December 30, 2006 at 10:44 pm #14962kris1214Participant
I hope your husband continues to do well. Your story gives me great hope for our situation. Do you live in Columbus, Ohio? We do and my husband just got diagnosed at age 41 with CC – your post caught my attention because you mentioned Dr. Bloomston. We have met with Dr. Bloomston and Dr. Martin. Is Dr. Martin involved at all with your husband’s treatment? We really liked both of them and they said they can operate on my husband. They said 9 out of 10 surgeons wouldn’t because of the size of the tumor.
We asked them who the best liver surgeons in the country are and they said the Docs at MD Anderson in Houston and Sloan Kettering in Manhattan. We have contacted MD Anderson and they said they really don’t do second opinions. Once they take you as a patient, they are under the assumption that they will be treating you. We do have his surgery scheduled for Jan. 24 at the James. We just want to go to the “best” place but how do you know what the best is????
Anyway, I just wanted to know if you were also dealing with Dr. Martin and what you have thought of your whole experience at the James. We are just in shock here with all of this and any info you can give me would be a great help.
KrisDecember 21, 2006 at 7:48 pm #14961marylloydParticipant
I’m sorry Jeff. I knew you had undergone radiation treatments and I hoped it had worked. It may work better early on, who knows. They have another patient at OSU that had basically the same treatment as my husband and she is doing well after 4 years. Our problem now is whether to take the chance of surgery again, knowing the tumor has shrunk significantly or to do chemo as a follow-up now and diet etc. and hope for the best. His surgeon is willing to try the surgery again if the next scans and bloodwork convince him that it would be successful. Of course they won’t know for sure until they get in there and they hate to put him through the trauma again. He has had several infections but I think he would be able to handle it alright. He has gained weight and is feeling good right now too. Tough choices. I hope you have success with your diet. I give my husband Maitake D Fraction pills, dried beet juice pills,cod liver oil capsules and fresh carrot juice daily. Who knows maybe the magic mushroom pills and carrot juice are the cause of his success so far. It sure hasn’t hurt. Take care. MaryDecember 21, 2006 at 7:29 pm #14960jeffgMember
Had follow up with radiation oncologist yesterday. shook my hand and said sorry I wish I could have done more for you. 3D conformal radiation did nothing for me. It did not reduce any discomfort or pain of the liver or neck area; still compression going on some where. Will go see regular oncologist tomorrow morning and discuss other options if any. I’m thinking of going 100% natural diet unless maybe steriodal immuno therapy is an option. I’m pretty set on not doing anymore ancient chemo drugs as I’ve felt felt great since being off chemo other than the discomfort when not taking pain meds. We’ll see what tomorrow brings. Cherrio for now. JeffDecember 19, 2006 at 2:06 pm #306marylloydParticipant
My husband was diagnosed in June with a Klatskin tumor. It was located in the bifurcation of both ducts. It was high in the left duct but only a mm. or 2 in the right. Because of the right duct involvement surgery was attempted but was deemed impossible. He had no lymph node involvement or mets to any of his organs. After a month of recouping from the surgery he started an aggressive regiment of IMRT radiation and Xeloda for 5 weeks. A month after completing that regiment he received high dose brachytherapy.Now 6 weeks after the brachytherapy he had his first scan yesterday and they can’t even detect the tumor. They showed us the original scan from June where the tumor was easily detected and yesterday’s scan. There is nothing there that can be seen on the cat scan. They are doing an MRCP in a few weeks and more bloodwork before they decide on surgery , Chemo or nothing. Our surgical oncologist isn’t even sure how to proceed, he said,” if you had mets or things were going badly we would know exactly what to do but you are doing so well we aren’t sure what route to take at this time.” Our oncologist made the statement that the tumor had just” melted” away. I know most of you never have radiation and seem to be wary of it but I can’t say enough about the treatment my husband has received from the Drs. at The James Cancer Hospital at the OSU Medical Center in Columbus Ohio. Dr. Mayr , the head of radiology oncology did a wonferful job and Dr. Bloomston and Saab have been on the “cutting edge”. I wish they had been able to do the resection in June but now he is doing so well that it may not be the thing to do. We will wait and see and trust their judgement. I do wish people would consider this route of treatment early on and that Drs. would recommend it more. It just makes more sense to me to “zap” the tumor right off the bat to keep it from spreading and coming back! Scar tissue is one of the few things to worry about but as our radiation oncologist said , she would take scar tissue over cancer any day! My heart goes out to all of you suffering from this disease and all of your families. It is such a difficult cancer to cope with because even if they reduce the tumor as they have with my husband you still have to deal with infections that can be just as deadly. He has actually had more problems with that than the cancer itself.Best wishes to all of you during the holidays and we must continue to work and pray for more reseach and success in treating this awful disease. Thank-you. Mary
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