September 16, 2018 at 3:28 pm #97509Pfdlsd83Participant
Hello My husband was diagnosed in May 2017 with recurrent cholangiocarcinoma. He was in a clinical trial that used herceptin and perjeta. He has am amplification of a pathway. He began in Nov. 2017. During the trial 2 tumors on the liver remained stable or slightly decreased however the one on the abdominal wall remained stable until a few months ago. By end July it had increased 20%. That excluded him from the trial. He tolerated the side effect fairly well. Fatigue and pain were the biggest side effect and lack of appetite . He is currently in a new trial, phase 1, using a brand new immunotherapy drug. It is a Bispecific DART Protein Binding PD-1 and LAG3. He is being treated at Johns Hopkins.August 17, 2018 at 9:13 am #97380
Thank you for those valuable advice and comfort words. I feel I am not alone and get a lot support from you. I reached out to seek for second opinion. Not many responses but I did hear from Dr Gores, who is widely recommended here by the board. Also Dr Lenz from USC. They agree the approach overall. I also contacted the manufacturer and found out there IS assistant program.Thank you for the clinical trial info, which does provide me the backup plan! Can’t say enough thank you to you guys! I am glad I landed right place!August 15, 2018 at 7:02 pm #97377bglassModerator
I am sorry to hear of your husband’s diagnosis. I had adjuvant gem-cap plus radiation in 2016, so for me this chemo was a good one. The capecitabine occasional side effect (hand-foot syndrome) is widely discussed on this board — the discussions can be found using the website’s search engine.
On the question of Herceptin, it is a reminder of the challenges of a rare cancer. To prove usefulness of a drug for a rare disease you have to find among the tiny population with the illness, an even tinier subset who have a specific mutation, and get them into a study – well, sometimes the studies don’t get done or the sample size looks too small for an insurance company to see it as “evidence.”
Options you may consider pursuing include:
Look at the Herceptin manufacturer’s website and see if you can qualify for a patient assistance program.
Look for a clinical trial. I was looking at the clinical trials.gov website and there are a few for cholangiocarcinoma patients with HER2, or solid tumors with HER2. There is a big group of trials called NCI Match that are testing response by patients with genomic defects for drugs used for other cancers with that same defect. There are several arms for HER2 patients. An advantage of NCI Match is there are participating sites throughout the U.S. Through your oncologist or using the contact info for on clinical trials.gov, you can find out about the trials and if there is a space. If you choose a trial, the treatment cocktail, however, may be different than what your husband’s doctor is recommending.
A third option is to see if your husband’s doctor is willing to do battle with your insurer. If he or she is recommending Herceptin, there is likely at least some medical evidence he or she can point to.
As to possible Herceptin side effects, this is a judgment call you and your husband may have to make with limited information. You may wish to seek a second opinion from a provider familiar with similar cases. There is manufacturer and medical journal info on the web that can tell you how big or small the risk may be. Cancer treatments can be tough and sometimes there are no guarantees – we move forward with faith, hope and crossed fingers and toes.
Please stay in touch and let us know how you and your husband are doing.
Take care, regards, MaryAugust 15, 2018 at 10:17 am #97376
Thank you so much for your timely inputs on my question. I am sorry that you got diagnosed same disease. Herceptin is not covered by insurance as it’s not meant to treat CC. So the treatment cost is skyrocket high. Knowing there is lots of unknowns and risk factors with this add-on, I am not sure if worthy it.August 15, 2018 at 9:35 am #97371MjheintzParticipant
I am sorry to hear about your husband’s diagnosis. I was also recently diagnosed with ICC in April and I’m sure this is all very scary for the both of you.
I know two women, both with triple positive breast cancer, who have had positive experiences on Herceptin. While the process was long and at times exhausting, they both reacted very well to their treatments. I can understand how scary it is to think about the side effects of these drugs, but something I’ve learned through my treatment process is that his oncologist, I’m sure, has weighed the benefits against the potential side effects and is confident that adding Herceptin is an option that may provide your husband with the best chance against fighting ICC.
I am not an oncologist, and I don’t know much about medicine, but I am a patient just like your husband. And as a patient, I always ask questions, and lots of them. So, if you and your husband have reserves about his Herceptin treatments, then by all means do not be afraid to ask any and every question you may have. Raise your concerns to the doctor and make a plan that you and your husband are the most comfortable with.
I hope this helps, even just a little. Good luck to you and your husband, and I wish you both all the best.August 15, 2018 at 8:46 am #97369
I am new to the board (unfortunately). My husband was diagnosed with ICC recently and had surgery to get tumor out. Pathology report indicates poorly differentiated with node-positive. He is in GemCap chemotherapy as adjuvant treatment and tolerates well. His oncologist found HER2 amplification in the lymph node’s FISH report recently, which is common seen in breast cancer. And recommended adding Herceptin (target Her2 in breast and stomach cancer) to the adjuvant treatment. But this is not scientifically proven effectively. One severe side effect of Herceptin is heart failure. So I am hesitating now whether or not to take this approach this time. Have anyone here had/heard similar scenario or any experience to share?
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