Topic: New member

I wanted to introduce myself. My husband was diagnosed with cc this past Fall. Because of a previous unrelated cancer tumor he was having CT scans and in June a spot on his liver was found. He had an ablasion done (thinking it was related to the previous tumor which to everyone's surprise they diagnosed as a primary liver) and the surgeon suggested waiting a month to see if we see anything more on the next scan. He did see a ring around the spot that was ablased so he went in to do a biopsy. That was in November when we received the worst news you could hear- stage 4 cc. Not a candidate for surgery and needed to start chemo immediately. We started with gem and oxyilplatin-3 treatments and the CT scan showed he did not respond so we just finished 2nd round of xeloda but do not know the results yet. We have gone for a 2nd and 3rd opinion but there seems to be very little to offer if he does not respond to the xeloda. My husband does not want anyone to know he has cancer for business and personal reasons so I am struggling to get through each day. He has no symptoms and has tolerated the chemo pretty well, just tired and cold all the time. This would not have been found until he had symptoms if he didnt have a problem with the tumor on his arm. So my biggest fear right now is when will he have symptoms and the unknown scares me the most. Will he go on like this for months, years? I am not getting any answers from the drs. The only thing I keep hearing is it has spread and the cancer markers are very high. I guess I need help emotionally and more information about this disease. I AM SO SCARED AND LONELY. We have told immediate family and very very close friends but that is it so I go around like nothings wrong.
Has anyone had any success with these clinical trials and does anyone know of any going on for interheptic cc. Thank you for this websites support. I have read others stories over the last few months but since my husband is so private was afraid to come on to introduce myself but Im at a point that I need support.

Re: New member

Dearest Susan,  my opinion has not changed, this is so unfair to you as Caretaker! You really, all of you, need to come out so to speak and be a united team! You will never get through this down the road by hiding, and you need support from those around you. This is nothing to be ashamed of....we have the bravest, most courageous, loving people in the world right here. Of course you are scared and lonely as CC is a monster and you are not being allowed to exercise your natural feelings and instincts. Have you sought out a 2nd or 3rd opinion, this is so important.
There are tools that can be used but it seems your hands are being tied. Only a suggestion but I would have a "family" sit down and let them ALL know, including hubby how you are feeling about this. This is not the time to be a "shrinking violet", if you don't stand up now not only will you not be able to but Hubby will not get the proper care.
I apologize if I offend anyone but Caretaking is so hard as it is without fighting the world as well.
If the Docs are not communicating that alone is reason to go elsewhere.  We never know what symptoms will come up or when. I strongly suggest you read up as much as you can as knowledge is our biggest tool to fight with. I am so very sorry to say this whole scenario just sounds so wrong to me, I sincerely hope it all gets straightened out. Please contact me if you wish, I truly care and you are really not alone now, you are here..

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

3 (edited by PCL1029 Tue, 26 Feb 2013 15:58:48)

Re: New member

Hi,
I will recommend Mass General Hospital for a overall 2nd opinion on intrahepatic cholangiocarcinoma(ICCA). They use a team approach and is forefront in CCA treatment and research.They will provide info for your husband on surgery,medical oncology,interventional radiation and biomarker collection.
do this as soon as possible so you and your husband know exactly what your husband current disease state and move from that point on.
I am a patient of ICCA for 45 months; Cancer is now more or less like a chronic diesase like diabetes or high blood pressure. Cancer is no longer a disease of unknown anymore. and it seems your husband discovers his ICCA quite early so, get a 2nd opinion from MGH first and then goes from that point on. In the meantime  ,educate youself by reading message from this board.
1. about systemic chemotherapy and targeted therapy in treating CCA.

http://www.cholangiocarcinoma.org/punbb … 198#p57198

2. about clinical trials for this disease.

http://www.cholangiocarcinoma.org/punbb … 706#p70706
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member

We were at Mass General for our 2nd opinion last week and Sloan. Both agreed that we are doing exactly what they would have done if we went to them first. Mass General may have a clinical trial coming up but certainly we cannot start anything until we see how he is doing on Xeloda. But we are in their system and will be called for the upcoming trial. Have you heard of anyone that used Cell path? That was one of the recommendations at Sloan and a possible clinical trial. Trust me, I have not stopped researching this disease but in every situation there were symptoms on the onset. That is what is so confusing, just waiting for the "shoe to drop". I am working on my husband to talk to friends about this but he has to go through his own process and he is the one with this horrible disease. Thank you.

Re: New member

Hi Susan.  I'm very sorry you and your husband are having to deal with this.  My husband had lung cancer a number of years ago and his cholangiocarcinoma was found during his annual CT scan in October 2011.  He had surgery but the cancer returned in September and he is now on FOLFIRINOX.  My husband also has intrahepatic CC and has never had any symptoms.  It is my understanding that the jaundice and other problems so many patients describe are less common in intrahepatic CC.  Although my husband has some side effects from the chemo, he still doesn't have any pain or other problems relating to the cancer itself.  He is self-employed and was originally hesitant to tell his clients about his illness.  Once he did, however, their support has been over-whelming and he is still working full-time.  Your husband will work out what is best for him.  It sounds like you are doing all the right things by getting additional opinions, investigating clinical trials and doing research.  I have found a lot of support on this board and I know you will too.  Take care.

6 (edited by PCL1029 Tue, 26 Feb 2013 18:05:54)

Re: New member

Hi,

"I have not stopped researching this disease but in every situation there were symptoms on the onset..
For intrahepatic cholangiocarcinoma, there are no symptoms even in the final stages of the game. The reason, the liver a  very large organ, and if the tumors do not block the bile flow, your will not see any symptoms until the bile ducts are blocked or the liver no longer can function under the  minimal capacity because of the tumor load is too heavy .
BTW, since I have this disease, I did not hide my situation when asked ; I told my classmates and my coworkers; I join this message board and contribute my share of what I think is my responsibility to find the cure of this disease. Actually I am more active than I had my disease before.
One thing I am sure, I did help a few of my classmates and coworkers who develop  cancer later , in understanding  that the " positive attitude "that I demonstrated at work and thru communications give them courage to fight against their own battle of  cancer.and I thank God for using me to help others thinks differently  and positively about treating the disease called cancer.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New member

Dear Susan,
I am so sorry to hear about you and your husband. Glad you have gotten those 2nd and third opinions, but so sad you are obviously in anguish. It can take a little while for things to sink in. Maybe husband will be ready to reach out soon. You should not be alone in this, should not have to bear this grief so privately. BTW I have ICC and zero symptoms. In fact, that is the most common way of presenting. I only felt vaguely "unwell" maybe a little tired or nauseated and had a coupe of migraines close together. Otherwise I never would have even gone to the doctor. Please let us know how it goes. Even if you have to keep a stiff upper lip at home you can come here to cry and rage and find company. That's why we are here. Holly

8 (edited by jathy1125 Tue, 26 Feb 2013 19:42:49)

Re: New member

Dear Susan, I am sorry you had to find us and travel down this road. I agree with Lainy, it is time for an "intervention" some one needs to help you explain to your husband how much you need a great support system and how much people want to be here for him and his family. My husband comes from a very private midwest family and while I was battling CC it was very hard for him to let people help us, the moment that changed for him was when I was in a coma, he was so surrounded by so many people who loved him, his wife and child that  they were never alone, he realized they need him as much as he needed there love and prayers.
Lots of prayers -Cathy

Re: New member

Susan, I too would like to share that your husbands need for privacy is common. My sister also has ICC with no jaundice or other symptoms but only some intermittent pain in upper rt abdomen at night for 3 nights that caused her to go to Dr. She also is very clear that for professional reasons, she does not want it public that she has cancer and is very guarded about sharing details even with the extended family. That's one reason I've come here for support, to learn, to discuss and share worries. Please know you are not alone and that so many here can help ease your fears.
Sincerely , Willow

Willow

Re: New member

Susan....I don't have much to add to what the others already said only that in re: to the question of cell path. I believe that the physicians referred to Personalized Medicine and the future of cancer treatment in difference as to how we know it today. 
Rather than the one-size-fits all approach such as attacking a tumor pathway, researchers are focusing on the genetic complexity of human cancers, the genetic make-up of each individual and the changes that occur within their own cell lines.
http://www.sanger.ac.uk/about/press/2012/120328.html

I am so glad that you have found us and agree with the others; this disease warrants support and understanding from those in similar circumstances.  You have come to the right place. 

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

Thank you all for your support and information. It already has been comforting. I just don't understand how this disease shows no signs and then you get extremely sick??? How does this happen? (I understand the liver function) Our doctor has said she will be able to see the progression with blood and CT scans but this is still my biggest fear. BTW my husband is being treated at NYU Langone and so far (other than our oncologists lack of communication) has been very well medically cared for. I do agree with PCL that Mass General Dr Zhu was very knowledgeable in this cancer. Linda- it sounds like we are at a similar place. The drug your husband is on is in the same family as 5-FU drug as Xeloda (Which is the drug my husband is on). We were also recommended to see a Dr at Columbia Pres. Has anyone been treated their for CC? I am finding that the Clinical trials seem to be "being at the right place at the right time" I bought 2 potential trials I looked up to Dr Zhu and he said he didnt think much of them. How do you research them?

Re: New member

Susan:
My thoughts are with you and your husband. I watched a webinar today from Mass General for patients with intrahepatic cc. It will use gem/CID and possibly proton beam radiation. You may want to look into it. The info will be on here as cc.org hosted the webinar.
I have never been told what be I have, so I will have to ask. And I have already had stereotactic radiation thru Sloan so I don't know if I would be a candidate anyway, but it's worth a look.
Did any of the doctors suggest radiation?
Good luck with your search, and keep us all informed, as we all care. This is a wonderful support group.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: New member

Kris, no they did not discuss radiation at this point but maybe because he went through radiation on his arm with his previous cancer. I will look at video but he was already on gem/platin so he did not respond to that course. Thank you

Re: New member

Kris...thanks for mentioning the webinar.  It should be available for viewing within the next few days.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: New member

Hi Susan,

Welcome to the site. Sorry that you had to find us all and I am very sorry to hear about your husband, but I am glad that you have joined us all here as you have come to the best place for support and help and I know that you will get a loads of both from everyone here.

I really can't add too much to what others have already said to you but I wanted to stop by and welcome you here. I do hope that you will keep coming back here as I feel that you will get so much from coming here. I came here after my dad was diagnosed and everyone helped me so much. Shout, scream and vent if it helps. You are not alone now. We are all here for you, we know how you feel and we care.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: New member

Hi Susan,

I would also like to welcome you to this site. I'm sorry to hear about your husband, but you have come to the right place for comfort, information,and friendship. I'm sure it is very hard keeping your husband's illness a secret, so hopefully it will help you to talk about things here. I hope your husband decides to tell people about his illness because I am sure he would be met with so much support. I think men have a hard time opening up sometimes and some view illness as a sign of weakness and worry that co-workers won't think they can handle their job. Sadly, some do get really sick and have to leave their jobs. My daughter cannot work anymore and is on disability. That doesn't mean she is weak. She is so strong, positive, and hopeful. I wish both of you all the best. Please continue to visit us.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.