January 11, 2017 at 10:00 pm #93488mattreidyParticipant
Welcome! You asked about the best places to go. My personal favorites are MD Anderson, Mayo, MSK, Hopkins, and Mass Gen.
Have you gotten genetic results back yet?
There is hope! See my story here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456November 29, 2016 at 3:32 am #93480kbyrnzParticipant
I have been doing pretty well on the gem/cis. I just had my 6th appointment of chemo today ( 2 weeks of chemo and one week off) and with the steroids, anti-nausea meds and fluids , I haven’t had really any side effects besides for bad fatigue the day after and a little bit of discomfort in the blood vessels in my arms that they are using for the chemo itself, but since you have a port you won’t have this problem. Chemos #1 and #2 were pretty uneventful but I started noticing hair loss after #3. I have thin hair to begin with so I have noticed a significant loss…I bought a wig.
One thing that I can recommend is to rest when you need to. The day after Chemo I need to go to bed as early as 7:00 on some weeks. Accept as much help from family/friends to make your life easier. I had a family member make a bunch of meals that she froze so when I get home I don’t have to make dinner. Since I usually don’t feel like eating in the morning I have found that an ensure/boost/carnation instant breakfast is an easy way to in calories and hydration.
I have an appointment for a second CT scan next week to see if the chemo has shrunk my tumor and the satellite tumors in my liver to hopefully schedule my resection in the near future. Have you gotten a second opinion? Even my oncologist has said that some surgeons are more aggressive than others. Wish you well!
KatherineNovember 27, 2016 at 9:11 pm #93486googilyMember
Danielle, my husband (age 54) absolutely sailed through gem/cis, thanks probably to the steroids, the fluids, and the anti-nausea meds. Everyone is different, of course, but these days doctors know a lot about how to handle the side effects.November 27, 2016 at 7:08 pm #93485middlesister1Moderator
I am glad you found us but truly hate when someone so young is diagnosed with this disease. However, my mom who was 73 at the time was able to tolerate the Gem/Cis, so I’m hoping it will be a piece of cake for you. The first cycle was the hardest, but then they adjusted her fluids and meds (added steroids) and she was able to go without anti-nausea meds at home.
There is a chemo therapy topic on the discussion board, and you might also find the below conversation of help; it’s pointers for first day of chemo.
CatherineNovember 27, 2016 at 12:50 pm #93487danidellParticipant
Thanks to all for your open arms and advice. Apologies about the multiple posts — I was having internet issues and just kept hitting submit. The excess posts should be gone now. My biopsy slides are currently at a lab for molecular testing, so that stream is set into motion. I also did come across the adoptive T-cell therapy trial that Marion mentioned, and I will follow up with the contacts you provided. Many, many thanks! There may be another discussion board topic on this, but I’d also love to hear feedback on side effects/tolerance of the gem/sis chemo combo. I know everyone responds a little differently, but I’d like to get an idea of the spectrum. Again, thank you for welcoming me so graciously.
DanielleNovember 27, 2016 at 7:18 am #93481marionsModerator
Oh, I forgot to mention that Gavin is able to delete your additional postings. Feel free to delete yourself, but know that they may magically disappear as well. In any case, if you don’t get to it our Gavin will do it for you.
MarionNovember 27, 2016 at 7:15 am #93482marionsModerator
Danielle…..I would like to follow Lainy and googily and welcome you to our group. We are happy you found us.
You are ready to go (port installed) to begin with 1st line treatment of gem/cis. Fingers are crossed for a great response with few or no side effects.
I believe that all patients should line up 2nd line treatment as soon as possible, because at one point you will become resistant to 1st line. And, this is where numerous options become available. As googily mentioned, molecular testing always should be considered it does however require a biopsy.
You should check with your insurance carrier and see whether you are covered for molecular testing.
You may also want to look into the NIH trial adaptive T-Cell trial.
This is the trial:
Contact: Jessica G Yingling, R.N. (866) 820-4505 firstname.lastname@example.org
Contact: Steven A Rosenberg, M.D. (301) 496-4164 email@example.com
As Lainy mentioned, I too would consider keeping the appointment with John Hopkins. It’s coming up soon and it is unlikely for any other major institution to see you at an earlier date. Following the Hopkins consult, you can always make additional appointments with other large institutions treating a large volume of cholangiocarcinoma patients.
In the meantime, good luck with your first infusion. Know that you have a tidal wave of good wishes heading your way. Please keep us informed, we care and we are in this together.
MarionNovember 27, 2016 at 5:11 am #93483googilyMember
I’m so sorry you’ve had to find this board, and at such a young age. Your story of your diagnosis is staggeringly similar to my husband’s, just a few months before you. He was seen by the liver team at Hopkins, and did his gem/cis at Sibley (owned by Hopkins). Has genetic testing on your tumor been started yet? That is really the most important step at this point, because if you have a mutation that there are promising trials for, you will want to be ready to take that next step at any first hint of gem/cis losing its effectiveness. (My husband’s CC has a mutation that has led us to a clinical trial in Philadelphia.)
And I certainly know what your husband is going through. Hopefully you will both be strong for each other, even if a lot of times it’s not at the same time (one is strong when the other is feeling weak).
Spend a lot of time reading and searching these boards–the information here is fantastic.November 27, 2016 at 4:00 am #93484lainyParticipant
Dear Danielle, welcome to our remarkable family and the best place to be for CC. You are headed in the right direction with either Sloane or John Hopkins as both are experienced with CC. Please do not listen to nay sayers and statistics as we have had quite a few patients on here who were DX at Stage IV and told no surgery. After chemo, usually GEM/CIS the tumors were shrunk enough to have surgery. Yes, I would keep the John Hopkins appointment. You are just beginning but I swear that once treatment begins the fright will turn to fight. The only thing I can tell you about hubby is what mine told me when he was DX. He steeled his mind for what lay ahead and asked me to be strong for him. I was and we tossed in lots of humor and that really carried us through the next 5 years. You also have age on your side, my husband was 73. So put on your pink boxing gloves toss them with glitter and fight away.
May I ask a favor of you to delete your duplicate posts or posts to you will be highly scattered instead of running a nice long thread under one post. Below is a site you may find helpful and please keep us up to date on your progress.November 27, 2016 at 3:46 am #12795danidellParticipant
I just read Katherine’s post and was shocked to see another 36-year-old female with CC. I, too, am 36, and I’ve never had cholitis or any of the other known risk factors. I was just diagnosed Nov. 2 after having a couple of isolated episodes of upper right quadrant abdominal pain over the course of the summer, for which I sought immediate care. The first time, an Urgent care doc gave me an inhaler (that guy deserves some sort of award for most useless doctor). The second time, an ER doc told me I likely had an ulcer (all my bloodwork came back normal), prescribed me ulcer meds, and the pain went away in 24 hrs. Fast forward to late October, when a combination of very mild symptoms (early satiety, occasional abdominal discomfort) finally prompted me to see my primary physician. An ultrasound followed by a CT scan revealed multiple large lesions on my liver (one is 10 cm) and small metastases in both lungs. No jaundice or anything like that, yet one oncologist told me my liver is almost completely covered with tumor. I’m working with an oncologist at Medstar Georgetown in DC for now who has diagnosed me with stage IV intrahepatic cholangiocarcinoma, and I begin gem/sis chemo on Monday. Already got my port and ready to go. I must kick this thing’s butt, despite all the dire stuff I’ve read online. Two surgical oncologists (and my own medical oncologist) have told me I’m not a candidate for surgery. My oncologist also told me that even if the gem/sis was able to knock out the lung mets (I realize that’s a big if), I would also not be a candidate for a liver transplant, which doesn’t seem to jive with some of the posts I’ve read from others. I think i eventually need to get to a bona fide CC expert but for now it seems most important to just get started on the gem/sis close to home. I’ve started reaching out through my network to Johns Hopkins and the NCI about possible trials. I also have an appt for a consultation at JOhns Hopkins in mid-December. Should I be trying to get another opinion from Sloan at this point or where is the best place to go? I have a sister in Seattle and could potentially seek out a trial at Fred Hutch. Would be interested to hear anyone’s thoughts on that. Any and all wisdom/advice/encouragement is welcomed. My husband and I have been married just over one year, and he is of course having a difficult time as well. Any words of encouragement for spouses/partners is also welcomed. Thank you for creating and contributing this forum–there’s so little information elsewhere on this awful cancer.
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