New to this group – stage III/IVa ICC
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Oh….I LOVE that Cookie Monster quote and think I will adopt it. Cookie Monster is our all time favorite. Nom, nom, nom….nom!!!
Julie T.
I just realized that I should have proofed my post from last night – I typed it on my phone. “I will have to post an update again next week when me know more.” I sounded just like Cookie Monster! … which leads me to recall something that popped up in my Facebook newsfeed recently. It’s a picture of Cookie Monster with this quote: “Today me will live in the moment unless it is unpleasant, in which case me will eat a cookie.”
I ate several cookies yesterday. Today I’m back on the positive train. I am no worse off than when I started this cancer business. Just because the tumor didn’t shrink doesn’t mean there’s not hope. And if Cookie Monster can make me chuckle, so much the better!
Thanks for that Elaine and great news re stable size of tumour! I do hope that you will get good news nest week about the surgery, my fingers are crossed for you with that one! Please let us know what they tell you, we are here for you.
My best wishes to you,
Gavin
Elaine, no growth is a good sign! Time to enjoy the Holidays this weekend, whatever you celebrate.
Always good to have family together. Please let us know what Mayo says, we truly care.Turns out there was no change in the tumor at all. It didn’t grow, so that’s the good news. We will meet again next week with the surgeon to discuss surgery further. That is the direction we are leaning, as it offers better long-term survival than chemo. The surgeon needs to do some volumetric calculations to determine whether to embolize the blood supply to the diseased portion of the liver. I will have to post an update again next week when me know more.
I am also strongly considering asking the doc at Mayo to review today’s scans and offer another opinion.
I will let you know what I learn in the near future.
My husband and I did go to Mayo for a second opinion in January. I’m sorry for omitting that part from my previous posts.
The oncologist at Mayo confirmed what we had been told in Minneapolis – that chemo is the standard treatment for ICC – and said that’s what he would do if he were treating me. He had seen my scans and reviewed the treatment plan for the clinical trial (I had already begun treatment) and said that he thought we should continue with that as it seemed reasonable and offered some hope for a future resection.
The Mayo oncologist also said that it’s difficult to get a liver transplant to treat ICC. I believe it’s because of the high risk of recurrence and lack of available livers. We didn’t talk about a living donor.
We were not expecting any miraculous offers of different treatment. We left it open with Mayo – if the doctors in Minneapolis don’t see the results needed to get me to the operating room and don’t have a treatment plan that they think will be beneficial, we will likely return to Mayo to see what they might offer. The good news is that, unless you’re in a clinical trial at Mayo, the treatment can be “imported” to the hospital in Minneapolis so I don’t have to travel each week for treatment.
Sorry to hear about your diagnosis- I have the Intrahepatic Cholangiocarcinoma also.
Wishing you only the best!!! I am 52, and have been going to Mayo since Aug 2014.
I encourage you to get an second opinion. Only you will have your peace of mind then. I’m from the Chicagoland area, and have been traveling there almost monthly. Was listed on the transplant list. They are trying to manage the Cancer now. Just did TACE- i do not know the results yet. I was advised to seek a living donor. A car drive away to get an second opinion is worth your time, please consider it.In my thoughts and prayers.
From one Elaine to another……YIPPEE! I love waking up to this fabulous news. Yes, you are so right that we LOVE the word surgery! You have a great attitude and lots of hope and that wins every time. Much good luck on your Monday Scans!
Congratulations on getting that treatment done. I sure hope that the scans on Monday will show tumor shrinkage…and while we’re at it….I’m hoping for HUGE tumor shrinkage….and for sure enough shrinkage to allow surgery to proceed. Please post again and let us know the results of the scan, if you would. Prayers for a date in the OR in your future very soon.
Julie T.
I wanted to post an update. I completed my treatment this week – four cycles of gem/cis with low dose radiation under the clinical trial at Abbott Northwestern in Minneapolis. The goal was to shrink my tumor enough to make it resectable. I will have CT and MRI scans on Monday to see how the tumor responded. To recap, the tumor was 12 X 10 x 9 cm on the dome of the liver and had invaded the portal vein. I am hoping to be heading for the OR soon, which is a strange thing to say, but as I’ve read elsewhere this is a group that likes that word. I will post another update when I know more.
Welcome Elaine,
I was diagnosed in 2010 stage IV icc. I always suggest a second or third opinion from a multidisciplinary team at a medical facility that has treated cc before. I have read so many articles about radiation not being effective for cc but I had SBRT three times and the treatment killed four tumors.
LisaHi Elaine,
Welcome to the group. This is a wonderfully caring and knowledgeable bunch of people, with resident experts on just about any CC related topic one might seek advice on. Sounds like you are doing everything you need to be doing to be on top of your situation, especially consulting with one of the major US medical centers that has expertise in CC.
My husband, age 54, was diagnosed in May, 2014, with unresectable Perihilar CC. Both of the second opinions we received (John’s Hopkins & Cedars Sinai) concurred with the diagnosis but strongly encouraged us to work toward becoming resectable via chemo or radiation. While our primary care doctors essentially wrote my husband off – steering him to palliative care, we forged ahead with a positive attitude. The chemo was modestly effective (five rounds Gem/Cis), slowing the progression. However, our third second opinion was the charm. A top surgeon at UCSF proposed a radical, but potentially curative surgery. After a great deal of consideration and research, my husband decided to proceed. He is scheduled to undergo an extended right hepatectomy with portal vein and bile duct reconstruction in mid January. We are not expecting miracles (although that would be nice
As we have from the beginning, we are taking one day at a time, evaluating the best option at that point and proceeding. So far this strategy has worked well for us.Sounds like you have a positive can-do attitude as well. Keep in mind that there are many different options available to CC patients and new discoveries and potential treatments are surfacing all the time. I wish you the very best in your journey with this insidious disease and will be praying for you.
debbie
Elaine, yea! Glad to hear it, you are right on top of everything and that is good news. Hoping for the very best!
Wheels are in motion for a second opinion at Mayo (I even have a patient number!). However, we don’t want to wait any longer to begin treatment, so we’re forging ahead in Minneapolis. I will still travel to Rochester once we’re able to get that appointment set.
Thanks for the warm welcome everybody. It sucks that we all are here, but I’m glad there’s a community of people who understand.
Hi Elaine (also my given name) and welcome to the best place to be for CC support. One of the best things you can hear from your ONCs is that they want to get you to a point of surgery in the future. We are a weird lot and love words like surgery and stable. Yes, you do have many things on your side and one of the best is your attitude as attitude is everything! I also agree totally with Matt about Mayo and would give some thought to a back up opinion.
Just want to say that my Mom was born and raised in St. Paul and I have lots of cousins there. Most of them are gone or much older than you but every summer we would go to see my Grandpa. Glad you joined us as we are all here for you!
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