Gem/Cis v. Folflorinox
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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.
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!!
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.
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
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. [][][][][]
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
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.
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!
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.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.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!
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.
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 blessCarl,
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.
LisaPCL1029,
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.
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