University of Chicago Trial FOLFIRINOX.

Good Morning Ceci, My 30 year old son was diagnosed June 13, 2012 and he also never joined this site. But as his Mom and the family researcher I was on it day and night looking for help and answers, which I received in abundance! I can honestly say I learned more about CC and found different avenues to research here then anywhere. Knowledge alleviates some of the fear. Then when the Oncs recommend something you understand what they are talking about and are able to ask intelligent questions. This helped my son enormously as he didn’t have to “fight alone”, I brought him all the information and then he would decide. The wonderful people on this site taught me how to help alleviate the small annoying side effects that come along. Hiccups, constipation, etc… I highly recommend you spend a lot of time learning to navigate through the older posts and all the sections. The information here should be printed in gold ink! Best of luck to your daughter, you and your entire family! Fight hard! You may wish to Find the link to Melinda’s posts, she’s in a really great clinical trial that has a lot of promise , I believe. She will fill you in if you email her directly! Lorina

Oh Lainy – can I come to your house please? Mine is so crazy right now with the husband, the daughter and the grandson, not to say they aren’t the loves of my life but quiet?! not really sure what that is anymore. And my dinner was a bowl of ice cream….sshh don’t tell anyone.

KrisV

Well Ceci and Lainy,
I guess this is my Saturday night date too. My fault too. First Saturday I have had to work in two years and I am too tired to go out. My husband wanted to but I didn’t.
The port is the one that is planted under the skin. As a nurse I like it better because when you are not using it then it is just under the skin and doesn’t interfere with anything. You can shower like normal and it’s just there. However it is under the skin and requires a small poke to access it. If the poke is painful then they can numb the skin first. Placing it is a simple outpatient procedure for most people. The biggest risk factor (with it and most anything that is implanted) is an increased risk of infection. That is why my husband’s is out.
I believe that our tiff1496 had a transplant and here is a link to her story. It is very inspiring to read.

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=10780

Keep us posted and I think I may be a little addicted to being here. It does help me get through what we (my husband and I) are going through and focus less on us and more on others. He refuses to even look at the site right now although he does listen to my stories.

KrisV

And Lainy I hoped that you were feeling soooo much better with all this. I keep my fingers crossed for you and keep you in my prayers.

Hi CeCi, is this our Saturday night date??? Yes I was asked to be a Moderator after the powers that be saw I was going to stick around after Teddy passed.
Most people have had enough when the Journey ends or succeeds greatly. Can’t blame them this is not easy because each member that joins becomes family. I joined at the time of inception, was just lucky to find it on the Internet. I felt compelled to pay it forward after being helped for over 5 years. I could never have been as strong or wise if you will without the team I had helping me. I think at times I am actually addicted! Truth be told I get so much more out of it than I put in. Ceci, always take a pad and pen to the ONC or even a tape recorder and always have questions written down so you don’t forget to ask. I know we always think of things later! I have been trying to get in to remission from Ulcerative Colitis for 2 years now. They recently put me on Remicade which is much like chemo through an IV. So I wrote down side effects I was getting and came up with 16 of them on and off every day. I was so pleased that the nurse read each one and told me if it was an allergic reaction or a side effect, I am wondering if this would help with chemo. Even though it changed nothing I went home feeling more peaceful knowing it was all normal for what I am having done. Just say’in. Anyway when you get in to all this with the chemo remember to be kind to yourself, I think we all forget to do that. Oh and listen to your gut, it is usually right on. I feel I graduated from GUT 101. You just keep writing what ever is on your mind as it always feels better after you pound the keyboard!

Ceci….I too would like to welcome you to our site. As expected you have already received tons of wonderful information. I just want to add that hydration should not stop with administration of chemotherapy rather, consuming plenty of liquids throughout the entire treatment will help flush the kidneys of the drugs.
Good luck and please stay in touch.
Hugs,
Marion

Oh, I forgot to mention. Alison will use Dr Shroff’s gem/cis prescription for the chemo, but the dr in Baton a rouge will administer it. When and if her symptoms become unmanageable, she can transfer to an oncologist here is Lafayette where we can be of more help, still using the MDAnderson prescription.

Hi Ceci, sorry you had to find us but you will find this site so welcoming and wonderful. I am young like your daughter 34, and she is more than welcome to message me too if she has any questions. I am almost on my 6th cycle and tolerating it well. I agree the first time was the scariest as mentioned before because it was all so un known and didn’t know what to expect. I was also terrified to get my port placed but am so happy that i have it in now and it has been a blessing with no complications. As far as chemo I do try and stay hydrated as much as possible. They administer me zofran and steroids at the time of chemo as well as steroids for the following 3 days at home. I also have anti nausea meds. Many of these common side effects can me managed with medication. I have tolerated the side effects well and I struggle mostly with the emotional aspect to the whole experience with anxiety and depression but am also managing that well with medication also. Good luck on yall’s journey I wish you luck.
Porter

Ceci

Hydration is important….but they do a mighty fine job of pumping you full
of hydration WITH the chemo. It is all administered at the same time…
bags and bags of fluid and fluid for steroids and fluid for chemo and fluid
for flushing kidneys…etc.

My husband has been on Gem/Cis for 8 months straight and pretty
much FLOATS out of chemo with lots of potty stops all day long, on
the way home and all night.

The first round seems to be the worst mentally, at least it was for
us –since it is SUCH an “unknown”. After a round or two, we felt
like old pro’s and the hospitals/nurses/drs have this system down
to a science.

best wishes…it’s a scary and hard place to be.
hoping your daughter sees really great results from this cocktail!
Dorien (and Kyle) Nielson–Kyle, my husband is the guy with the cancer