You are not logged in. Please login or register.
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: 9
I am so sorry to say that I lost my husband to CC on October 10. We were told on the 5th that the chemo was not working and that the cancer had grown significantly (following a CT scan on the 4th). My Steve was alert and talking on the 9th, but was fading quickly. He was able to talk to the pastor and make arrangements. He went peacefully the next day with his family at his side. After a 10 month battle, it is over. What a devistating disease. I don't know what we could have done differently outside of a transplant, which the oncologist said was out of the question (although I don't know why). He will be terribly missed.
My husband was diagnosed with CC in Dec/Jan. He has been through the traditional chemo of Cisplatin and Gemzar. He is "not a candidate for surgery". Due to permanent hearing loss, he was taken off the Cisplatin back in May or early June. Since then, the stomach pain has returned (it had gone away completely in late February), his tumor has become more dense, and his tumor markers sky rocketed! He now is on Carboplatin with the Gemzar, but Carboplatin is an "older" chemo drug and isn't recommended anymore since Cisplatin is proven to be much more effective. We are now looking for other alternatives since his doctor seems to be unsure as to what to do at this point. We are considering both Emory and Cancer Treatment Centers of America. Our Oncologist discourged us from CTCA since it is not a university-based hospital. Both have their pros and cons from what I see. We live in Georgia and there is a new CTCA opening here in about 2 weeks, but we also have Emory in Atlanta available to us. Any suggestions or experiences you can share?
I'm back to finally answer some questions. Steve's CC is intrahepatic. the thrombosis is complete. I don't know what to expect from the thrombosis on top of the CC, but the Oncologist doesn't seem to be too concerned about the thrombosis. Steve is really feeling pretty well. We will talk to Onc today about a new development, he has two hernias that has trippled in size over the past month or two. It always seems to be something! One step forward, one step back.
My husband was diagnosed with CC around the first of the year and has received 3 rounds of chemo. He had a CT two days ago, has been feeling really good and is off all pain meds so we hoped for good results! One Step forward, two back. The CT revealed a portal vein thrombosis. Reading up on it on the internet is devistating. He is on blood thinners which we have to administer through daily injections. But it looks like even that is probably not going to work according to the websites. He went from feeling great to being terribly depressed. Someone enlighten me about PVT, please. What do I expect and do I really want to know? He'll be 55 in June and will then be eligible to retire. He wonders if he should just give up after that!
Yes, I realize that this is Bile Duct cancer, but what do we do about my husband vomiting up bile? Is there something that will keep him from having the bile back up into his stomach? I think that is what started causing the pain that first sent us to the doctor. He had severe upper ab pain for quite a while. Nothing seemed to help. Expecting pancreatitis, he had a CT that showed the tumor on his liver. Of course, they didn't know from where it had originated and ran all kinds of tests. The endoscopy revealed a build up of bile in his stomach with a lot of irritation. Now, after two months of chemo, he is having occasional pain and then vomits bile. Is that common? Of course, his terribly diseased gall bladder has not been removed due to the cancer. Most of the time, the pain is not a problem. He is even off morphine! Yahoo!
I too would recommend the "Anti-Cancer Book" by David Servan-Schreiber. He really gets into nutrition. Your sister needs fruits in her diet, but not processed sugars (white and brown sugar). I use Agave and Stevia on my husband's cereal and in his tea. I have also heard that vegetables should be cooked! I really don't know exactly why, maybe due to the difficulty of digesting a raw diet or due to toxins?? You were right that berries are particularly important in fighting cancer. What is specific to CC? I don't know, but I have had my husband on a low glycemic-index diet with as much organic foods as possible. He seems to be responding well, I pray!
Hi JBC44. It sounds as though you and I are in about the same place. My husband was diagnosed right around the new year, also stage 4. He's received 3 rounds of chemo, but he gets Gemzar each time and Cisplatin once per round. As you said, some days are pretty good, others are really LOW. I am afraid that I can't help with the insurance question. Luckily, I just retired and have Steve on my insurance, plus he gets insurance through his work. I was shocked to find out that one day of chemo (both Cisplatin and Gemzar) runs $5800! We have not received any bills yet. I only pray that between the two insurances, our part will be significantly reduced. I just want you to know that I am thinking about you and your husband. This really stinks, doesn't it? Who'd have thought we'd have to be visiting at a website like this. Still, the support is encouraging! Is there a church or other civic group in your city that might be willing to help out?
Wow! Thanks everyone! What quick responses! I truly appreciate that. Marion, the burps are not hiccups. He had those early on with the chemo. These are definitely dry heaves, but he burps up air with them. It is really weird unless you witness it. We will definitely discuss it with the Onc tomorrow. They keep changing his nausea meds, but that doesn't help b/c he really isn't nauseated. It happens at different times of day from immediately upon waking to after a meal. Often as he is walking to the car after being at work for a few hours. Good thing I drive!
Thanks for the advice! I love this site, but hate to be here! Stil, I read so many positive posts! Now I don't feel that we are quite so doomed or alone!
Hello everyone. My husband was diagnosed with cancer of unknown origin just after Christmas. Come to find out a few weeks later that it is CC. What a blow this has all been, as you well know. He had a tumor on his liver, some small nodules in the lungs, and a spot on a rib that they were concerned about. He started chemo two days after the final diagnosis with Cisplatin and Gemzar. Our second opinion at Emory in Atlanta confirmed that our oncologist, Dr. Al-Hajj, is right on track. Right now, hubby feels pretty good! He is off his morphine and is eating well. Has lost 40 pounds, but was overweight before all this started. Although thin, he still has a belly. It that typical? Has no energy, but seems to be gaining a little back at a time and did some light yard work yesterday. He even goes in to work half-days when possible. He begins his third round of chemo tomorrow and will then undergo some tests to find out how he is progressing (had a bad reaction to CT contrast in the hospital!). We are in hopes of some good results considering his most recent bloodwork and the other improvements. Oh, he gets these weird belchy-dry heaves. It's like he is heaving up gas from WAY down in his body. This can go on for about 5 minutes. Occasionally, he will have a small amount of vomit, but it is mostly air. He is not really nauseated before hand. Odd. Is this common? Guess that's it for now. Great to finally get here. There was a mess with my registration.
Posts found: 9