First time posting
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First time posting. I found out I have this cancer quit by accident. I was diagnosed with diabetes in October of 2016. I began having pain in my back at the same time.
In February I went to my GI doctor, I have Gerd as well. I was having increases heartburn. He recommended a CT scan of my pancreas just to make sure nothing was missed. That test showed some growths in my liver. I then went for an ultrasound which confirmed a tumor.
Initially, they thought it could be a melanoma as I have a prior history of that.
It took awhile to get biopsy due to the location of the tumor. It’s lying under my diaphragm so every time I breath, my diaphragm covers it.
The first biopsy didn’t work due to the location. Doctor was afraid he may puncture my lung. I then found an oncologist with the help of my daughter. He sent me to an interventional radiology at University Hospital in Cleveland, OH. That doctor was able to get the biopsy. Soon after, the oncologist called me. He said it was not a melanoma at all but cholangealcarcinoma. He sent me to a surgeon who is the head of the liver transplant team at UH.
I will be having surgery tomorrow morning. Doctor recommended an ablation. Luckily, the tumor is small, 2.7cm. I was lucky to have found too have found this at an early stage. It in iterhepatic in a bile duct in the 8th quadrant of my liver. My doctor says this is the best treatment for me since the tumor is still small.
So, I start my journey with the cancer. I’m positive and hopeful. I feel I have a good surgeon and a good oncologist. Wish me luck!It’s been some time since I’ve posted an update. Today my husband completed round 4 of the Folfox/5-FU regimen. This has been a rough regimen. Lots of nausea and each round leaves him weaker and less able to bounce back. He’s lost a lot of weight, no food tastes good, not hungry, sleeps a lot. Our oncologist wanted to complete 6 rounds and then have a scan, but decided to have a scan on June 26, to see if this chemo is helping or not. If we find that this regimen isn’t helping then it will count as a fail and that makes 2 failed chemo attempts which qualifies us for clinical trials, if there’s one available. My husbands abdomen seems to be swelling more, he might have to have it drained if it gets to be much worse. I want to get a second opinion about our treatment. Husband is not so willing to go that route……it takes time, energy, and action that he just isn’t up to right now. We are hoping for a good scan so they may be able to do the Y90if the tumor had shrunk enough. I always questioned the team of doctors decision to skip the Y90 and go straight to chemo when they found out that the tumor had metastasized to lungs and lymph nodes. They said the Y90 only treats the tumor but the chemo treats the everything. However, after 3 months of gem/cis they found that the bile duct tumor actually grew as well as the other tumors, I would have thought that they would have attacked the monster tumor in the liver with the Y90, and then go back to chemo for the rest of the tumors. Getting a little frantic knowing we are on borrowed time, and I see the wasting away of a once healthy , hard working man. It’s hard to watch…..thanks for letting me rant.
HopefulLou,
Your wife’s situation is almost identical to my husbands. He was put on the same chemo regimen (oxaliplatin, 5fu, and home pump for 47 hours) , after the gemzar and cisplatin failed. His tumors also grew during that time. He started this new regimen on Tuesday, May 2nd. Chemo pump was disconnected on Thursday. We weren’t told the exact trial that the oncologist was thinking of. My husbands tissue was not tested yet for clinical trials. I can see that we need to be more assertive in our questions and demand answers and action. We’re finding out that we need to be our own advocates, and this site has been so helpful. Thank you for sharing your wife’s story. I hope the response to this new chemo regimen will be successful for her and my husband. We’ll remain hopeful and positive! Please keep us posted. I’ll be mentioning the clinical trial again to our oncologist. Thank you!
Hopeful,
My wife is in a similar position as your husband. The Cisplatin/Gemzar first line treatment did not work and her tumors grew while she was on the treatment. The doctor has started her on the FOLFOX, which is the oxaliplatin and 5FU regimen with the 46-hour pump that you take home. She had her first treatment of the FOLFOX a couple days ago and was unhooked from the pump today.
She had her tumor tested and was found to have the IDH1 mutation, so she qualifies for a trial of a new drug, AG-120, which is being tested on people who have failed to maintain a response on the Cis/Gem chemo. She wasn’t required to get the second chemo regimen before the clinical trial, but was told that she could not start a third chemo regimen before starting the trial. She’s going to try the FOLFOX and if/when that stops working she will enroll in the clinical trial.
Do you know what clinical trial your doctor is recommending to your husband? I’d like to see if it is something different than what they are recommending to my wife. The trial of AG-120 that I mentioned above is titled “Study of AG-120 in Previously Treated Advanced Cholangiocarcinoma With IDH1 Mutations (ClarIDHy) (ClarIDHy)” and the number is NCT02989857.
Good luck. Sending positive thoughts your way.
Hopeful…given your location, Mayo Clinic, Minnesota is the closest to you.
Is it posible for your current oncologist to give you a referral?
Biliary Oncology Department
200 First St. SW
Rochester, MN 55905General number 507-284-2511
Appointment Office 507-538-3270There also are two clinical trials, you may want to look into:
NCI – MATCH: https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match. This will require a fresh tumor sample
and the ASCO TAPUR study: https://www.cancer.gov/about-cancer/treatment/clinical-trials/nci-supported/nci-match Fresh tumor sample not required
I hope this helped. Hopefully your oncologist is open to discussing other opinions with you.
Hugs
MarionMarion….where are there places near us that specialize in cholangiocarcinoma? I don’t think our insurance covers out of network. And yes, it’s sad when one has to have two fails in order to have more options. Does not make sense.
hopeful…please consider a professional opinion from a center treating a high volume of cholangiocarcinoma patients. You want to make sure that prior treatments won’t exclude your husband from other various clinical trials. I think this is urgent. Gladly we will guide you along.
Does your husband have insurance for out of network?
Hugs
MarionThat’s what is disappointing to me when the oncologist gives once treatment option even though you feel it may not be the best for the individual and want to try clinical trials and they don’t unless you try chemo treatment and if it fails another one. There should be some cooperation or choice in the matter. I want this to change where they bring a few choices to the table and offer a trial from the beginning where perhaps a patient wants to take a change on an alternative to chemo.
I don’t know of any study name or ID number, or if his tissue sample has been analyzed for molecular alterations. We’ve just I started talking about this with the oncologist and reps for the clinical trials. These are questions that we can ask about. Thank you!
hopeful……Do you have the study name or ID number? Also, has the tumor tissue been analyzed for molecular alterations?
Hugs
MarionWe were told that in order to qualify for clinical trials we would have to have two failed treatment plans. We have one, and he strarted his new chemo regimen on Tuesday. They want to do 6 treatments. Treating every other week which brings us to beginning July. They will then do another scan to see if there was progress or failure. There’s so much waiting time! We haven’t sought out a second opinion because it’s not just one doctor involved, but a team of doctors at St. Lukes in Milwaukee. We go in tomorrow to get him unhooked from the chemo pump. This chemo treatment plan seems to really put him down. He sleeps most of the time.
Thank you for any input you can give. It’s much appreciated!I might add that yes, they do have tumor tissue to submit for trials. And I would say that he does fit into categories 1 and 2 for performance status. He’s 64 years old and was the most hard working and energetic man before this ugly cancer took that away. He has slowed way down but on nonchemo weeks he does better.
We were told that in order to qualify for clinical trials we would have to have two failed treatment plans. We have one, and he strarted his new chemo regimen on Tuesday. They want to do 6 treatments. Treating every other week which brings us to beginning July. They will then do another scan to see if there was progress or failure. There’s so much waiting time! We haven’t sought out a second opinion because it’s not just one doctor involved, but a team of doctors at St. Lukes in Milwaukee. We go in tomorrow to get him unhooked from the chemo pump. This chemo treatment plan seems to really put him down. He sleeps most of the time.
Thank you for any input you can give. It’s much appreciated!hopeful……they should know real soon whether the currently applied chemotherapy works.
I assume tumor tissue had been analyzed for molecular alterations, correct? The big issue for clinical trials is performance status I or 2, which means the patient has to fit in the first two categories:0 Fully active, able to carry on all pre-disease performance without restriction
1 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work
2 Ambulatory and capable of all selfcare but unable to carry out any work activities; up and about more than 50% of waking hours
3 Capable of only limited selfcare; confined to bed or chair more than 50% of waking hours
4 Completely disabled; cannot carry on any selfcare; totally confined to bed or chairI would consider looking at a clinical trial at this time. No reason to wait.
Hugs
Marion
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