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Heather,
Sorry I can’t answer your question, but would you mind telling me more about Gordon’s experience with FOLFORI? My mom was on gem/cis chemo for about two months, but after her latest scan, her doctors want her to switch to FOLFORI. How long was Gordon on it? Was he also on gem/cis previously?
Thanks in advance, and happy new year!
Caroline
Lainy,
I guess you and I posted at the same time — great minds and what not! Thank you so much for your kind words. I don’t feel alone thanks to you all. I am so so grateful.
Caroline
Thank you Randi and Darla for your comforting words.
Percy, thank you so much for your advice. My husband and I immediately started looking for clinical trials, and here is what we found, if anyone else might be interested:
http://clinicaltrials.gov/ct2/results?term=cholangiocarcinoma&recr=Open&no_unk=Y&pg=1These are active and open trials for cholangiocarcinoma. The clinical trials for photodynamic therapy seems especially encouraging and hopeful. I contacted a few of them and will keep you posted.
I also spoke to my mom’s medical ONC, Dr. Latif, and felt much better afterward about the next step, whatever it may be.
I feel so blessed to have the support of this board. Thank you, thank you. Happy New Year to you all.
Caroline
I feel sick to my stomach right now.
Dr. Fong just called to say that he got the scan results from the radiologist, and what he said yesterday wasn’t true.
Not only did the tumor get bigger but there are now spots on her intestine and liver & her lymph nodes are also bigger.
Radiation is now out of the question and she may never be eligible for surgery. Dr. Fong kept saying, “It’s not good news.”
He is now recommending FOLFIRI chemo for two months. I asked him about the success rate of that, and he said 15-20% as opposed to about 30% for gem/cis.
I feel so shaken and lost. Do you have any advice for us? We’re now thinking of getting a second opinion. But what will that do to her tumor if it’s left untreated?
Caroline
Thank you, Lainy, Kris, and Marion!
The earliest appointment we could get with Dr. Goodman was 1/23, so Dr. Fong thought we should try to get an earlier appointment with someone else. And that someone else is Dr. Abraham Wu, whom my mom will be seeing on 1/10. Kris, do you know anything about him?
We have a follow-up appointment and scan with Dr. Fong in March, and I’ll be sure to report back on that.
Marion, one of the wisest things (though there are too many to count) I heard on this board is to think of cc as a chronic disease that one can manage to live with. I am going to try to share that wisdom with my parents (in a gentle way) before leaving New Jersey in a week or two.
Thanks again!
CarolineDear Lainy,
Thank you so much for your reply. It really helps to know that what I’m feeling is common enough that it has its own name! I also call or text my mom at least once every day, and after reading your reply, decided to give her a call even though I had already texted her. It turns out, she’s been experiencing new pain that she hasn’t felt before, which is probably scaring her. It’s not exactly headache but related to her head region. I will have to bring this up with her surgical ONC for sure.
This brings me to a related question about her medical ONC. We like her a lot, but cc is not her specialty. In fact, her specialty is breast and gynecological cancers. Her location in Basking Ridge is very convenient for my parents, but I wonder if that should be an overriding concern right now. Maybe I can tactfully ask the surgeon in NYC, where we are going for the scans on Monday, whether or not he would recommend my mom’s continuing to see the non-cc specialist in Basking Ridge? I guess it’ll really depend on what the scans say. In any case, I will keep you posted on the appointment. Thank you again!
Caroline
Dear Suz,
I am so sorry for your loss after a long and difficult journey. My prayers are with your sister and your family.
In love and sympathy,
CarolineIn addition to all the helpful answers, here is something from Sloan-Kettering on this topic just in case anyone else in the future might have the same question I did.
http://www.mskcc.org/blog/will-i-become-addicted-pain-medications-i-may-need-during-my-treatmentHi Stacie,
I’m so sorry to hear about your mom. I think when my mom was new to her disease and treatment, too much information was overwhelming for her. But as she’s getting more used to everything, she’s been wanting to know more. When I first came on the discussion board, one of the members (I think it was Marion) said knowledge is power, and I agree.
I hope both you and your mom find peace and strength during this difficult time. I’m sending a big warm hug your way.
Caroline
Dear Patricia,
Your original post resonated with my doubts about my mom’s treatment, and I found it very helpful. I think you are really honest and brave for having posted it. Thank you.
I am very sad to hear about your experience on gem/cis. I’m sending you warm thoughts for strength and peace.
Caroline
Dear Percy,
I also wanted to echo what everyone else has been saying. In the short time I’ve been on the discussion boards, I’ve been finding all your posts incredibly helpful and informative. What I find especially awesome is that I can sense your love and compassion behind the research that you do for all of us. Thank you, and I’m sending a big hug your way.
Caroline
Dear Denise,
I’m so sorry for the roller coaster you’ve been going through. I agree with everyone else about crying. You’re not crazy! I love picturing Lainy crying and singing at the same time. Sometimes I drive on the freeway and just scream really loudly. I probably look crazy doing it, but it helps. I’ve seen my mom cry just once or twice since her diagnosis, but the one time she cried, she cried loudly. It was devastating to listen to, but I think it made her feel better.
I said this in another post also, but as a child, I think it would frighten me to talk about dying with my mom. When my mom mentions dying in the most remote way, I tell her not to talk that way. It’s a defense mechanism. Maybe it would help to talk to someone about how to talk to loved ones about dying? I’m sorry I don’t have something more helpful to say. Mostly, I wanted to let you know how much I’m thinking of you and praying for you.
Caroline
Dear Michele,
I was my mom’s primary caregiver for a month until my dad took over, and my heart truly goes out to you. I cried a lot when I was living with her, but I must say that I haven’t been crying as much after I came back to my own life. You’re in the thick of your husband’s pain, and I can only imagine how you must feel.
As a child, I think it would frighten me to talk about dying with my mom. But she has been making offhand comments about it from time to time, to which I would inevitably respond by saying she should be thinking more positive thoughts! Reading your post enabled me to see once again her illness from her vantage point — something I often forget to do. Thank you for sharing, and please know that my thoughts are with you.
Caroline
