colleen
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Popebailie -The doctor that has done my husbands treatmemtns at Johns Hopkins is J.F. Jeff Geschwind. For his first three embolizations they used cisplantin, doxorubicin and mitomycin. His fourth and last treatment I know they mixed up the drugs some, but I don’t know what the combination was. As I said in an earlier post, unfortunately my husband has an abscess and infection now that is a rare complication (4 – 6%) of the treatment. Let me know if you would like any more information. – Colleen
Lana – My husband has intrahepatic, he has had his stents for 7 months, basically since diagnosis. As with your dad, his couldn’t be in a worse place and we also have artery and vein involvement. Right now we are battling an abscess and infection in/on his liver, this is a bad complication from his chemoembolizations according to his doctors. Right now we are taking things ond day at a time, with so little information it only makes it that much more frustrating. – Colleen
Celoi – I hope your dad continues to improve. I thinik we are both going through a similar situation right now. My husband was in the hospital last week for what we thought would be a simple stent change, instead it turns out he has a LARGE abscess and MAJOR infection in his liver. His doctore say that it is really bad and for the first time have told me they are not sure he will be able to pull through this. He is at home now on IV antibiotics and has a home healthcare nurse coming to check on him, although they feel my husbands abscess is a complication from his last chemoembolization, was wondering what the doctors have told you about your dads infection and if he also had an abscess. – Colleen
Has anyone else experienced anything like this????? I am terrified any advice would be appreciated.
Maridiana –
If you look under expericences there is a topic on Chemoembolization. My husband has had four embolizations and approximately 50% or more of the tumor is now dead. His last treatment was on 9/28 and now he has an abcess and major infection which is one of the worst complications you can get from the treatment. His doctors are hopeful but we are keeping our fingers crossed. Our treatments were done at Johns Hopkins, they were great at explaining everything, and I am glad that we had the treatments done – ColleenHi Michelle!
I wanted to update you on the 4th embolization that Fred had on Friday. The treatment went well but the recovery has been the most brutal yet. He has been in sever pain since Friday afternoon, even moving a tiny bit sends pain shooting though his stomach. He says it feels like someone is sticking a knife in his side and wiggling it around every time he moves. He also had some nausea the first two days but even without it he still hasnjmoneypenny wrote:I just wanted to comment on one thing you mentioned: Crohns Disease. I was doing an Internet search the other day on the gene that may cause cholangio, and I came across a certain gene, and it was also implicated in the development of Crohns Disease, diabetes and rheumatoid arthritis, if I remember correctly. I’ll try to look at my recent Internet activity and find out what it was I was reading, if you’d be interested. Not that it can really help, but it’s amazing how much the docs don’t know and it may help to know there IS a connection so it can help future sufferers.Hi Joyce – We have talked to his doctors about there being some connection between him having Crohns and CC, but they seem to think that they aren’t related. I recently read a study done at the Mayo clinic that linked the two, and we questioned his gastro doc about it and he still said he didn’t feel they were related. I guess we will never be able to answer why he got CC. The crazy thing about all of this is his Crohns is pretty sever so he is monitored very closely and has been having liver function and other liver test done every three to six months for the past 11 years do to the side effects the meds he is on for the Crohns can cause. Everything has always came back normal then he just woke up yellow one morning and has this horrible cancer. If you find the info you were talking about, I would like to see it so I could send it to his docs. – Thanks Colleen
I just found this on another site, It can’t hurt to contact the doctor who performed this surgery and get his opinion for your dad. http://www.curedoflivercancer.com/
ColleenCDR – Thanks for the great advice, I will look at the links you suggested. I was also the child of a cancer patient, as my Dad was diagnosed with lung cancer when I was 18. I remember being so confused and scared, and I just want to make sure my girls don’t feel the same way. Now 18 years later I am reliving the cancer nightmare all over again and it is no easier as an adult as it was as a child, infact I think it is harder, as I am more educated and understand fully how horrible cancer is. I can’t imagine how difficult this is for you, and my heart goes out to you and your son. Your right “We all are in this together.” Colleen
I have two girls 9 and 5 years old. I know my 5 year old doesn’t understand what is happening to her Daddy, but she does ask all the really tough questions. I thought my 9 year old understood how sick her Daddy was, until last week when she asked him a question that started “Dad when your cancer is gone can we . . .” I am trying to keep thier lives as normal as possible, and I don’t want to scare them, but I think they need to know just how serious his cancer is. If any one has any suggestions on how I can help them to better understand how sick their Daddy really is I would appreciate it. – Colleen
Kimk,
All of us here understand your pain. I have had the same deep pain in my chest since my husband was diagnosed in March and sometimes the anxiety is more than I can handle. This site is wonderful, if you have questions or if you are looking for some support, there is always someone who has information or something to lift your spirits. Although I can’t give you answers to your questions about a transplant or spreading as my husbands cc wasn’t found early and he isn’t a candidate for either, I will keep you in my thoughts and prayers.
ColleenMichele – Thats great news about the 2 tumors, I hope you have positive results on the third one. After every treatment the doctor tells us he HIT it HARD. I only hope he continues to be right! I will keep you posted on how things are going. – Colleen
Robyn –
All of this is so heartbreaking. I have noticed my husband slipping lately also. Just over a month ago he was cutting the grass and doing things around the house like nothing was wrong. Now his energy level has droped and he has lost all the weight he had gained back since he was diagnosed in March. I am so glad we have this great support system within this site, otherwise I don’t know how any of us would make it through this. – Colleen
