Topic: Gem/Cis v. Folflorinox

My wife was recently diagnosed with non-resectable ICC. We have gone to 2 outstanding Cancer Centers for consult visits prior to starting treatment. We thought she might qualify for an interesting clinical trial, but sadly the trial (Phase 1) is on hold.

We heard a common message for the treatment plan (Gem/Cis) from these specialists. But yesterday, we learned about Folflorinox as an alternative chemo plan. My quick reading indicates this has generated more documented information for pancreatic cancer (which the doctor told us) and the success rate seems to be better for those who can manage the side effects. The doctor said my wife would be a good candidate as she is young (56), fit and otherwise healthy.

Can you share your experience, thoughts, and ways to prepare for Folflorinox treatment. It would be greatly appreciated.

Thanks,
Carl, aka Scheitrumc

Re: Gem/Cis v. Folflorinox

Hi Carl. My husband had a resection for ICC in November 2011 but it recurred in September 2012. His oncologist sent him for a consultation at the U of Chicago where they were doing a Folfirinox trial. My husband wasn't eligible for the trial but the two oncologists recommended he try Folfirinox anyway. His first treatment was on November 1, 2012.  He had very few side effects for the first eight weeks but then began experiencing more serious problems with diarrhea and fatigue as well as neuropathy.  After my husband had completed sixteen weeks on Folfirinox, the doctor modified the treatment somewhat by reducing the dosage of one of the drugs and eliminating oxaliplatin. These changes greatly reduced the side effects and the recent scan showed that the tumors are still stable.
My husband is ten years older than your wife but he was able to handle the side effects pretty well and has kept working full-time throughout the treatment.  However, each person reacts differently and Folfirinox is a very tough regimen that many people are unable to tolerate.  The data seems to show that it is the preferred treatment for pancreatic cancer but research on its effect on cholangiocarcinoma is limited. Best wishes to your wife.

Re: Gem/Cis v. Folflorinox

Dear Carl, I am not proficient when it comes to Chemo as my Husband never had it but I want to wish your wife much good luck and it sounds like you have a good and aggressive ONC. Read up as much as you can on Folfirinox as knowledge is our best tool for fighting CC. Wishing you both the very best and please do keep us informed of her progress 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.

4 (edited by PCL1029 Thu, 02 May 2013 19:36:14)

Re: Gem/Cis v. Folflorinox

Hi,
If the diagnosis for your wife is ICCA, and  if I were her, I will start the 1st- line chemotherapy such as GEM/CIS first. and if it is not working later, then I will start the 2nd-line chemotherapy such as Folflorinox. You can get some ideas about the toxicity of each regimen like GEM/CIS and Folflorinox by combining
each individual drugs(GEM/CIS=gemcitabine+cisplatin) and (Folflorinox=5FU+oxaliplatin+irinotecan,the folinic acid is not a chemotherapy agent).

http://www.cholangiocarcinoma.org/punbb … 198#p57198

I think your doctor's original suggestion of GEM/CIS and radioembolization is a logical  and good combination choice for non-resectable ICCA.

But I think you have had made up your mind already. So good luck and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Gem/Cis v. Folflorinox

Thank you for your responses.

PCL1029, as of now, we have not made up our mind. In fact, we are still on schedule to begin the Gem/Cis treatment this Wednesday. We have reached out to the Oncologist from our first consult to ask her the same question. When we met with her, she suggested Gem/Cis to start and had mentioned the names of 5-FU and oxaliplatin as possible alternatives to the Gem/Cis. That was the first time we heard of these drugs (I am still naive and trying to learn more every hour about this disease). Then when the second consult introduced Folfirinox, it triggered some thoughts that we've now heard about these alternate drugs twice and this treatment plan had better (relative) success.

The doctor was very confident that Folfirinox would have similar effects with ICC as it had with pancreatic cancer. He did say he would only recommend this to patients who are otherwise healthy because it has potentially more side effects.

We do need to make this decision today and the reason we are considering the alternate plan is to take advantage of whatever strengths we have to fight this disease. If my wife's physical health is a current strength, we want to use it to its fullest.

Your feedback is truly appreciated.

Re: Gem/Cis v. Folflorinox

PCL1029,

As a follow up question, could I ask you what is your reasoning for recommendation of Gem/Cis first? Is it related to the effects of the chemo or lack of evidence that Folfirinox is a better alternative for ICC?

As mentioned above, I consider myself still in the naive stage and I am trying to find the right path. I am learning that it seems there are two chemo foundations for these types of cancers. Either Gem based or 5-FU based. I have not yet learned why or what the benefits/weaknesses are of one v. the other. My head is still spinning.

As many of you have already gone through, all of a sudden there are not enough hours in the day. I cannot learn quickly enough all the things I wish I already knew about this disease.

Take care.

Re: Gem/Cis v. Folflorinox

Carl,
I had a liver resection in Sept. 2010 followed by six months of chemo and I had the Folfinox. I tolerated it very well, just some nausea and fatigue. After my second resection I had the Gem/Cis and I did not feel as well on this chemo but it was tolerable, nausea, fatigue, heartburn and neuropathy. My body has not responded to chemo as well as others. I have had good results from steriotactic radiation . If you want to chat please feel free to call me at 330-903-6868.
Lisa

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

8 (edited by PCL1029 Fri, 03 May 2013 19:05:03)

Re: Gem/Cis v. Folflorinox

Hi,
Even many of the chemotherapy for ICCA are derived from treatment of pancreatic cancer due to the fact that CCA is a rare disease and there were  no standard  protocol for CCA  treatment as recent as a few years ago until the ABC trial shows that gemcitabine+ cisplatin had a better response than gemcitabine alone . The overall response rate for GEM/CIS is about 28-32% for CCA . Currently it seems GEMOX( gemcitabine+ oxaliplatin ) is used more often because of GEMOX is less toxic to the kidney.(  cisplatin,oxaliplatin and carboplatin ,all belong to the PLATIN family.)
We are treating CCAand not pancreatic cancer  and that is one reason for me to use GEM/CIS protocol. I do think the Folfirinox will work too, but I regard the treatment plans of treating ICCA is a war and not a battle, especially your wife is in good condition health wise base on what I can understand about her case from your messages. The long term side effects of.Folfirinox  are accumulative ,  I do not know how long your wife will be on it once started,since it is NOT used in the context of ADJUVANT  therapy, therefore most likely ,if the regimen works ,it will be used until the tumor shrunk enough to allow radiation treatment or surgery ; or until disease progress or intolerable side effects occur. But what if the side effects are too much for your wife to take and she get discouraged to use other chemotherapy regimen or targeted agents in the future. And this is my other reason not to start with Flofirinox first.
The best outcome for unresected ICCA is the chemotherapy works to allow surgery or radiation treatment like SBRT or radioembo. It will take a while ,in a couple of years if not in months to go from unresectable ICCA to all CT scan clean without trace of any tumor in the body.
God bless

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Gem/Cis v. Folflorinox

You are a special person to be able to communicate so well and show compassion at the same time. Thanks for taking the time to respond.

By the way, we have decided to start with the Gem/Cis plan. I had a great discussion with the doctor from Fox Chase Cancer Center. The doctors view was directly focused on the toxicity of the Folfirinox and its potential harm to the liver. The recommendation was confirmed to start with Gem/Cis to reduce the existing tumors in the liver. That must happen first and in the doctors view, it was not worth the risk of liver damage to go with Folfirinox in this initial process.

By the way, is it okay on these discussion boards to refer to specific doctors and treatment centers by name ??

Thanks so much. You are incredible helpful.

10 (edited by Lainy Sat, 04 May 2013 08:50:35)

Re: Gem/Cis v. Folflorinox

Dear Carl, you are so right about PCL, just cannot say enough good things about this amazing man, we are so lucky to have him, this is an extroadinary Board, one of a kind. I want to let you know that our Kris00J has been a member for a few years now and she was going to an excellent Hospital where things were not setting right with her, recently switched to Fox Chase Cancer Ctr and feels great about them plus it was closer to her home. This is an open Board and by your sharing your feels with other members helps us all. Wishing your wife the very best on starting her Gem/CIS. Please keep us advised on her progress 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: Gem/Cis v. Folflorinox

Hi, Lainy,

You are too nice to say such good things about me. Thanks.
I also read the messages and info links  posted by Gavin and others as well, their behind the scene contributions are as valuable to me as to other readers who need to know. they are my unsung heroes ; and the same to you and others who express their emotions,telling their stories , sharing their wisdom and wit.
Like today for example, I did research almost for 8 hours now;The medical articles are so dry and I am truly tired of them and when I stopped by here to check messages, I came across one of your poems; it helps to relax me and gives me a chance to take a break. See, Lainy, you don't know you have such a powerful presence  among us even when you are off this message board for just a while.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Gem/Cis v. Folflorinox

Oh my, Percy. I thank you kindly. I think the bottom line here beside all of us becoming like FAMILY we all have the same compassion and are all very passionate about our cause. And many thanks to our real Board in SLC and to our special Angel, Marion. Without Marion I would never have got through those 5 1/2 years with Teddy.  You don't know but she and Teddy fell in love! smile:) So we all played a big part in this and honestly have you ever seen so many wonderful and caring people in all your life?
P.S. I had the craziest idea this morning on a way to raise money. Now you know that means trouble. I was thinking someone could go way back which would be about 7 years ago and could write a book, telling the stories of our CC. No names would be used but each story and how it ended is something else. The proceeds would go to our Organization. I know its crazy.

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: Gem/Cis v. Folflorinox

What a great idea Lainy!! I do like your crazy ideas but this one ain't crazy, it's brilliant!!! smile

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: Gem/Cis v. Folflorinox

Hey ya think? Gav. I am thinking the words are already there. Just have to tweak a little. Since there would be no names I don't think anyone would mind and it would also be a permanent Memorial and raise money. Hardest part would be coming up with the Title. Can you imagine with the right Manager the book could be promoted on TV shows also giving us a chance to get our CC. Org out there even more. Dream big! Who me? Always.

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: Gem/Cis v. Folflorinox

Lainy,

I think that's a great idea!!!  And not really far-fetched either since lots of people have done it for their causes and seem to have done well.  Ok, they've been mostly famous people - Michael J. Fox, Lance Armstrong, Sheryl Crowe, Katie Couric to name a few but we have some pretty knowledgeable people here and I bet some really good writers who would be up for the task!!!  Even though I'm fairly new to this site, I would definitely be willing to share my story for the cause.  It's so frustrating trying to explain CC to people and it's scary that the medical world, although working hard for more treatment options, finds it very difficult to treat.  We sure do need more awareness of CC.  With the right manager it could be promoted well and bring about the awareness we need.

Keep those ideas coming Lainy!!!

Mary

Re: Gem/Cis v. Folflorinox

Mary, I was thinking of also mingling some of the Introductions posts. Years ago I did collect 35 letters to send to Oprah and we were a much smaller group then. Of course she ignored it. Celebrities! I know, but we are above Celebrities, we have nothing but Heroes here. Thanks and I just wrote you on another post as to how you are doing. Sending major hugs. [][][][][]

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: Gem/Cis v. Folflorinox

Starting with introduction posts is a good idea Lainy.  I think talk shows now are more inclined to bring "the little peoples'" stories to light.  Who knows, maybe we could get coverage from the Ellen show or the Katie Couric show.
They are the two I can think of that have shown "regular" peoples stories in the past.

Thanks for the hugs - I really need them!!!

Mary

Re: Gem/Cis v. Folflorinox

Mary, when I had sent that stuff around 7 years ago, Ellen was one I sent to and never heard back from anyone. I even sent to CNN, Fox you name it I sent it. I think we would need a Manager of some kind. Well its all just an idea.

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: Gem/Cis v. Folflorinox

Major grrrrrr to Oprah and that Ellen person for ignoring us, stuff em!!! Can't believe that it was all these years ago that you sent them the letters Lainy, time sure flies in does it not!

And yes, I do think that your idea of a book or something like that with all of our stories is a very good idea. It could be called "Our Stories" or something like that and wouldn't that be good if it could be done and published for a February! And maybe then they will come to us wanting to do something with the stories instead of you sending the letters to them!! smile

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: Gem/Cis v. Folflorinox

Ha, Gavin, that's what our kids are for, to give the parent a vote of confidence. Thanks. Not sure how it would all work, yet.

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.