Re: University of Chicago Trial FOLFIRINOX.

Lainey, huge thanks for your support. Tell me about this moderator status? Is it because of your length of time, or the quality of your encouragement??? Either way, you are a comfort. Thanks. It is scarey; does not seem real; so much to learn. So many things you forget to ask the doctor. I appreciate that this is a place to obtain some answers, albeit layman, but obviously trustworthy.

Re: University of Chicago Trial FOLFIRINOX.

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: University of Chicago Trial FOLFIRINOX.

Hi Ceci:

Lots of great information already.  My wife, Andrea, is in the middle of her 10th cycle of gem/cis.  The one thing I would add is that the doctors added a small bag of "emend" to the chemo process after the first treatment.  I believe emend is an anti-nausea drug, but whatever it is, Andrea swears by it.  It made a huge difference in how she felt after chemo.  I have heard this from other people as well.  So much really that I am surprised it is not a standard part of treatment.

I hope things go well,

Jason

Re: University of Chicago Trial FOLFIRINOX.

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 … p?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.

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: University of Chicago Trial FOLFIRINOX.

Hey you. BBQ Ribs tonight and I sent you some, Fed EX! Can't miss our Sat night date especially as we didn't do anything Fri night! LOL
Ceci will see quickly that we do use a lot of humor around here, best medicine is to laugh. And she sounds like one of us cwazy people. Glad things are quiet at your house! My house is always quiet! Just me and a desert scorpion now and then. I wouldn't mind a Scorpio (T was a Scorpio) now and then either!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: University of Chicago Trial FOLFIRINOX.

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

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: University of Chicago Trial FOLFIRINOX.

Ohhh... Y'all are something else! Thank you Marion, jScott, Lainy, kvolland, pfox, and thebompie4.... I am taking notes on all the advice and hope we get the chance to utilize these ideas as Alison begins her chemo. I am also taking notes on your stories so I can try to envision you as individuals and not just a big clump of advocates! I figure I can handle a small group of new friends, but, gulp!, there are tons others on the site too! But each of you has already offered precious nuggets of info... I am so appreciative. Forgot to mention that Alison set up a Caringbridge page, if you are familiar with that. She is listed as Alison Neustrom. Y'all have a great day. We'll be doing the Saints! Who-dat! So.... Lainy, you think I need to try and go on the Introduction page? I'm not sure if I know how to "copy". I'm on an iPad; maybe I need to get on the computer for that.

Re: 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

Re: University of Chicago Trial FOLFIRINOX.

Thank you Lorena. How is your son doing? Also, just browse around looking for Melinda? Will do.

Re: University of Chicago Trial FOLFIRINOX.

Hi Ceci, I think I mentioned that I am on the same chemo cocktail.  I too used IV for the first two times and then had my port placed and it has been a blessing since with no complications.  My port in placed under the skin on the right side of my chest.  It was a fairly quick out patient surgery and I healed nicely.  I was terrified of having my port placed but my doc's were great and I was medicated and it was over before I knew it.  They even used my port for chemo the next day.  My veins were pretty compromised after 2 infusions through IV and they were having to poke me multiple times to get started and that is when I decided to go forward with the port.  Feel free to ask me any further questions and Alison if and when she is ready.

Hope, love, strength...2013 and for the years to come, Porter.

36 (edited by surfer1 Sun, 03 Nov 2013 16:26:29)

Re: University of Chicago Trial FOLFIRINOX.

Cici, my husband has started chemo (gem/cis) and has tolerated it well. His only side effect is minor fatigue and constipation. Before we started, I read what to expect and expect to bring. Lots of the suggestions for a chemo care package aren't really needed. What we found is that the nurses are very knowledgeable and tell you what they are administering (hydration, steroids, Gemzar, cisplatain, etc.) and what each one was for and possible side effects. There is no real physical pain, except the prick when they put the iv in.  It was scary and emotional but each time it gets easier to cope.

I would bring the following:
*a water bottle and make sure she drinks the whole time. It helps protect your kidneys
*blanket-the ones they have are thin and don't help much
*food. His infusions are 5-6 hours. Keeping some food in your belly will help keep nausea at bay. We have found soup in a thermos works best. It helps with the bowel issues and it helps warm him. The room is cold and the fluids are cooler than your body temperature so drinking warm liquids helps
*book, iPad with Netflix, magazine, etc.  it's a long process and you need something to pass the time. My parents got us a netflix subscription which has been great for him to pass the time. I bring my hand sewing projects.

I also make sure I have a dinner in the crockpot so it is ready when we get home. Sitting all day drains you and the last thing you want to do is cook.

Good luck and take care. We are all thinking of your daughter and family as you go through this.
.

Re: University of Chicago Trial FOLFIRINOX.

Hi, Ceci, I posted earlier but my ipad must have not liked it because I don't see it! Welcome to our little family. Unfortunately, it isn't so little anymore...
When I went through chemo I brought my iPad, phone, blanket and because part of the infusion was Benadryl, I usually ended up nodding off most of the 5 hours. I appreciated the blanket because it is usually cold in the rooms. Some institutions have warm blankets... They are WONDERFUL, but get cool too quickly!
I drink a lot of water, and enjoyed hot tea if they had it, as it warmed up my insides. And I had easy to eat foods... as I did vomit after the third cycle, it became chicken noodle soup every time. I didn't want to ruin my taste for anything else! I did drink ensure during my treatment, as I lost my appetite for a few days, so used Ensure as a supplement for nutrients and calories.
Good luck, and let us know how things progress.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: University of Chicago Trial FOLFIRINOX.

Ceci,
You seem like a great mother and advocate.  Not sure if you till need help with this:  To search for a user (it has to be their username), look at the menu bar at top of page and click on "User List"… then you can search for it from there.  To search for a topic, say 'constipation', or even for a particular Dr, drug, hospital, treatment, etc,   go to the 'search' icon at top of page and use that.  It will pull up any posts with that word in it listing them from the most recent, but you can go way back in time if you just keep going to the 'next page'.

All the best to your daughter and baby grandchild.  Being diagnosed with cancer is simply overwhelming in the beginning, but once she starts getting treatments, things seem to settle into a routine of sorts.  Like Lainey often says "fright turns to fight". 
My sister was diagnosed 15 months ago and is on her 3rd type of chemo. Started w/ Gem-Cis but it knocked her blood cells and platelets too low so they moved on quickly to radioembolization with Yittrium-90 microspheres, which did seem to help control the tumors inside her liver, though mets appeared outside her liver.  Se moved on to Xeloda chemo pills which stabilized her for 4 months or so and just this week started Taxotere.  She too does not come on the site out because it can be too sad and scary at times.  I find it comforting to know more about CC, to be able to ask questions, seek support and know what to expect in certain situations.
Tiffany (search username Tiff1496) is the patient at MD Anderson Houston who the Dr may have been referring to as the person who accepted a 'tainted' liver in a rare but successful domino transplant.  Her story is amazing and she is a young mother doing well after a long road with CC.  Transplants are not common, but it is a wonderful goal that has not been ruled out permanently in your daughter's case. 
Hang in there and God Bless you and your family.    Willow

Willow

Re: University of Chicago Trial FOLFIRINOX.

Gotcha; thanks to all. Got my note tablet today and a new warm,soft cuddly blanket and am making my list for the other chemo items. Wonderful ideas.  Am really optimistic about minimum side effects after reading that this is possible. Yes, I read Tiff's story and figure she's the one Dr Shroff referenced. But I had misunderstood and thought she was still awaiting the transplant. It's so incredibly awesome to hear that it's successful at this time. Thank you all for your support. Ceci

Re: University of Chicago Trial FOLFIRINOX.

Hi, Thanks to all who posted what a person needs when going to chemo.  Your information will make my first chemo not so worrisome.  There is nothing like valuable advice!  I've also received a lot of encouragement from the many members on this site.  You have helped ease the sadness I have been carrying around.  The hospital has been vague. They do not want to commit to answers because each individual is different (so they say).  Turning to our members has been more helpful than anything I've read or been told at the hospital.  Many Thanks!  Patricia Avery a/k/a Linden, MI

Re: University of Chicago Trial FOLFIRINOX.

Thought to enclose the link to Melinda's postings:
http://www.cholangiocarcinoma.org/punbb … er_id=5631

Hugs to all you wonderful people,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: University of Chicago Trial FOLFIRINOX.

Hey everybody. Thanks for all your input with re to my daughter Alison beginning gem/cis chemo yesterday. It has gone amazingly well so far; have been back home 24 hrs now.  Maybe a little fatigue, very slight flu- like symptoms earlier today, but virtually no nausea, just an occasional "tight" feeling in her stomach now/then. Also, I saw where a couple members touted such raves about "emend"... So I was thrilled when the nurse said she'd be getting that; I didn't have to ask for it!   So.... Is this pretty much indicative of what her response will be like?Or could it still go south over the next 48 hrs? Also, do these side-effect have any relation to the white blood count, which may drop 7-10 days from now? Is there any correlation? I would assume if your nausea is minimal and you can keep up your food intake, that's what affects thE blood count? Or is it totally unrelated? Thanks, Ceci

Re: University of Chicago Trial FOLFIRINOX.

So glad to hear that everything went well.
Chemotherapy not only targets cancer cells, it also affects the blood cells manufactured in the bone marrow i.e. white blood cells, and platelets.  Nadir occurs 7 to 10 days after chemotherapy treatment, a point when blood counts are at the lowest.  Please know that it is a normal occurrence and that it is watched closely by the physician.  And, it is for this reason that a blood test is given prior to the next application of treatment.  Drinking plenty of fluids will help flush the chemotherapy drugs through her system and meals high in proteins will aid in the production of fresh cells. 
I wish for continued success.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: University of Chicago Trial FOLFIRINOX.

Ceci,

Here is the pattern for my wife:

Wed. is chemo day --
long day but not too bad (steroids + emend = ok smile
Ativan at night to help sleep (every night actually)

Thurs --
Zofran in the am.
Steroids and emend still working.  Pretty good day.

Friday--
Getting a bit more tired.  Zofran if needed in the am
First few cycles had a slight fever from Gem on this day (99?)
neck / shoulder pains (kind of like flu)

Saturday--
Worst day of the cycle.
neck / shoulder pain
worst fatigue

Sunday
much better

Monday
Mostly normal

Tuesday
Mostly normal

Hope that helps!

Jason

Re: University of Chicago Trial FOLFIRINOX.

Ceci,

My wife had the Powerport inserted into the main vein near the heart. It made chemo (just finished 8 cycles of gem/Cis) much easier to handle. No needles each time. I highly recommend asking about the port.

With respect to chemo, your daughter will most likely receive anti-nausea meds like Zofran right with chemo. For the next few days after each round, we used Zofran and compazine.

After a while the toxicity of the cisplatin was tough and the Zofran didn't do it. Our oncologist then started her on Emend intravenously at the start of chemo. What a huge improvement that made. Please ask about Emend.

Good luck to your daughter.
Carl

Re: University of Chicago Trial FOLFIRINOX.

And hopefully they are going to give Allison shots of Neulasta. This should occur after the second chemo infusion of each cycle. Neulasta counteracts the loss of white blood cells. It is basically a booster for her immune system.

Re: University of Chicago Trial FOLFIRINOX.

Thanks for those tips. We were fortunate to have gotten the emend on our first round of chemo. It has gone amazingly well( finishing Day 3) so far. I will definitely ask about Neulasta. Not sure what you mean, Shreitumic, about "second chemo infusion of each cycle". Alison is getting the gem/cis every 14th day. We have had one treatment. She will get her port next week; haven't heard about a power port.

Re: University of Chicago Trial FOLFIRINOX.

Many centers are now installing power ports. If it is an option, ask for one. It helps with everything, as it is accessed for blood draws, ct scans, etc. it definitely helps the veins in the arms!
Good luck,

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: University of Chicago Trial FOLFIRINOX.

Hi Ceci,

A cycle for my wife was gem/Cis once per week for 2 consecutive weeks and then a week off with no chemo, I.e each cycle was 3 weeks duration with 2 infusions of gem/Cis.

Re: University of Chicago Trial FOLFIRINOX.

Teddy had a power port when he had his Whipple 8 years ago and it is a total lifesaver. Everything can be done from there. I went home from the hospital in February and after 2 weeks there both arms had turned black then blue then purple/ I really felt I looked better in purple!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.