Topic: University of Chicago Trial FOLFIRINOX.

Hello, So glad to have found this website!  I was diagnosed on May 24, 2013 with cholangiocarcinoma, Stage IV, inoperable.  Prior to diagnosis, I thought I was very healthy except for fatigue.  Nine days prior to May 24, I began not to feel well and had uncontrollable itching.  I went to urgent care centers three times in one week.  Finally, could bear it no longer and checked into Henry Ford Hospital, West Bloomfield, MI emergency room.  They took a cat scan and mri.  I was told I had a 6 cm liver mass and would need to have a stent placed for drainage of the bile. Bile duct was obstructed by tumor. I have been stented 3 times since May 27, 2013. The procedures went great and has made me comfortable, although I must watch my food intake.  Cholangiocarcinoma was suspected per my chart right from the beginning.  PET SCAN confirmed metastasis to lymph nodes. I will skip the details, but if you want to know, please e-mail me.  I have been accepted at University of Chicago for a clinical trial study.  IS ANYONE familiar with the FOLFIRINOX study? If so, I would appreciate hearing from you.

Re: University of Chicago Trial FOLFIRINOX.

Hi ladylinden,
I'm sorry you had to find us. I'm glad you finally found somewhere to help you. We have a few members that go to MI for treatment. I hope they chime in.
Here is a link to a discussion about folfirinox.
http://www.cholangiocarcinoma.org/punbb … 477#p74477
Good luck with the study. I hope it works for you!

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.

Dear LadyLinden welcome to our remarkable family but sorry you had to find us.  I cannot help with Chemo and Trials as my husband never had those treatments but WOW, did he have the horrible itching as well. Sounds like you are on the right track and hoping and wishing for the very best for you. I know you will be hearing from more members and please do keep us posted as we truly care. BTW we have had Members who were DX at Stage IV inoperable and after treatment things all changed for the better.

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.

Yes, he is the oncologist I am seeing.

Re: University of Chicago Trial FOLFIRINOX.

Hi LadyLinden,

Welcome to the site. Sorry that you had to find us all here but glad that you've joined as you're in the right place for support and help, and you will get loads of each from everyone here. Thanks for sharing with us whats going on with you and what you've been through and glad to hear that your stents have been working as they should and that placing them went smoothly each time too.

I hope that your trial with Folfirinox goes well and provides excellent results for you and please keep us updated on how everything goes. Keep coming back here too and please know that we are here for you and we care.

My best wishes to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: University of Chicago Trial FOLFIRINOX.

Welcome!  My husband was initially accepted for the FOLFIRINOX trial last fall  but was later determined to be ineligible because of prior radiation.  His oncologist, in consultation with Dr. Catenacci, decided to treat him with FOLFIRINOX even though he wasn't in the trial. He was on FOLFIRINOX for about six months and then on FOLFIRI for a while longer.   His tumors did not shrink but they did stay stable for quite a while.  Side effects from FOLFIRINOX can be tough but my husband did pretty well and was able to continue working throughout the treatment.  Unfortunately, he had a bad liver infection in June that resulted in a change to a treatment that didn't work very well.  He is now back on oxaliplatin with Xeloda which we hope will work better.  We only met with Dr. Catenacci a couple of times but liked him very much.  I also had a chance to speak with him at the ASCO conference and he indicated he is doing some additional research in cholangioarcinoma.  I hope your treatment is very successful.

Re: University of Chicago Trial FOLFIRINOX.

Hi LadyLinden,

My mom was at University of Chicago on the trial as well. I have heard that the side effects can be quite rough, but she was able to handle it all fairly well. She was in good shape to start with, she was a strong 54 year old! She had fatigue, mouth sores (get a prescription rinse if they pop up!), leg cramps and some thinning of the hair. Her first treatment was brutal, I recall that the anti-nausea meds had only been prescribed for days 1-3 of chemo. After the first treatment, she stayed on anti-nausea meds through day 5 and it went much smoother. We also did the treatments Mon-Wed so she was not connected to the pump during the weekends. We were able to see continued shrinkage for quite some time and the treatment gave us precious time together. I think it is important to always be your own advocate.... ask all the questions, question everything you do not understand and always speak up. My mom was able to stay with us as long as she did because she was a tremendous fighter..... I wish you much success and good health to come!

Re: University of Chicago Trial FOLFIRINOX.

Dear Kristina916, Thank you for taking time to write to me.  It is difficult to lose a parent. You sound as though you are a loving daughter.  Each time we think about the passing of someone, they never die.  I believe in cherished memories.  I don't know if I have the courage of your Mom.  I'm sure you gave her strength to be strong and carry on.  I wish you peace and lasting loving memories of your Mother.  Sincerely, Pat

Re: University of Chicago Trial FOLFIRINOX.

Hi, I have Stage IV Cholangiocarcinoma, diagnosed 5/24/13.  I am thankful for the 62 years of my life where I enjoyed good health.  Today I was suppose to again make the appointment for installation of the port for the chemo therapy.  I made a personal decision not to put Cis+Gem in my body.  I feel these drugs will only add more problems to my heath issues.  I will keep the board posted as to how things are going.  The hospital tells me everyone is different.  This may be true but I believe if they have treated Cholangiocarcinoma and the outcome is good, they would share this information with other patients.  Without statistics and talking with people in a similar situation as mine, I cannot put my body through the side effects.  It's just not worth it to me.  I quit smoking in 1988, cancer was the farthest thing from my mind, being diagnosed 5/24/2013 was an absolute shock!  Putting chemo drugs in my body is even more terrifying than the disease itself.  I wish you all the best in your personal choice regarding treatment.  Pat/LadyLinden

Re: University of Chicago Trial FOLFIRINOX.

Dear Pat, to chemo or not to chemo is one of the toughest decisions anyone will ever have to make. My husband never had it before or after his Whipple procedure and after his final prognosis 5 years later the ONC said about 6 months was left and offered palliative chemo. Teddy asked him how much time it would buy him and the ONC said a month or so. Teddy thought about it for 3 days and decided no. We never regretted it. The decision was not lightly made and I know that our family here totally understands what a personal decision it is. If you are discontinuing treatment please keep us in your loop so that we can know how you are progressing.

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 Lainy, Yes, to chemo or not to chemo is definitely a tough decision! I am not a candidate for surgery.  I've second the opinion at University of Chicago's Hospital, Dr. Daniel Catenacci, who agrees with my diagnosis and treatment.  So your husband lived for five years without chemo?  That is wonderful to hear!  I've had to make a lot of tough decisions in my life, but I trust my judgment and chemo is not right for me.  I've had no chemo treatment and my goal is to ease my pain as much as possible.  I've contacted Hospice.  I will keep you in the loop.  Again, so glad to hear about your husband surviving five years.  He was a strong man, no doubt. Pat

Re: University of Chicago Trial FOLFIRINOX.

Pat,
While I fully understand the desire to not poison your body and deal with side effects, I hope you don't quit looking for something. If your quality of life is overall good, perhaps there is a trial similar to the one I am on. My side effects are acne-like hives on face and scalp. No nausea, no diarrhea, nothing overly hard to deal with. It is meant to keep me stable until something else can be done.
If you choose quality vs quantity of life, no one can fault you for that. Good luck with your journey and please keep us posted.

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.

Pat

I just wanted to add that my husband has been on Gem/Cis for
6 straight months without ANY side effects other than being tired for
a day or two afterward.

His quality of life has improved and he feels really really good.

Just throwing that out there, I have 'met' several others online that
have also had NO bad side effects from this chemo cocktail as well.

It is 100% your decision, I just wanted you to know that there
are people out there that are not having bad side effects from this
combo.

Best wishes.
dorien

Re: University of Chicago Trial FOLFIRINOX.

PS--if i remember correctly Lainy's husband survived the 6 months
without chemo--not 5 yrs without treatment.

Lainy?

Re: University of Chicago Trial FOLFIRINOX.

Dorieen, you are so right, lil grasshopper! I think I mislead Pat a little there, see you know me by now so you know what I am trying to say! HA
It's all these U.C. Meds, sorry Pat. Teddy had the Whipple, big success as 4 ONCs, Radmen etc said no to chemo as 8 years ago they just didn't do it so much with clear margins after a Whipple. So, 3 years later it did return where the Duodenum used to be, he had radiation to shrink it then Cyber Knife. Then 2 years later it returned to the same place again and we were told they could do no more. He started at 73 and passed at 78. Strong?? He invented the word, was very Sicilian and very strong. Loving? He invented that word as well. Second marriage and at least I got 16 years with him. It was June of 2010 that we were told the bad news, that is when he decided no more. He Passed Dec 6 2010. Thanks Dorieen

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.

I wanted to second Dorien.

My wife has been on Gem/Cis since April, and has had a great quality of life so far.  Very minor fatigue has been the only side effect.  The tumors are shrinking and her liver function is much improved. 

She told me the second cycle was easier than the first because the fear of the unknown had gone away.

Of course, everyone has to make their own decisions, but I did want to let you know that sometimes chemo can be well tolerated.

Best regards,

Jason

Re: University of Chicago Trial FOLFIRINOX.

Hi y'all, my 42 yr old daughter just got her 2nd opinion of CC from MDAnderson on Oct 30th; this is my first post and I imagine Alison will join us at some point. So I am very new, in fact so new I haven't even figured out how to post an introduction on the board. She has an 18month old and elected for Gem/cis, which is scheduled for this Tuesday. My understanding is that the primary is the bile duct and that there are multiple lesions that have mets.in the liver, on both sides, and is inoperable. I'm not sure if the "both sides" equates to the term "multi focal" that appeared as a possibility on her liver biopsy report. We are investigating trials and also pursuing other opinions on surgery and/or possible transplant down the road.  In the meantime, with chemo in 4 days, I was wondering if there is anything we should do to prep her ahead of time for nausea, etc. I hear hydration is very important. I hate that we've been assigned as members to this elect group, but having read several of your posts, I already "feel the love". Thanks, Ceci, Lafayette LA ( I hope to figure out how this discussion board works!)

Re: University of Chicago Trial FOLFIRINOX.

Hello Ceci and welcome to our fabulous family but sorry you had to find us. It really saddens me to read of yet another 'younger' member. May I ask where Alison is being treated? We have had members with similar diagnosis and chemo did bring them to a point being able to have surgery. It does sound like you have done your homework! Hydration is extremely important and I believe something for Nausea is also needed (my husband never had chemo) so I would call the ONC Monday morning and ask about something for nausea. Now the Journey begins. You will get lots of help here so ask all the questions you want.
If you go to our HOME page there is a list of categories and the very first one says INTRODUCTIONS. Just click on it and then click on New Post and there you are. In fact I don't want you to get lost here and not have people see this post. You can COPY what you posted and just move it over to Introductions.  I want to wish you and Alison the very best for Chemo day. And of course please keep us updated as we truly care.

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.

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

Re: University of Chicago Trial FOLFIRINOX.

Ceci -
Welcome to the best family no one really wants to be a part of and so sorry you had to join us. My husband was diagnosed in May with CC. We are now halfway through his chemo....doing the midway scan next Friday. So far chemo has not been a problem for us.
Some of the prep for the chemo depends on whether your daughter has a port or not. If the has a port for chemo then I wouldn't worry too much about the getting things started. If she does not have a port and they are going to have to start an IV I would suggest making sure she is well hydrated prior to chemo and no caffeine prior to getting the IV started. We had a lot of trouble after my husband had his port pulled with getting an IV started so that is our routine.
Also they should give her nausea medications to take after the chemo. My husband has Zofran (ondansetron), Dexamethasone and Prochlorperazine along with Lorazepam. He was given instructions to take the Zofran and Dexamethasone twice daily for two days and the others as needed although they recommend that he take the prochlorperazine every 6 hours which he does. No nausea with this plus they give him plenty of stuff prior to chemo.
Good luck and keep us posted.
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.

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

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

Re: University of Chicago Trial FOLFIRINOX.

Oh gosh, you all are wonderful to all share so much! Alison will be using an IV for her first few chemo treatments, and maybe moving to the port later. Is the port all the way inside, with skin covering it, or is it the dangling type? Which do you recommend when the time comes? Alison was first diagnosed in Baton Rouge under the care of oncology Dr Castine. We then got over to MDAnderson with Dr Rachna Shroff. They both indicated pretty much the same. (Shroff did give us a sheet with nausea meds to get ordered, but I was looking for confirmation from the warriors themselves! Now have it!) all the tests (CT,  bone scan, colonoscopy and endoscopy indicated no spreading. Metastasis appears only in the liver, but apparently in several tumors, such that they both indicated surgery was not an option. Dr Shroff indicated that Alison would not be able to get off chemo.... She left the door slightly ajar that if Alison's chemo went well with no new growth.. And maintained stabilization for 6-10 months, then "possibly" she may be able to get her name on a transplant list. Shroff referenced another young woman over there (younger than Alison's 42) who has been doing well, as described, and has gotten her name on the transplant list, however, she was willing to accept a "tainted" liver - I assume to get her name higher on the list. Shroff told us not to be thinking transplant, but to focus on the chemo for now. We are going to explore on our own- and I've already learned so much from this sight. Alison indicated she didn't think she was ready to start this kind of discussion; it may get her down. So for now, you guys get only me!! Merci beaucoup!'

Re: University of Chicago Trial FOLFIRINOX.

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.

Re: University of Chicago Trial FOLFIRINOX.

Ceci You are fantastic! You have really taken to this like a super star while I know your heart is breaking. But again we have had things turn around for members in Alison's position. Knowledge is the most powerful weapon we have against CC as it is truly a crazy monster. I was on here for 5 years with my husband's journey and he Never came on. Some people prefer not to but ALL our members are the bravest, most caring people the world over as you have already seen. I don't see anything wrong with thinking of a goal such as a transplant as long as you stay realistically optimistic. Sending good vibes and lots of juju for Alison to sail right through her chemo, please keep us posted.

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.

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

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