marylloyd
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Amjlcar.
We’ve been told they can’t be replaced that’s why we have refused having one yet. My husband gets his plastic stent replaced every three months.The Doc keeps talking about metal but what has happened to your Dad is what I’ve been worried about. What happens if the metal stent causes problems? I hope all goes well. I really can’t give much advice just good wishes! MaryMy husband took Xeloda which is the pill form of 5FU. He really didn’t have any side effects. Others here have though. I think it depends on dosage. The larger dose you are given the more intense your side effects will be. Mary
We have the JuiceMan Jr. I don’t know what company makes it but I think my daughter bought it at Target or Walmart. It’s been through a year of much use and is starting to slow down a little but has worked fine up til now. Not too expensive either. Mary
Radio-frequency ablation is used for lung tumors. I watched Living with Cancer the other night and thay talked about that. It worked for the man on the show. Radiation is also used with some success. I wouldn’t just see one DR. I would get a second opinion. Good luck, I’m sorry your Mom is having to deal with this. It just seems like this cancer is relentless! Best Wishes. Mary
I make my own carrot juice with a juicer. I use 2 lbs a day to make 16 oz of juice. I buy the milk thistle and mushroom capsules at my local health food / supplement store. Mary
Cherryle,
Milk Thistle is for improved liver function and to help with jaundice. Carrot juice is full of antioxidants to fight the cancer and help immune system. My husband takes both of above then fish oil for the omega 3 benefits, maitake mushroom for their anti-tumor benefit and immune boosting ability, beet extract for liver and bile duct health. He drinks lots of green tea(iced now) and lots of spinach, broccoli and fresh fruits and veggies, very little sugar and meat. Lots of water too- ecspecially now because he is having some itching and a little jaundice. His stent was changed Mon. but it was about a week too late and must have been clogged. He hasn’t been itchy since his diagnosis last year. Hopefully both will clear up in a few days. MaryThe other thing my husband dealt with was an abcess. Sometimes those can occur around the drain site or in the liver. Have they done any scans lately that would pick that up? My husband was very nauseas and vomiting because he had an abcess that blocked off his bowel. He became very dehydrated and was in pain until they discovered that and drained it. He was instantly better. Even with our good Drs. it took 2 weeks to get them to actually look into what was wrong and it was a wonder it didn’t burst and cause sepsis. They took us more seriously after that incident and would always check things out right away if I called about something. I really think your Mom should see someone else if possible. You shouldn’t have to get upset to get them to listen! I hope you can get things worked out soon. Just hang in there and support your parents as much as you can. I’m sure they really appreciate it. Take care. Mary
Cherryle,
Is the drain actually draining? Your liver produces a lot of bile each day and it may fill the bag several times a day if it is functionimg properly. I was scared to death during one period my husband had so much coming out I called the Doc because I thought it was too much. At that time they had us clamp it to try and make it go through his ducts- they were double? drains so they were supposed to drain into his intestines too and the bile was taking the path of least resistance and going out the external drain. As far as Doctors I really don’t know how to handle it. We did go to another hospital and Dr to see what they thought but it was after his treatments and before the next step was discussed. I did feel better because they said the same thing his first team at OSU said. WE were also extremely lucky at OSU as far as his main Dr. He was hired and started one week before my husband became ill. My husband was his first patient at OSU and for the first couple of months it was like we had our own personal Doc. It was awesome because he would call us at home and chat and stop and spend time when Tom was hospitalzed whenever we needed him. He got busy pretty quickly though and things changed but they still always answer their phone persoally and get right back to us. The Doc actually still calls personally. I don’t think it would hurt to just see if someone else would review your Mom’s history and records. I really do think they would tell you if they disagreed with the treatment. This is life and death and not something frivolous so they shouldn’t mind doing that for you. Feel free to ask as many questions here as you want. I started coming to this site last August and it has helped a lot. We’ve all been where you are now and understand. It’s very scary and frustrating! Take care. MaryCherryle,
My husband had a lot of problems with his stents and drains initially. They could not get both stents in when he was first diagnosed in June 06. They managed to get one in his right duct which had to be relocated when they did exploratory surgery and then they placed an external drain to the other side. He had a lot of problems too at first. From June to Nov. he had 4 different external drains placed for different reasons and some because of their location would cause him a great deal of pain. He had one into his right side last fall that hurt so much he had to take oxycodone continuosly for the three weeks it was in. He never took any pain meds even after his initial surgery so I know it had to be bad. Eventually they were able to take all external drains out and now he just has one internal stent. I hope they can get your mothers situation under control. You may need to see another Dr and don’t feel bad about being outspoken about her care. I think I drove the Docs crazy at times with my questions but I think they respect my knowledge and opinions too. They know that if we are concerned about something that it is for good reason since our concerns in the past have proven to be right. So ask questions and be your mothers advocate if necessary. Don’t just let them write her off. There is a lot that can be done and she shouldn’t have to suffer with pain ,ecspecially if it is because of a badly placed drain or something like that. Take care and God Bless. MaryCJFrancis,
My husband took Xeloda along with his 5 weeks of chemo last fall. That was followed by brachytherapy. He was unable to have a resection but had excellent results with the radiation/chemo treatment. Like Jeff said it is a one-two punch. The Docs said the chemo would help soften up the tumor for the radiation to be more effective. My husband had his stent changed today and they said things looked good. No change from last time in Feb. The tumor is still gone. I really think chemo along with radiation is the best treatment course. Chemo alone just seems to wipe out your immune system to the point of no return sometimes!! Take care and good luck. MaryKris,
We asked at Pittsburgh in January because I was concerned that my husband’s CA-19 was still in the 225 range and they were telling us they couldn’t see a tumor. The nurse said it was nothing to worry about that people with cholangitis or cirrhosis even have markers in the 1000’s. I agree with Jeff, I think it is affected by many different things including inflammation and not neceesarily tumor growth. We’ve never asked Dr. Saab about it. I’m curious what he will tell you. Take care and don’t panic too much. Caroline Stouffer ( a blog on this site) said hers went from 14,000 to around 4400 in just a short time and for no particular reason. I think it just happens. Take care. MaryJoyce,
I’m sorry to hear about your husband. I wish you, your husband and your family peace and comfort during this painful time. It is hard for me to imagine going through what you are but it is obviously something we all need to prepare for. As much as we hope for cure recurrence just seems inevitable. God bless you and give you strength. MaryJeff,
He fessed up about the cookies when he got home but I found the other wrappers in the truck the next day when he was sick. Moderation is the key to everything! He just couldn’t control himself I guess but he learned that his body revolts against junk food now. It’s been trained for quality only I guess!! I ate a little candy bar last week without sharing it and I felt guilty. I won’t anymore!! Ha! Take care Jeff! Happy May Day! MaryJean,
My husband has a klatskin tumor with no mets to the liver or elsewhere. They tried to resect by taking out the left lobe and left duct but there was too much involvement into the right duct and they could not remove enough to get clear margins. When he first became ill they saw dilation of his ducts but they were able to see the tumor with an MRI and Pet scan. He is one of the very few on this site that have had radiation as a first course of treatment but it was very successful. He had 5 weeks of IMRT(a very high tech ,focused radiation) , followed by brachtherapy where they put wires right into his ducts through outside catheters and ran the radiation directly into the area of the tumor. Since having that done in Nov.’06 they have not been able to detect any visible tumor, We went to Pittsburgh in Jan to get a second opinion and they said the same thing. The tumor was gone. Our oncologist at OSU actually called the area that is slow to enhance on the MRI, dead cancer which was quite something to hear him say that. He has never been very encouraging. Tom took Xeloda along with his radiation and that is the only chemo he has taken. I am with you entirely when it comes to chemo. I really worry that it kills people more than the cancer. It seems like it completely wipes out your immune system. Read the Coburn blog if you haven’t already. I think his history is very interesting. He has not had any treatment as far as traditional goes and continues to do quite well. I think it really depends on the location and type of CC you have. Some is obviuosly more aggressive than others. The Cook blog is also interesting. I think his case is more like my husbands. He has been treated with a lo chemo regime and diet and continues to do well. I hope you find out something soon. I worry all the time too even though we have been getting good news, you still wonder when it’s going to change for the worse.I hate to be pessimistic but the more I read here the harder it is to be hopeful. The” in remembrance” section seems to be growing too fast!!Take care and feel free to vent any time. We’re all in this together!! MaryHi Jean,
Yes it is very frightening and frustrating! The only time my husband had problems with his appetite were when he was undergoing radiation and taking Xeloda. He had a lot of gastriis from what we figured was damage to his stomach from the radiation. That went away after about 6 weeks and he has been fine since. He has been doing too much and yesterday went on a trip for the day and ate VERY badly- he’s paying for it today. Nutrition is so impotant and when they can’t or don’t eat properly it is a worry. Has your husband had any scans or bloodwork to give the Docs an idea of whats going on? They are doing an MRI on my husband every two – three months just to keep track in case something shows up again. I don’t give Tom much dairy but I do make sure he drinks skim milk and he eats a little cheese occasionally.He was a dairy farmer so it’s hard for him to give up dairy entirely.When he was ill I made rice pudding and scrambled eggs and basically things that he could tolerate. He basically just forced himself to eat with me pushing as hard as I could to convince him how important it was. I guess your first steps should be to get the scans done and they may be doing the ERCP just to see if there is blockage. They may decide there is and place a stent. It is very strange that he doesn’t have jaundice. Although my husband was feeling ill for several weeks and became jaundiced almost instantly when his blood pressure dropped to 70/ 0 and he collapsed. I thought it was his heart but his skin and eyes were almost bright yellow and a few hours before I hadn’t noticed anything. Is your husbands urine dark and is he suffering from itching? Those are also signs of blockage.I hope they figure out what is happening so your husband can keep up his strength. Get a second opinion if you’re not satisfied with what they tell you. Take care and best wishes! Mary
