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(7 replies, posted in General Discussion)

Mary, My husband is 40 and diagnosed in 9/2011with stage 3 CC. He is inoperable and has tried several chemos. The tumors keep growing. He has also been in alot of pain. the oxycontin and oxycodone for breakthrough pain worked for awhile, but then we had to keep increasing and it seemed to lose its effectiveness. His Onc. sent us to pain management and they switched him to methadone which seems to help better for now. The doctor recommended a nerve block of the celiac ganglia which we are considering. He said that if it works, it could take away all/most of the pain, and possibly if he can get off the pain meds he could drive again. Something to check on.My husband didn't like the morphine either when he had it in the hospital. There are many other things out there. The pain dr. also suggested a pain pump that they put in the body to help with pain.

Hi everyone! The pain doctor gave us several options including a nerve block to the celiac ganglion. We are considering this. Any one have any advice?Thanks.

My husband is considering stopping his xeloda, and gem/cis didn't work for him. Back in Sept. 2011 OSU said he had 6 months to one year. He has lived 6 months. How do we know when it is time to call hospice in?I heard that your doctor has to write a recommendation that you have six months or less to live.  He doesn't really want to try any other treatments and surgery is out. When hospice comes into the picture, will he still see his oncologist or is everything through the hospice doctor's. His biggest wish is to stay at home and I have done everything I could think of to make that possible for him. He is in a bit of pain and we will see a pain management doctor this week to get it under control  hopefully. We are just nervous how well they will help him. Does anyone else have a lot of pain from this cancer?

Pamela, My husband had ulcerative colitis for years  and resinol is wonderful.You can get it behind the counter at  target or kroger pharmacy without a prescription. When my son was a baby an older lady told me about it.My husband loves it. Can Lauren take Immodium for the diarrhea? My husband has also experienced the diarrhea with his cisplatin/gemzar combo. Now he is on xeloda and I don't think this has been as much of a problem.

Phil,I am very sorry to hear you received such bad news.Can they put an external drain in if they can't do ERCP? Also, my husband is on ursodiol which is a bile thinner, you could ask about this.We have a healthcare power of attorney set up for my husband and wills already done. You may want to talk to Gerry about what all he wants done to preserve his life and maybe even talk about a DNR ( do not resuscitate) order and also funeral arrangements. These things are not easy to talk about, but I feel better in knowing exactly what my husband wants.

Sallypa, Like it isn't enough to just try to help you love one deal with the cancer alone, but there is all this other crap that you have to deal with too. When we switched doctor and hospital during chemo treatment. It took me a month of phone calls to OSU to finally get records and radiology reports sent to our doctor. The stupid excuses I kept getting from them was ridiculous. They make it so much work to switch, but I am so glad we did!

sallypa, My husband is on the gem/cis cocktail. The cisplatin can harm the kidneys, depending on the dosage.They told me the higher the dose the more chances of problems. I have heard they can add a drug called manitol to the cisplatin to help protect the kidneys. Sorry, I don't know much else about it.

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(13 replies, posted in General Discussion)

Kandre, At first my husband had plastic stents. The first ones were exchanged five weeks later. Then they were able to put a larger diameter stent in and exchanged that 8 weeks later. Eight weeks later again he had another exchange, this time metal wire mesh stents. Our dr. told us these were permanent and they should last 6-9 months, then he might need the external drain. The reason being he told us is that the tumor can grow through the mesh. They had such a hard time getting the stent in the first time because the tumor had completely blocked both ducts off. The third replacement was tough too because he had been doing chemo and the dr. siad the chemo makes the ducts less pliable and the tumor had contorted the ducts more. The stents have worked wonderful in keeping his bilirubin down, although usually after every procedure he gets infection and needs antibiotics. I hope your husband can come home soon and feels better. This disease stinks!

My forty year old husband was just diagnosed with CC in September. We were absolutely devastated.This site has been so helpful in providing resources, advice, support, and prayers. The people here know exactly what you are going through.There  aren't enough words to describe how horrible this disease is and what it does to your loved one.Thanks to this site and the wonderful people, no one has to suffer alone. Thank you, Tonya
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Eli, My husband is also on the gem/cis. His worst problem is  the chills and nausea. He also takes the decadron three a day for three days after chemo,then one day for two days.He also takes compazine which is helpful. He takes Emend also for three days  from chemo on  which has been wonderful.

MK,In Sept.my husband's bilirubin was 28, it is now 1.He started of with three stents.They were changed five weeks later.When they changed the stents, they were able to increase the size of the stents so now he has to have them replaced every 8-9 weeks. THe stents have helped tremendously. They are not a sign of giving up! They put the stents in through a procedure called an ERCP where they go in through the mouth and down your throat  and eventually in to the duct area. I was told they put dye in to see the blockage, then inflate a small balloon and then slip the stents in.  I think it usually takes about an hour, but my husband's first one took 3 hours because the tumor had blocked several ducts and it took alot more time. They usually give a local anesthetic, but last time they knocked him out completely because the local doesn't work very well on him. The difference I have been told between metal and plastic stents is the plastic stents need to be changed and the metal ones are permanent and don't get as gunky. If you have metal stents, I was told that you can't do radiation.My husband is also on ursodiol which is a bile thinner to help the stents drain better. My husband is also on the same chemo as your mom.Hope this helps.

My husband gets so frustrated because several times a day he will get severe chills. He doesn't have a fever. Could this be the cc, his chemo(gem/cis), or the oxycontin he takes? Does anyone else get these chills?He will use an electric blanket but sometimes this takes awhile.

Eli, this is probably a stupid question, but if cc is estrogen sensitive, is this true for men too? I know we all have both hormones in our body, but would this info be true for men too since they don't have as much estrogen is  their bodies as a woman?

My husband also had terrible itching. Before the stents hsi bilirubin was as high as 28. Now with two biliary stents, his bilirubin is down to 1 !. His are plastic and they need to be changed every 8-9 weeks. If they put in metal stents, which are permanent, they can't do radiation. As far as the ostomy, my husband does not have a colon. He had an S- pouch surgery five years ago due to ulcerative colitis. FOr 3 months while the connection healed, he had an ileostomy. The Hollister company makes supplies and are extremely helpful. Another great resource is an ostomy magazine called the Phoenix. It has great supplies and suggestions and ads for companies that often offer samples of different products you can try. Did you know they make an ostomy bag with a charcoal filter in it to help with odor? I can understand your exhaustion with driving so far and still trying to work and parent 4 kids. i only have one child, but do lots of driving when my husband is in the hospital or has chemo treatments.It is very rough on you. I know your Mom  doesn't want to leave her home,but if you are her only family, does she understand how hard this is on you and how much you want to help her?

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(12 replies, posted in Nutrition)

Hi everyone! I just received the samples from Scandishake yesterday. They sent me three full size packets of their shake mixes and a full size can of their scandical. We haven't tried them yet, but I am very impressed with what they sent.
Definitely worth trying and their prices aren't too bad.

Margaret, I know we don't really know each other, but I feel so deeply for your loss. From all your posts you have done everything you could possibly do. You are so strong to be able to fight this with Tom for so long. I pray  that a peace and comfort will come to you. I can't even imagine how hard it must be without your husband. I'm sure it will be my reality soon too.

Marion and Eli, thanks so much for the info. I will look into it more later today.I will also ask the doctor about it next week.

I was doing some surfing and found a site about DCA, sodium dichloroacetate. It was found by a doctor at University of Alberta. I don't believe it is medically approved. The claims sound a bit fishy. Has anyone else ever heard of this or tried it? Thanks

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(12 replies, posted in Nutrition)

I posted this info on another thread and Marion asked me to place it here.Hope its useful.My husband has lost 52 pounds and we have the same problem with the ensure plus. we then tried Carnation instant breakfast. This upset his stomach, maybe too much dairy. This site gave me some great nutrition references. I used them to do some searching on my own and here is what I found. Nestle makes a product called benecalorie and boost resource breeze . I emailed them, they do not offer samples, but you can order thorugh thier website. Abbott Laboratories makes the Ensure products. I emailed them for samples. They sent me an email with a 1 800 #. After calling and talking to Amanda who was soo helpful, she is sending me samples of Ensure Enlive which is a fruit based supplement. She also told me of  a flavorless powder called Polycose you can mix in and a fruit punch flavored liquid called Promod. Everything can be ordered from their website or she said your local pharmacy can special order it for you. Their number is 1-800-986-8926 , I don't know if this will work for you, since you are in Canada, but you can try. I also contacted a company that makes a product called Scandishake. They have great recipes on their sites for things besides just shakes. They also make a sprinkle on calorie booster called Scandical. They are sending me samples of both. The number is 1-800-472-2634, they are based out of Alabama. This is all I have found on the internet. Of course, almost everything has to be special ordered and isn't cheap. As for the steroids, My husband takes decadron two a day for three days after chemo and just recently added on days four and five one pill to help with the nausea. They do help with the appetite. We all take enzymes at  our home to aid digestion sometimes. We especially like Papaya  enzyme plus that I get at the health food store. It has mint and chlorophyll added to help upset tummies. Hope this info helps.

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(48 replies, posted in Introductions!)

Eli, My husband has lost 52 pounds and we have the same problem with the ensure plus. we then tried Carnation instant breakfast. This upset his stomach, maybe too much dairy. This site gave me some great nutrition references. I used them to do some searching on my own and here is what I found. Nestle makes a product called benecalorie and boost resource breeze . I emailed them, they do not offer samples, but you can order thorugh thier website. Abbott Laboratories makes the Ensure products. I emailed them for samples. They sent me an email with a 1 800 #. After calling and talking to Amanda who was soo helpful, she is sending me samples of Ensure Enlive which is a fruit based supplement. She also told me of  a flavorless powder called Polycose you can mix in and a fruit punch flavored liquid called Promod. Everything can be ordered from their website or she said your local pharmacy can special order it for you. Their number is 1-800-986-8926 , I don't know if this will work for you, since you are in Canada, but you can try. I also contacted a company that makes a product called Scandishake. They have great recipes on their sites for things besides just shakes. They also make a sprinkle on calorie booster called Scandical. They are sending me samples of both. The number is 1-800-472-2634, they are based out of Alabama. This is all I have found on the internet. Of course, almost everything has to be special ordered and isn't cheap. As for the steroids, My husband takes decadron two a day for three days after chemo and just recently added on days four and five one pill to help with the nausea. They do help with the appetite. We all take enzymes at  our home to aid digestion sometimes. We especially like Papaya  enzyme plus that I get at the health food store. It has mint and chlorophyll added to help upset tummies. Hope this info helps.

margaret, I am new to this site, i just started posting yesterday. My husband was just diagnosed in september. I read pages and pages of all your posts the other day at work. I was completely impressed of your dedication and strength. It also scared me a bit to know we have alot more to go through.My husband has hyler cc with a klatskin's tumor. Surgery may not be an option and he isn't sure he wants it. He has done three chemo treatments so far. He is 40 and we have an 11 year old son. I will keep you in my prayers. You have spent so long caring for you husband and your life has been so hectic, try to rest and do some nice things for yourself.

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(48 replies, posted in Introductions!)

Thank you pamela,lainy,and eli for responding.We went for a second opinion to a medical oncologist and we liked him so much we may switch. This is such a hard decision, but he is much closer to home( right now we drive an hour one way for all treatments and the hospital), and he is much nicer than the oncologist we have now. He had chemo #3 on Wed. and his CA19-9 went down. I think this is good. Does anyone know if this means the tumor is shrinking? We didn't have a chance to ask the doctor because we got the results right before the end of the day because they had to do a second blood draw. I try to be very supportive of whatever he wants. I want him to live, but I want him to enjoy his life also. I watched my Dad suffer for three years with bone cancer. It's so hard to watch him everyday, because I see so much of a repeat of my Dad. I thought I had come to terms with his decision, but there is a part of me that keeps looking for new info,treatments, anything, which he isn't interested in. When he was first diagnosed, they gave him 6 months to maybe a year. At first, I felt like he could die any day because there were so many ups and downs. We were in the hospital alot, he had blood transfusions, infections, and several stent exchanges, and a complication with some internal bleeding. Things have finally levelled off more and it's been at least  two months since he's been hospitalized. The pain med regimen has finally been working and no more tears and crying from the intense pain. It's so hard to watch someone suffering in pain and there's not a whole lot you can do. Eli, about your daughter, she is fully aware. I talked with a therapist at the school I work at and wondered the same thing about my son. He is very private and doesn't show much emotion. Unfortunately he was with me at the hospital the day we received the news, which I feel bad about. He remains hopeful that his DAd will be healed . He is more in denial that his Dad  will die and doesn't accept it. That's fine. I am very honest with him and told him his Dad could be healed, but more than likely he will probably die. We have shared most info  from the doctors, but he doesn't ask a lot of questions. The therapist said that he doesn't want to accept the reality of it, but everyday he sees his Daddy not feeling well. Seeing his Dad crying from the pain has been hard for him. I have arranged for him to go spend times with his friends on weekends to break up some of the time. Kids deal with this in their own way. It may seem unfeeling to us, but it's very scary to them. They think what does this mean for their life and how will their life change. I try to reassure my son all the time I am always here for him.I will pray for you and your family.

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(48 replies, posted in Introductions!)

Jim, He was diagnosed at age 12 with ulcerative colitis and fought it for many years. Five years ago he had his entire large intestine removed.I guess he is tired of always being sick and doesn't want to live his last days in pain or complications from the surgery. He also hates being in the hospital and the surgery requires a lot of time there.

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(48 replies, posted in Introductions!)

Eli, I too am new to this site. My husband,who is 40, was just diagnosed with cc and PSC in Sept.We also have a child,son, who is 11. I know exactly what you are going through. No one can prepare you for something like this. I lost my Dad five years ago to bone cancer.  my husband  has stage III cc with a Klatskin's tumor.The other problem is that the cancer is in the hylum and also extra and intrahepatic with lymph nodes involved. We are doing the gem/cis combo and he is on his third treatment. They would like to shrink the tumor in hopes of surgery, but my husband doesn't want the surgery and there is a possiblity if the main blood vessel is involved they can't do surgery. This site has been awesome in info. I have used many tips on nutrition and supplements. My husband's nausea has been horrible also, but seemed to do better these last few times with Emend and decadron. The dissapointment and depression is horrible with this whole situation, but my faith in the lord  and the love of others has helped. I know it is hard, but try to find something ,even little things to be thankful for. When I concentrate on these things, it helps .