chemo and how much from the cc. It's very frustrating, but please don't think you ever made the wrong choice - there is no wrong choice, because there are no clear-cut answers.

As for a timeline, there is no answer there either! Chemo can extend life but sometimes this cancer just doesn't quit and it progresses rapidly. My mother had two months of life after diagnosis, she was only 64. But many others extend their lives for a year or two or even more. Look for fluid build-up in the abdomen(ascites) or legs, jaundice, uncontrollable nausea (get good prescription anti-nausea drugs, more than one type) - but even these symptoms can sometimes just be glitches in the road and not real signs of the end.

I feel for you, being so far away and trying to figure out how to do the best for your mother from a distance.  As long as you give her your support and sympathy, which is the most important thing, you're doing the right thing.

Let us know how your mother progresses - best of luck to you!
-Joyce

Re: After being diagnosed, what's next?

Thank you both Peter and Joyce for the helpful information.

I am reading everyones story and gathering as much info as I can.  I will have a better idea of how my mother is doing when I visit her in a week.  She tells me she is feeling good, but has lost 4 pounds in the last 2 weeks.  Is this normal when you start chemo (Gemzar) Does anyone have any diet suggestions?   

Thank you again
Sharon

Re: After being diagnosed, what's next?

Hi Sharon, One real important thing while having chemo is to keep yourself hydrated.  Don't hesitate to go back to Oncolgy to be rehydrated.  In my opinion you are more prone to developing side effects or any that do appear will be more difficult to deal with.  Also, drinking a few cans of ensure a day along with her water will help some with maintaining weight.  Having chemo is so individualized.  Like Peter and Joyce mentioned if it is making her to ill you can cut back on dosage or stop treatments. Chemo can be extremely hard on the body.  It is certainly a hard choice to make. If it was my Mom and it was spread as much as you say.  I personally would favour away from chemo and have a quality end of life. But if my Mum said she wanted to keep on trying the chemo I would respect her wishes. Your Mom may just  kick butt, but more than likely this herrendous disease will dominate in the long run .  But who knows when for sure ?  Only the Lord knows for sure. Wish you both the best!
God Bless You Both.
Jeff G.

Take it to the Limit,One More Time! (Eagles)