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by ode2star on Fri Jun 29, 2012 12:41 PM
I got to this website while doing research on Folfirinox. My Dad was just told Wednesday tumor on pancreas is size of lemon, is in liver and in lymph nodes. Trying to gather as much info as possible to help him make treatment decisions - Gemcitabine and Folfirinox were two options.
Folks live in different state, Mom is overwhelmed - trying to help.
Any suggestions on things to do, not do, medically and mentally to help make this not so overwhelming. Just seems like we don't have time to do anything (Doc said 6 months with treatment). Any help/suggestions would be taken kindly: Hospice, managing phone calls/visists, drugs, side effects, learning the new language, etc. I know this is very broad question and everyone is different.........
by Amandako on Fri Jun 29, 2012 04:47 PM
My dad was also just diagnosed about a week ago. My parents live an hour away. And I too am totally overwhelmed. Gemcitabine is what they have said they will do for my dad. I've reasearched like crazy on the computer since all this happend. I've read good things about Folfirnox but I read some where that you could not drink anything cold for a period of time after having it. Which for me would be very hard to do. My dads is also in his liver.
Our doctors have not been so blunt as to how much time he has or anything like that. Which is hard too. I want him to have hope but at the same time I don't want it to be sugar coated. In your dads situation I've read a lot about Pallitave care which unlike hospice you get chemo and treatment but you are monitored for pain and basically kept in as much comfort as possible.
I too am just learning about all this stuff. I don't have any great advice but anytime you need someone to talk to I'm here for you. I will be praying for you and your family.
by shelby1 on Fri Jun 29, 2012 05:55 PM
Don't let the "cold" issue get in your way. Some people have no issues with it ,some have a little or more. You seem to be on track as these are the standards. Gemcitabine is milder than Folfirinox and you can change chemos. Gemcitabine alone is the original standard but now it's mostly with other drugs like GTX or GAX (G is the Gemcitabine also called Gemzar) and others. Folfirinox is said to be the strongest and most effective but may be harsher, The "cold"thing is in anything that has an X or OX but is totally different with everyone anyway. Forget about time issues as there are people in the same situation who have been at this for longer than 6 months. No doctor should say what he said unless they're a PC specialist, Find one!!!. My husband's was baseball size, no mets though, and we're still here after years of treatment on and off. It's all you dad's decisions and my experience just says someone must be in charge all the way and that someone has to understand what's up than explain it to others, even you dad. Good Luck
by ode2star on Fri Jun 29, 2012 07:49 PM
My folks live 4 hours away. There is family closer, but I selfishly wish I was closer. Luckily I am employeed at a place that is very understanding and flexible. Am going there next week and they have asked me to go to the Oncologist appt with them. More ears the better type of thing.
Thanks for sharing.
by ode2star on Fri Jun 29, 2012 07:52 PM
I totally understand what you are saying about the time. I'd rather we didn't know - but Dad's a straight shooter type of guy. He understands it's just the docs opinion as well. Didn't know about the x or OX. Very helpful.
Specialist - luckily live in MN where Mayo is (only about an hour away) will be suggesting to folks next week.
Again, so glad there are resources out there like this. Plain language I can understand - valuable experiences.
by crayfish on Sat Jun 30, 2012 01:40 AM
One dining room table + one giant calendar + two pieces of posterboard + one Word Document + one notepad + legal -pad (or such).
Calender - Appointments and other info such as ER visits, when chemo starts and ends, good news days, etc
Posterboard #1 - big letters and numbers! Phone numbers for Drs. (with names of nurses and other staff as you learn them), hospital, medical supply, home health, etc.
Posterboard #2 - meds with dosages - you may consider making it into a list with times of dosing for each so you can check them off when given - I kept a tub with all the meds in it next to this
Word Document - something you can edit easily and print out quickly - all doctors and all meds with dosages - keep it current - carry a copy with you
Notepad - every morning make a list of what has to be done that day - Ex. Dr. Onc 1:30, pick up XXX (prescription) refill, buy Gatorade - if people want to help, delegate what you can - try not to worry about what the days ahead may bring and what might happen and what you might have to do -that's when the overwhelm hits - follow your list, cross things off and when the tasks are done, breathe! I have to say it: one day at a time - Yes, sometimes your list will be sabotaged - shift gears, make a new list the next morning
Legal pad - no brainer but make sure you have a pen and pad near the phone where you can write down phone conversation info
Cancer causes such a loss of control. Being organized (may be over-organized) made me feel like I was on it, helping.
I pray so I've prayed for your Dad. I first came here looking for an answer to an annoying side effect problem - something that didn't amount to much overall but I got an answer and could make my guy more comfortable. It meant a lot to me.
by sheann on Sat Jun 30, 2012 12:31 PM
I have been on folfirinox since november, side effects harsh to begin with but chemo was adjusted, since then i have been doing well, just tingles in my hands and feet. Last scan showed mass on pancrias shrunk 30%, i am now on a 6 week break and will be going on a acation for 10 days.
Wishing you the very best with what ever treatment your Dad goes with, stay positive and strong.
by ode2star on Sun Jul 01, 2012 08:58 PM
Great tips- I am an analyst and organizations is so important. Have a big box of stuff to bring them when I visit this week. Thanks again.
by ode2star on Sun Jul 01, 2012 08:59 PM
Sounds like things are going the right way. Thanks for sharing - nice to know there is hope. My best to you.
by jmgdrama on Thu Jul 05, 2012 07:45 AM
I can relate and know you'll be busy researching and absorbing an incredible amount of detail in a very short amount of time. It's not great news out there, but there are also some incredibly hopeful stories too.
From personal experience with my mom (58, diagnosed with stage 3 PC in Dec 2011), I wish we had gone with Folfirinox as the first line of treatment. Although it has many more side effects, it's definitely the more aggressive treatment and offers a better prognosis (about 30% chance of being effective vs Gemcitabine's 15-20%). Since my mom is young, fit and active, she would have been better posed to tolerate a harder treatment as neoadjuvant therapy in the hopes of getting to surgery.
We went with Gemcitabine, and the side effects were very mild and tolerable. Unfortunately, when combined with radiation, it had no effect and the tumor grew. That's not true for everyone, but we weren't one of the lucky ones. Surgery isn't an option now, but she's on Folfirinox (3 rounds) and doing well so far.
Reach out to Pancan. They have a lot of information, can help pull clinical trial details, and have available people to talk to whether you're the patient or caregiver.
Get consults. General oncologists are okay, but if you live in an area with access to a specialty center with oncologists that focus on pancreatic cancer, check them out. It's completely accepted to have second and even third opinions with this diagnosis and to have a specialist riding along throughout.
Ginger recipes. We're finding ginger helps a lot with the nausea from the Folfirinox, and the internet has been most helpful in a variety of recipes (everything from crystallized ginger from Trader Joe's to ginger tea to ground ginger in pumpkin muffins).
Get the hard stuff out of the way. Get the will taken care of, talk about funeral plans, etc. Hopefully you won't need any of that for a very long time, but getting all of it discussed ahead of time means a sort of peace of mind and ability to fully focus on treatment and recovery!
All the best to you and your family. My thoughts are with you!
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