marylloyd

Gissy,
It very well could be the antibiotic. My husband has the same reaction with Bactrim. We thought he was sick from all of his liver issues and as soon as he quite taking Bactrim he was fine. He is allergic to Cipro but just breaks out in a beautiful pink, bumpy rash! Best wishes ! Mary

Hi Betsy,
I feel so bad for you. Four more weeks would feel like an eternity. Your situation is what really makes me worry every time they go in and poke and scrape Tom. How long before he starts leaking. It’s very scary and a miserable situation for you. I have always done a lot of research on supplements and Tom has been taking them from the beginning. I really believe they have helped him a lot, probably some more than others. I concentrated on things that helped prevent cancer more at the beginning but now I’ve been looking more at things they recommend for liver disease and that’s where the alpha lipoic acid fits in. You just have to decide whether you want to try them or not- since you’re not doing chemo there shouldn’t be any reason to not try them. Just do some research here about what we’ve all used and then decide yourself I guess. I hope things get better for you soon. With winter approaching it probably makes you feel even more down. Cleveland in the winter can be tough! Take care,Mary

Hi Bob,
I’m just curious- have your CA19 tumor markers increased any degree the past few months during all of these infections and inflammation? My husband’s seem to jump drastically every time he has an infection or a procedure done and they never come back down again. They are up over 3500 now. I’m not really worried about the cancer being back- they see no sign of it at all and the markers just started jumping skyward about the time they started stretching and biopsing his ducts every couple of months. I keep hoping they can just leave him alone for awhile and see if he gets better but that doesn’t seem to be in the cards. He has 2 stents now that will have to be removed in a few weeks. I’m beginning to think he may be better off with an external drain like you had for awhile. If they can’t get rid of these abcesses with stents then they need to do something from the outside so they don’t have to keep doing all of these ERCP’s. It seems like all they do is cause more infection and inflammation- a vicious cycle as you know. I’m glad you found this site- you are an inspiration to all of us.
Take care, Mary

Rachael,
Your Dad was such a special guy, it’s understandable that you still miss him and always will. Anyone that was lucky enough to know him, even here in cyberspace, misses him dearly. Grieving is a long hard process and everyone handles things differently. I know that if I lose my husband who is also my very best friend that I will probably cry for years, in fact I sometimes cry now just thinking about it! So crying is not a bad thing unless you are feeling so blue that it is affecting your ability to function and take care of your babies,etc. You may just need some counseling or join a support group so that you can talk to people who understand. Close friends are great but unless they have been through this it really is hard to fully comprehend the sadness you are feeling. Please feel free to come here and vent or cry or ask for help in any way. I hope things do get better. I guess we all just have to take things one day at a time! Take care, Mary

Issisman,
I think the problem people here are having is understanding why your husband is in so much pain. My husband has been dealing with this for four plus years now and the only time he had pain was when he had a drain that was obviously resting on a nerve. You really don’t hear about people in pain unless they have a tumor causing it. Your husband’s case is really very strange and personally it makes me think maybe he should go to some new Drs., but I know you and a lot of others are against changing Drs. My husband and I have no problem going to new Docs if we think they can have a new perspective on a situation. We may be doing that ourselves soon even though we are very comfortable with everyone we deal with now- we just feel they may be out of ideas. Your husband’s case seems like one on the show “Mystery Diagnosis”. I have to say that show sometimes gets on my nerves because I can’t believe people put themselves and sometimes their children through so much agony , believing Drs. when they tell them that nothing is wrong until they finally find one that figures it out. I really wish someone could give you some answers. I honestly have seen too many people on here and in my family put up with less than adequate care that causes them a lot of agony and eventually death. Each to his own obviously but for your husband’s and your sake I don’t think I would just assume there’s nothing else to do. It really doesn’t make sense. Mary

Wow, Betsy. They have resorted to trying to glue you back together?! At least they haven’t suggested using our favorite fix-all, duck tape!! Ha! Seriously, I really hope they can figure out what’s going on and do something about it. You’ve suffered with this way too long! Best wishes for a very successful procedure! Take care, Mary