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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español.
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After over a year of chemotherapy, radioembolization, surgery, tubes, stents and a lot of pain my husband Terry lost his fight to this horrible disease. October 19, 2013.
Thanks to all of you. So far, our hospice has been wonderful. In particular, his case manager who has already changed her schedule a couple of times to accommodate our issues.
You are all wonderful.
Will keep you posted.
Lainy. Thank you so very much.
Dear Lainy. Somehow I knew I could count on you. Please send the list.
My husband was diagnosed last July (2012) with intrahepatic cholangiocarcinoma.
After trying to unsuccessfully remove the tumor in the biliary, Chemo gem/cis and then rounds of two other chemos plus 5-fu take home pump for 48 hours.
Radioembolization thru the femoral artery to both sides of the liver. One side in May the other in June.
His last chemo was August 8 at which time they decided to stop chemo for awhile. The jaundice returned and on August 21 it was back to interventional radiology where they discovered the tumor was blocking another part of the biliary. So, they put a tube through some other part of the liver and he has an outside drain with a bag. (This is how it all started only at one point he had as many as 3 bags with drains.) He was admitted to the hospital that same day for 3 days. Then, a week at a rehab nursing home for physical therapy as he was not able to walk, dress, or feed himself. He resisted the therapy for a week after which I brought him home. Once I made the decision to bring him home, a weight was lifted so I knew it was the right thing.
We now have hospice coming 3 times a week. The first couple of days were really hard with him having a hard time with his bowels.
He is not eating. He is drinking fresh oj in the morning and he likes soda during the day, although not enough liquids.
He sleeps almost all day. Yesterday he slept all day and all night.
Anyone have any ideas what I should expect?
Thank you for listening. This has been a long, hard journey - mostly for my husband.
Hi, Chris. My husband was diagnosed last July. He is being treated at roger williams medical and cancer center in Providence. We have a lot of faith in his cc team.
Dr. Katz. Oncology surgeon
Dr. Vincent Armenio chemo oncologist
Dr. Assanah oncology interventional radiologist
Dr. Stainkin (sp). Radio embolization.
Hope this hes
Pam, I am so very, very sorry for you and family for your tremendous loss. May Lauren rest in peace.
Michele, I know how you feel. My husband was diagnosed last July. Since then he has had three drains to relieve the bile, an operation to remove the tumor that did not work. Then, a round of gem cis, and another round of gem sis and another operation to hopefully remove the tumor, but that failed, too. After that more, chemo (stronger). We don't know if that's working or not. He has had radiation embolization (radiation beads directed to his liver). He is scheduled this Wednesday for radioembolization for the other side of his liver and then more chemo. In the meantime the chemo and/or the radioembolization is creating havoc (I think) on his memory. We do things in the morning and then he asks what we I'd because he can't remember. The fatigue he is experiencing has been debilitating. The whole thing really s&@!ks!
Thanks for letting me vent, too.
Hi, Lainy. I don't post too often, but I check the sight most every day. Actually, I spent a couple of hours one day following your topics with regard to your Teddy. You are a remarkable woman. Your advice has always been spot on and your support for all of us is invaluable. If anyone deserves a vacation, it's you. Enjoy!
Yeah! Glad you are more comfortable.
Mary, hope all goes well with the procedure. Good thoughts on their way to you.
Deepest sympathies. May he rest in peace.
Pam, thinking of you and Lauren and praying for an excellent outcome.
I am so very sorry for your loss. May she rest in peace.
Thank you! This is the best information I have seen on this horrible disease.
Thank you so much, Pam. Today was his second treatment with this 'cocktail'. So far none of the symptoms have shown up. I will be on the lookout, though. I hope Lauren is doing ok. Have been following your posts. Thanks so much for responding.
Take good care.
I just noticed he is also being given irinotecan....
The other drug is oxaliplatin. Thy are also giving him leucovorin which, i thiNK is in the shot he gts on monday to keep his white cell count up? Do you know anything about the side effect?
Thanks so much.
THANK YOU! Just today I was saying to myself, "I wish someone would take care of me." (then felt guilty) My husband has started a new chemo regimen that includes 5fu. Along with a 5-6 hour infusion at the cancer center he has a bag that he takes home that infuses for 46 hours. Can any of you share your experience with this type of regimen?
I don't post too much, but wanted to let you know how happy I am for you and Lauren. Look forward to hearing more good news for you. Lauren is lucky to have you. Would you please let Lauren know that she is in my thoughts and prayers every day.
Haven't posted lately, but look every day at this sight and the discussions. Needless to say, the information on the posts has been invaluable. Terry has been on a chemo regime of gem/cis since September. Two weeks on/one week off. He missed two separate weeks because of a low blood count. In the past couple of weeks he has had a fever ranging 99.9 to 100.0. We were told not to be concerned unless his temp goes up to 102 or higher. It only lasts a few hours. His temp has been good for the past week. One night he sweat profusely. Also the right side of his back has been giving a lot of pain. I use a massage wand and he says that helps. Also, he hates taking any pain medication, but will take an Advil once in a while. Yesterday he had a pet scan(this is the first one since all of this began). The doctor said there would be no reaction. Last night he was up from 3 am with a stomach ache. He actually took a nausea pill at 3 and 5 am. He's been taking a nausea pill every morning that has worked up til now. Since the chemo has started he has been very tired (normal, I know), but never nauseous. He hasn't had any chemo since 12/6. Whenever I say I want to call the doctor he says no. We do have an appontment with his chemo doctor next thursday for the results of the petscan. I guess I'm looking for some feedback. You guys are all great.
Hi, Lynn. Sounds like my husband is on the same tract. I did elevate his feet. They seem to have gone down a bit. Thanks for weighing in on this. Hope all is well with you
Thank you, Marion. He's laying flat right now so I'll elevate his legs right now. Will keep you posted.
My husband is in his third round of chemo treatment to shrink his tumor. Treatment is two weeks on one week off. He missed one session because his wbc's were too low. They are using gem/cis with anti nausea drip and benedril. On Thursday he had chemo. Felt great the next day. Yesterday he was totally wiped out. Today his ankles are very swollen. Has anyone out there had any experience with swelling? Thanks is advance for ay information.
You sound like a very brave, strong person. Sounds like you are in the care of a very competent Dr., too. I really wish you well in your recovery. Do you have good help at home?
Welcome and all the best.
Posts found: 1 to 25 of 38