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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 13
I ask myself the same questions everyday. My husband told me how it makes him so sad to see me so sad. So I am trying to enjoy our time together and make each day a gift. I hope that is helpful. You are not alone.
Dear SW55, I just wanted to try to help with side affects. My husband is on GTX, 2 weeks on and 1 week off. Regarding the skin issue with his feet. I started using utterly smooth (CVS) better than any other cream we tried. Start before it starts happening. This is the first treatment that his hair fell out but he was bald to start,just looks more handsome!! He has been feeling pretty good since the dr added 3-4 days of steroids after treatment, not nauseous but gets hiccups for on and off for 2 days and a lot of burping going on. But we will deal with that as long as the drugs are working. Good luck.
Hi All, what do you know about these Phase 1 trials that are geared for targeted therapy. We went for our appointment yesterday and the dr did not think my husband is responding to Xeloda. He also did not respond to the gem/platin so they are suggesting trials. Has anyone been involved in these trials and what was the outcome. Very Discouraged! Susan
Hi Laura. A similar protocol was recommended to my husband by Sloan in NY and we intend to pursue it. It is called cell path. It is not covered by insurance so I'm not sure even if they find a drug that is compatible it will be covered by insurance but the system may be different in Canada. Ask that question.
Does anyone have experience with this situation and what was the result? We certainly will fight the insurance company but wondering if anyone has gone down this path.
Hi Bananagirl, I too am a new member. I would first ask what kind of CC. There are 3 different kinds. It seems from the 3 opinions we got, they all agree that gem/some kind of "platin" are the #1 chemo drugs to start with. I was told that 50% of CC patients respond to them well. My husband unfortunately did not but is on Xeloda which is an 5-FU drug (there are many different names). He also was not a surgery candidate. Stage 4 CC. READ everything you can about this disease. Knowledge helps and going to the appointment with an ipad or notebook to keep track of all that is discussed. I also keep a daily log of how my husband is feeling, his weight, schedule for meds. This is very helpful mostly when you go for other opinions. I would go to the largest/best reputation cancer center that is reachable. This website has helped me emotionally and medically. Good luck. Susan
Hi Jayne, I thank you for your kind words. What type of CC does your husband have? My husbands is Intreheptic. I understand from this website that he may not show any symptoms like the jaundice with this type of CC. Not sure this is helpful to you but there may be a clinical trial starting in a few months at Mass General- Dr Zhu. Sloan may have one starting. We are waiting to hear back from both centers. There is something called a K-ras mutation and if he has this he may be a candidate for the Sloan trial. Have you heard of this or Cell Path? They suggested that as well, from what I understand (not covered by insurance) it is a blood test that they put in 10-15 petri dishes with that many different combinations of chemo to see what your personal blood responds to. Has anyone suggested this or what the next step is for your husband. We will find out the cancer markers on Tuesday (whether he is responding to Xeloda). CT scan will be after he completes 3rd round of pills. Trying to stay positive, Susan
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
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?
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.
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.
Thanks Lainy, It is easier right now while we are sorting things out, drs, etc not to receive all the calls but I agree with you that I cannot go on much longer with this facade.
Kris, Thanks for the dr recommendations. We are seeing the Saltz team not Saltz but someone under him at Sloan. I think her name is Dr Reidy and at Mass General we are seeing Dr Zhu.
Dear Lainy, Thank you. I have had your support over the last few months but just didn't post but Janey's story was so close to home. This website is wonderful as well as the brave "family members". I just didn't know where to begin. I am so alone here. My husband is just not ready to tell our friends and my 2 daughters know as much as they need to know at this point. I will let you know how we proceed with the next 2 appointments and if I learn anything medically that can help someone else.
Hi Jayne, I am a new member as well and am relating to your situation. My husband was diagnosed with Intrahep cc in October 2012 at least that is when they realized it wasnt just a spot on his liver and that her had stage 4 cc. He is healthy and no one would know (in fact other than our closest, no one does know and I am living 2 separate lives)
He had another issue 2 years ago so he was having CT scans and that is how it was found. He has had 3 rounds of gemi and oxy and the CT scan showed it grew and it wasnt working. We are now on 2 round of Xeloda. We will not know results for 4-5 weeks. But to address the milk issue. My husband is a huge milk drinker. Not sure how this relates to cc? We are going to Mass General and Sloan this week for our 2nd and 3rd opinions. I am concerned that they will tell us there is nothing more to do than what we are doing already. Other than being tired you would never know he has this horrific diagnosis. Your story motivated me to come "out of the closet" to share my story and seek help. Thank you.
Posts found: 13
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