November 2, 2013 at 4:01 pm #75091
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.November 2, 2013 at 1:08 pm #75090ceciliaroseParticipant
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!)September 4, 2013 at 11:33 pm #75089jscottMember
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.
JasonSeptember 4, 2013 at 6:15 pm #75088
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 DorieenSeptember 4, 2013 at 6:02 pm #75087thebompie4Member
PS–if i remember correctly Lainy’s husband survived the 6 months
without chemo–not 5 yrs without treatment.
Lainy?September 4, 2013 at 6:01 pm #75086thebompie4Member
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
dorienSeptember 4, 2013 at 4:55 pm #75085kris00jParticipant
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.September 4, 2013 at 4:53 pm #75084
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. PatSeptember 4, 2013 at 3:49 pm #75081
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.September 4, 2013 at 3:08 pm #75083
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/LadyLindenSeptember 3, 2013 at 11:11 pm #75082
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, PatSeptember 3, 2013 at 5:44 pm #75080kristina916Participant
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!August 28, 2013 at 12:25 pm #75079lindarParticipant
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.August 28, 2013 at 5:59 am #75078gavinModerator
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,
GavinAugust 27, 2013 at 8:51 pm #75077
Yes, he is the oncologist I am seeing.
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