kgroft
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Good evening,
My husband just finished his first 2 weeks of treatment on the trial. So far, his phosphorous is elevated and his lips look like they are sunburned: cracked and chapped and he says they burn. Otherwise, he’s doing well. I’m hopeful that side-effects=treatment working. Side effects are much milder than chemo.
Good luck to Rich and hope he receives some relief of side effects.
Have a good weekend all.
Hi, Sandy,
I printed the questions from these sites and asked them at the initial meeting with the nurse:
http://www.clinicaltrials.com/study_participants/questions_to_ask.htm
https://www.cancer.gov/about-cancer/treatment/clinical-trials/questions
I also inquired about who pays for care for any side-effects resulting from the trial meds.
Good luck!
Good luck, Arapro! My husband starts this Fri., 9.8. I hope we find that it truly is a miracle treatment!
Hi, Catherine,
We’ve been happy with my husband’s care at JHU. To be honest, after hubby’s diagnosis, we were referred to Hopkins by a local oncologist ( it’s only about 1 hour away). We were VERY pleased with the surgeon, Dr. Jin He. Hubby’s current oncologist, Dr. Zheng, seems to be an expert (you can watch his talk at the CCF conference from 2015), but his bedside manner is a little lacking. I go in with many questions ( I do my homework as I feel it my job to know all I can to help hubby), but he’s not always helpful answering them. It feels like he expects us to follow his recommendations without question; he’s not dictatorial, just whenever I ask a question, he redirects us to his recommendations. I don’t feel we’re part of a team the way I’ve heard others on here describe. All of that being said,, as soon as my husband’s cancer recurred, he immediately had the genetic testing done and recommended a clinical trial. He is kind and soft-spoken. The clinical trial team has so far impressed us with more of a team feeling (the trial is at Hopkins); I ask many questions which are always fully answered.
We’ve come to view Hopkins as the experts and our local oncologist (works with Hopkins) is the one who provides explanations and discusses options with us.
This is all my perspective. I asked hubby how he feels about his treatment at Hopkins: “It’s been great! I like Dr. Zheng.” When I asked how he feels about the surgeon, Dr. He, “You know how I feel about him. He’s terrific!”
I’m not sure how helpful my response has been. So far, we’re good with things. If things don’t work with this trial, we’ll look around at other locations, like NIH (also easy driving distance) and then more distant options.
Please let me know what you end up choosing to do as it may be very helpful to us in future.
We have progressed through the VA process for the Camp LeJeune water contamination. My husband was given a 100% rating due to this cancer. Liver cancer is one of the 8 presumptive conditions that are linked to the contaminated water and the cholangiocarcinoma is considered liver cancer by the VA. All medical care will be covered by the VA, though he does not have to have care at a VA hospital since they don’t have experts in cholangiocarcinoma. They will pay for his treatment at a medical center with experts (so we’re expecting they’ll pay Johns Hopkins). Considering how rare cholangiocarcinoma is, I’m not sure how many other Marine vets are affected by this, but I thought I’d let others know in case. This will be a BIG help to use financially as we continue this path of healing.
I’ve not had a chance to scan in and post the official VA materials, but I’ll try to do that soon.
Thank you
The nurse phoned Thursday AM to report that my husband, Brian, can start the study. He’ll begin Sept.8. I’m sooooo hopeful! The good stories here really give us both a positive feeling!
My husband just completed tests at Hopkins on Monday, 8.14 to determine his eligibility for this study. The nurse and doc said it looks very positive for my husband; in fact, he was given a patient number that day. He currently has 15+ lesions in the remaining portion of his liver (he had resection in Nov. 2015 followed by gem/cis, then radiation; recurrence in May 2017.). Your posts really give me hope for this study. I asked about immunotherapy trials, but the doctor explained that if this trial doesn’t work, he can try an immunotherapy trial, but once he’s tried an immunotherapy trial, he won’t be able to enter other trials. Has anyone else heard this?
Thank you!
Thank you both for the helpful information. This will help hubby and I both understand. I greatly appreciate it.
Thank you for the welcome. My husband is still under the care of Dr. Zheng at Hopkins. Fortunately, we live an easy distance to this fantastic facility. We are considering pursuing a second opinion at MD Anderson as well.
When I hear from the VA, I’ll update everyone here. I will also look up hub’s paperwork from the VA regarding this issue. Apparently, chemicals leached into the water and it continued for over 20 years.
Thank you
