New member — Wife recently diagnosed with ICC
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welcome Jason
i don’t have much to add–my husband has stage 4 CC (spread to lungs
and lymphs as well) so he is not ever a candidate for surgery.(He’s 44, we have 4 kids age 19 to 9)
But I did want to say after one FULL round (9 weeks) he has had
GREAT “shrinkage” of his tumors (gem/cis).We are continuing onward…we’ve met another CC “survivor” via
Facebook who is the same stage and cancer spread as my husband
(So again no surgery options available).He’s on month 20 and has had a FABULOUS response to chemo.
Just know there’s always hope!
best wishes…Dorien (kyle is my husband)
Hi,
The link below may help.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=47365#p47365
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7791
If I were you, I will get the CT Scan with the contrast done, then send the disc an lab to Dr. Kato for surgical consult First, dr, Shelby in USC will be ok too, but I still suggest Dr. Kato. first. And see what you can get from him. I will get it done ASAP. It will take time to schedule your Ct with contrast,it take a couple day to allow radiologist to read and dictate the report. And it will take time to gather all the info of your old Pet!lab from medical record dept. by the all thing are on dr Kato desk, 2 weeks -3 weeks may be bedded.
Therefore ,if I were you , I will plan it right away .and FIRST for DR. KATOWICE.
HAVE TO GO NOW,SORRY.God bless.
Wow. Thank you all for the kind words and encouragement. It has extra meaning coming from people that know first hand what we are going through.
Andrea and I have kind of taken a divide and conquer approach. She is focused on the therapy in front of her, and my job is research. The hope is that I can be knowledgeable about treatment options and tradeoffs so we can move quickly as things develop.
One of my worst fears is making a bad call on what to do. The only way I have found to push back this fear is to do everything I can to learn about this disease and treatment options. I may still choose the wrong approach, but at least I will have done my best.
What is pretty amazing (and just shows the power of this group) is that in the course of 24 hours, so many new options have popped up on this thread!
Sam — Football size and shrunk in half in two cycles? That is amazing. I hope things continue to go well with your wife. Fingers crossed that Andrea has a similar positive response.
Audrey — Thank you for bringing up dr. Kato. He seems like someone I definitely need to try and get to review Andrea’s information.
PCL1029 — Interesting. We only got a “lower abdumen” CT scan, but that was before the cancer diagnosis. I am not sure if it was “with contrast” or not. I should go back and check. Any thoughts on what extra information this type of scan might show? If I understood that better, it would help advocating for that scan with the oncologist.
The current plan is to get a scan after 1 or 2 more gem/cis cycles. It seems like that is a good time to reach out to Dr. Kato for another opinion (as well as circulate the scans with the docs I have seen already to see if their opinion has changed). Any thoughts on this plan? Should I push for a scan ASAP?
Holly! you got a resection even without getting all the cancer?? That may be a good option for Andrea. Lots of things are not possible given the extent of the cancer. Cutting most of it out and dealing with the rest seems like a sensible idea, but no one I talked to seemed to think that was a possibility. Thank you for commenting! It seems high risk but also high reward. My head is spinning.
Was the plan all along to do y-90 after the resection, and was there a reason that was thought to be a good plan?
Lisa — Your situation seems very similar to Andrea’s. It sounds like you are doing well with your treatments. I do hope so. Hearing success stories is very encouraging. Thank you also for the kind offer to talk.
Wow…24 hours…Great info and great people.
Thanks everyone,
Jason
Jason, I am a 48 year old mother of two boys and wife to David. I was diagnosed with ICC in 2010. I have had two liver resections, many different chemos and steriotactic radiation. I know others have mentioned Tiffany and she has ICC and is awaiting a liver transplant, she works with Dr. Javle at MD Anderson. I have read several stories on this site where tumors have shrunk and surgery became available. If you would like to talk to someone please feel free to call me at 330-903-6868.
Lisa CraineGreetings to you and so sorry you had to find us but, wow, this is the place to be! My case is almost exactly like your wife’s only I’m 55 with a 15 year old daughter. One main tumor, many small tumors. I did four rounds of gem/cis and had surgery to remove the big tumor and the whole left lobe, knowing that the surgery could not be curative because the right lobe had small tumors too. My surgeon was Dr. Kato. The key is that the cancer may have spread through the liver, but had not spread anywhere else or to any lymph nodes. After surgery I had y-90 and have not yet gone back to chemo, which will be next. Keep us posted on your wife, and ask any questions. Best to you all. ~Holly
Hi,
PET/CT scan may not be the best scan information for the surgeons to render their decision. Therefore if you are on PPO insurance that you can ask your oncologist or even you GP to order a CT scan of the chest, abdomen and pelvis WITH contrast for your wife , and then like Audrey said, send the CT scan DISC and report along with the labs to Dr. Kato to take a note . It won’t hurt but you may gain more if he will explain to you why not or he may just take your wife in for surgery.
BTW, Stanford is famous in their interventional radiation department, but then again, you have to weight the benefit against the adverse reaction of the radioembo. procedure; read more about the procedure, get a second opinion from Dr.Kato first, then to decide to continue the chemotherapy of GEM/CIS for a period of time, and allow enough time to let the body to recover from the chemotherapy before starting radioembo . That will be my suggestion if I were in your situation, and please remember I am ,like your wife is a patient, and nothing else.
God bless.Jason,
So sorry you’ve had to join this family off patients/caregivers dealing with CC. (my husband was dx april 9 2012 and had a resection, and is doing well at the moment, but i’m always aware of the possibility that the CC could return, especially since it metastasized to a distant lymph node and there is/was perineural invasion.)
Anyway–even though you live on the west coast, you may want to run your situation by Dr. Tomoaki Kato ((212) 305-5101) since he performs surgeries that no others would dare. Another great doc, at Sloan, is Dr. Fong. Of the two, I’d say that Kato is more “outside the box” and you may just want to see what he has to say about your wife’s case.
Glad we can all be here for you,
Audrey (aka betzeegirl)
Jason…..I too would like to welcome you. Your extensive research on treatment options is quite remarkable. Please now that it sets an example to many others presently and in the time to come. As you have noted, liver transplantation historically have been conducted on extrahepatic disease however; there are some institutions considering intrahepatic cholangiocarcinoma. I don’t know anything about it other than that our Tiffany is on the transplant list and in fact, as we speak is awaiting a donor liver.
Personally, I prefer to compare this to a chronic disease. Research has increased, numerous clinical trials are underway and several are in the concept stage. So, we try to stay positive and continue to be vigilant about anything coming our way. Although, this disease affects thousands of people globally, it is the individual that sets his/her own responses to treatment.
Hugs,
MarionDear Jason, welcome to our extraordinary family but sorry you had to join us. Andrea certainly has a wonderful advocate in you! She is at one of the best Hospitals and you have researched a lot of the best Hospitals for different treatments. This CC is the sneakiest Cancer, almost like it has a mind of it’s own. We do have quite a few Members who have gone on to surgery after having their Chemo treatments. There IS HOPE! Ask all the questions you want, we are not ONCs but we sure have experience and will do our best to help. You have already done a ton of research and knowledge is our most power toll in fighting this CC. Along with that attitude is a biggie and most of all BE STRONG! We look forward to hearing more about Andrea and please keep us posted as we truly care. I know you are going to be hearing from a lot of our Genuis and caring Family.
JScott,
My name is Sam and was raised in Los Altos. Sorry to hear about your wife and will keep her in my prayers. My wife also has CC since February 14th. She has been on Gem/cisplatin on the two weeks on and one week off since then. (She just missed one series because her white counts were too low. The Cisplatin is tough on her tumor but hard on her too.) Her tumor was Football size and has shrunk to half that size. Another person we have met during this journey, Kevin, just had a resection of his tumor that started out grapefruit size and shrunk with the Cis/Gem regiment. He started on 11/11/11. Both were told that the tumor was too big to operate on but his shrunk small enough to have surgery and that is what I am hoping for my wife. It seems like shrinkage is the best word you will find on this site and hopefully your wife’s tumors will shrink to the point that she is a resection candidate. You are both in for a rocky road but there is hope and keep on keepin on!Hello everyone,
My name is Jason, and my wife Andrea was diagnosed with intrahepatic CC on April 1. It is amazing how much our lives have changed. I think we are both still in shock and somewhat in denial…
Andrea is 45, very healthy and has no symptoms at all. That is the good news. The bad news is that she had a routine blood test back in November 2012, that turned up some slightly elevated liver test numbers. After a number of tests and retests, we finally had a CT scan that showed a liver lesion and then a biopsy that indicated upper GI adenocarcinoma. That was the news that arrived April 1.
Since then, we have had a PET scan that indicated it was very advanced in the liver (multiple tumors with the largest 8.5 cm), but had not spread beyond the liver. Andrea is getting treatment at Stanford, and she has started on gem/cis (2 weeks on / one week off), and has now completed the chemo for two cycles.
I have tried to research as many options as possible, but Andrea is not a good candidate for most. Here is what I have pursued so far:
Resection — not a candidate given the central location of the tumor and the involvement of both lobes.
Proton beam therapy — This looked promising, and I contacted Dr. Ferrone at Mass General, but Andrea is not a good candidate because the number and aggregate size of tumors is too large.
Transplant Mayo — Mayo clinic has a transplant protocol, but after talking to the
researchers there, I understand their protocol is only for hilar CC. (Dr. Heimbach was very kind with her time here btw)Transplant UCLA — Actually, UCLA is one of the few places that will consider transplants for ICC. Again, the extent and the potential involvement of a vein meant she was not a candidate at this time.
Radioembolization — We finally hit a procedure that seems to help people with Andrea’s cancer profile. Both the fact that she is healthy without symptoms and that her tumors are more peripheral instead of infiltrative seem to be characteristics associated with good outcomes.
Our current plan is to see how chemo is working and then probably do the radiation at some point. I understand that surgical removal is the only current cure, so I just hope somehow some of the therapy can facilitate surgery…
We have two wonderful boys (age 14 and 12), who would be devastated to lose their mom. Too terrible to even think about that.
Anyway, I am very thankful to have found this site. After spending a few days here, I can tell there are many knowledgeable and caring people. I have a number of questions, and hopefully I can benefit from your experience. This disease sometimes seems so very dark, it is hard to even get your mind around it.
Jason
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