Hello from Miami
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pinklady….I feel for you. Unlike other major cancers, treatment options for our cancer are limited and require an enormous amount of work. Add to it the private pay issue then clearly you must be overwhelmed. We hope to help you as much as possible. Unfortunately though, we can’t provide a procedure cost listing.
I looked at Moffitt’s clinical trial listing and it’s overwhelming as well.
https://moffitt.org/clinicaltrialsearchresults/?search=Any%20SiteAdditionally, I contacted a physician at Moffitt. He said that Y-90 can be used off-label, but they are not running a Y-90 trial for our patients. I looked it up, it is for colon cancer. However; there are other CCA trials First Line and Second Line offered in their institution.
I sent an e-mail to the address provided by you.
Hope you get some rest, tomorrow is another day.
Hugs,
MarionHi Marion.
Admittedly, I didn’t do a lot of homework in finding more specialists. Our hepatologist put in the referral for the heme-onc who happens to specialize in hepatocellular and cholangiocarcinoma. He is a professor and very involved in research (Dr. Feun) and my Dad was comfortable with him.
I should’ve asked him how many cases he sees per year and other questions of the sort, but in all honesty we have all been exhausted and sometimes things fall through the cracks. He did mention that he had a recent patient of his who had one course of chemoembolization for BTC and has had a remarkable reduction in primary tumor size.
We’re still trying to figure out the way we’d be able to afford any of the treatments. That’s been a huge component of sorting out the options. He’s self-pay and despite a discount, everything has been extremely expensive. Right now, we’ve been able to pay the things they’ve asked, but we’re afraid that we’ll soon hit a wall financially. Their financial office is putting together the cost of the options so that we can make a decision. is there a list here of procedure costs when paid out of pocket?
I am tired and overwhelmed and we’re just getting started…
Hi Middlesister!
Thank you for your welcome. His tumor is metastatic. He’s got multiple lymph nodes affected. Whatever we end up choosing, it seems we’d still have to try a systemic approach.
My main issue is which combination would be best?
Thanks to Marion, I now see that there are YouTube videos that I can watch and educate myself about what the current options are.
Y90 seems promising and I know that Moffit is doing trials with it (at least that’s what I was told), so I am keeping it on the table.
You and Marion are both right in that we need to have a team. We have an Infectious Disease specialist (we found Hep B in this process) and we have the oncologist, a hepatologist and the availability of a surgical consult (consensus says inoperable at this point) to revisit the option for excision if we get the primary tumor to reduce its size. Honestly, radiation is only a far-off thought because both his Japanese team and the Miami oncologist seem to think that it’s not first-line for him.
Right now, we’re doing everything we can in Miami. He wants to be close to his family and I agree.
I am glad your mom did well. Stories like that give me hope that my dad will be able to reach milestones like that.
pinklady….Histopahtology and Immunohistochemical analyses are of great value. Perhaps it will reveal the PD-1 alteration found in 40% of intrahepatic patients. Some had fantastic responses to pembrolizumab and we have seen similar results with nivolumab (same drugs.)
I understand that you want to keep your father close to you and perhaps that is how it will turn out to be; however I still would consider a professional opinion from a large center treating a high volume of CCA patients such as MD Anderson, Mayo, Sloan Kettering, John Hopkins. The West Coast has other centers. When confronted with a rare cancer, you would want to consult with a physician familiar with hundreds of cases and those physicians are found in large centers only.
“Choose a doctor who has experience treating your type of cancer. Studies show that doctors have better success treating a condition if they have a lot of experience with it, so this is an important factor.”
http://www.cancer.org/treatment/findingandpayingfortreatment/choosingyourtreatmentteam/choosing-a-doctor-and-a-hospitalHaving said that, dear pinklady, often times a consultation is all you need, it may confirm the options while treatments can be done close by. Additionally, often times physicians from larger centers consult with the locally treating physicians.
I looked up the phase I trial: https://clinicaltrials.gov/ct2/show/NCT01695005. Ultimately you may end up with this study, but by taking the additional steps of outside consulting, you are assured that you are making an educated decision.
Hugs,
MarionPinklady,
Welcome to our group. You mentioned that he was offered Y-90. Although not all have the results my mother did, she also had the unresectable ICC and after 2 Y90 treatments has been in remission (no evidence of disease) since Nov 2014. Although not cured, the treatment-free years of life is something we didn’t think she would have.
Marion is so right on needing the team and multiple opinions/eyes looking at the case.
Best wishes,
CatherineHello Marion!
He was diagnosed in Japan and evaluated by their tumor board. All specialties were on deck for his case there. Unresectable as per surgery. 5-FU has been his treatment until he secured a second opinion Stateside. He has completed 2 cycles and has done well (no new scans, though), but CA 19-9 has risen.
Second opinion here at Sylvester-UMH (Tumor board agrees with Japanese findings). As you mentioned Gem/Cis chemoembolization was one of the recommendations. We requested that they look into immunotherapy options, if available (to get the ball rolling). I know that they will start a trial for solid metastatic unresectable tumors using a new agent called LY3039478, but we don’t know if he’d qualify for it. I sought this center because they’re doing research and it’s close to home.
Histopathology was done in Japan and I’ve never seen the results, but I know that all immunohistochemical analyses were likely performed. UMH requested the results and slides be sent to them for evaluation.
We tried to get a third opinion from a surgical oncologist who was recommended by a colleague and when I described the first few things he said “nothing I can do” and shut me out.
That’s the point where we are now. Sort of in limbo. We have done some, but we have yet to feel like we’re on some kind of road. I came here to see if there were good, uplifting stories and found some. I am grateful for the site and hope that we can all find a way to health.
You may find comprehensive overview with Dr. Valle’s presentation, 2015 ESMO
https://www.youtube.com/watch?v=JSl-483wjNQthese additional links may be of help to you as well:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=105038#p105038
pinklady…..welcome to our special group. A second, professional opinion has become standard, hence I would consider sending his medical records to a center treating a high volume of cholangiocarcinoma patients.
This cancer should be evaluated by a multidisciplinary team consisting of:
pathologist,
surgical oncologist,
oncologist,
radiation oncologist,
gastrointerologistI assume that your father had a biopsy and tissue has been analyzed for molecular alterations. Based on the biomarkers, the next treatment option may evolve.
Most likely already you know that Gemcitabin and Cisplatin are first line of treatment.Thanks for offering your help. We graciously accept and appreciate your kind offer.
Hugs,
MarionWanted to introduce myself.
My father was recently (June/2016) diagnosed with intrahepatic cholangiocarcinoma with mets to lymph nodes (no mets to rest of the GI tract or other organs).
I found my way here to try to make sense of possible therapy options. I am grateful for the insight and support I have seen on these threads and wanted to make myself available as we navigate this difficult journey.
I am a doctor, but I do not practice clinical medicine. My dad is a foreigner and got diagnosed abroad, but is currently under the care of an oncologist here in Miami. We don’t have any molecular studies on hand (I have not seen them) and my gut says that he should try to get on some sort of immunotherapy trial. He has also been offered chemoembolization and Y90 as possible treatment options. We have not made any decisions yet and we’re still trying to figure out how to afford the treatments.
I hope to be able to help others here as I have been helped by reading your posts.
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