Lost My Big Sister

Sorry I haven’t posted in a while. My husband is still feeling yucky, but is eating a little more.
One day I will feel so encouraged when he feels a little better and then the next day, he’s back to feeling weak. It has been an up and down thing.
We see the gastroenterologist on Fri. May 4 and he will be scheduling the ERCP for next week. I hope after the bile ducts are examined or opened with a stent, he will start to feel better. Thanks for all the responses to prior posts. It helps so much to have the thoughts and support from others.
God bless you all. ~~ Jean

Jean,
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!! Mary

Hi 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

Seasheller(Jean),
My husband has had many ERCP procedures, mainly to place stents. I’m surprised your husband needs his ducts opened if he isn’t showing signs of jaunduce.Is his bilirubin high? Anyway the procedure is usually done on an outpatient basis and is tolerated very well. The only problem my husband has had is infection and elevated enzymes. They say sometimes when they go in there they” stir things up” and that’s what causes both problems. They usually give him antibiotics. He is going in for a stent change a week from Mon. and I’m going to call ahead and see if he needs antibiotics since they haven’t prescribed them yet. I always worry that they will say they can’t get the stents in because the tumor is blocking the duct. Originally they could only insert one but now since his radiation treatments they haven’t had any problem at all. I am going to ask if they are able to see anything when they go in also. We never hear whether that is possible or not and it would be nice to know if anything is visible. All of this is such a worry. When you read of so many people succumbing so quickly it really tears you up and makes you realize how quickly things can “go south” as my husband says! I hope your husband continues to fight on and do well. I am sorry for all of you above that have lost your loved ones. I pray for your peace and comfort! Mary

My husband was going along symptom free and now all of a sudden the CC seems to be starting to show its “ugly face” as I have feared. He is going to go for an ERCP in a week and a half — don’t know whether the bile ducts are opened just with that procedure or whether it is always necessary to put a stent in. He is not jaundiced at all at the present time, but he just does not have a taste for so many different foods. It’s difficult to know what to fix for him to eat.

If there is anyone reading this that has had the experience with the ERCP procedure, I would appreciate being enlightened if it helped or not.
I know part of it is for diagnostic purposes, but opening the bile ducts is the other reason for it.
Heartfelt prayers and love to all.
~~ Jean

Hello Maryellen & Joyce — I’ve been wondering whether your loved ones had any treatment or what their symptoms were to have lost them in such a short period of time after diagnoses. There are many successes that we read about and then others have such a short life span — it’s heartbreaking to hear. My heart goes out to both of you!!!
~~ Jean

Oh, you made me tear up when you spoke about the slideshow – we had one of those for my mother, and she also looked great on Christmas. We had some wonderful shots of her in a bathing suit looking like a real movie star when she was younger – always looked so young and alive, people thought she was my sister. And we picked so much music that she loved, we found it hard to narrow it down because she was always singing and dancing – and I realized after the funeral that I had forgotten to include her all-time FAVORITE song, which was Harrison’s “Here Comes the Sun.” How wonderful that you played that for your sister – now I feel better about forgetting it for my mother.

My sister has been annoying me greatly since my mother’s death since she grieves differently and basically acts like nothing happened – just fills her schedule and stays busy and talks about how wonderful it is that we got some money from my mother’s death. I realize everyone grieves differently and I have to put aside my resentment because everyone in our lives is a treasure and your story of your sister makes me see that my sister could be taken from me tomorrow and she’s the only family I have left – except for my 89 year old grandmother. Thank you for bringing some perspective – I will hug my sister tight and let her know how much I love her (even though she drives me crazy!!)

Be well!

– Joyce