Discussion Board Forums General Discussion Treatment options

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  • #14111
    marions
    Moderator

    Hello remisa….I am sorry to hear of your Mom’s encounter with this disease and would like to welcome you to our site. Remisa…it happens frequently for older postings to be addressed. This one dates back to 2006 and I doubt that this Kathy is still visiting our site. By using the google search function (top, right hand side of page, entering cryosurgery) you will be able to read up on two previous threads.
    I am wondering about where your Mom is being treated and whether her jaundice has been addressed.
    Please, stay in touch. We care.
    Best wishes,
    Marion

    #14110
    remisa
    Member

    Hi Kathy. Recently I am trying to search for Cholangiocarcinoma’s treatments and I found about this cryosurgery, but still not sure want to try for my mother or not. She got diagnosis of CC since Jan 2010. Right now her condition is so weak and jaundice already. She does not want to do chemo or radiaton either. It is spread to her liver and already too big (about 10 cm).
    My question is, did you let Mark tried with cryosurgery? I hope all the best.

    #14109
    stacie
    Member

    Good Luck Kathy, Let us know what you decide. I’ll be looking into the cryosurgery as well, so keep us updated there as well.

    One thing we’ve learned in the last 6 months is that, there are endless opinions (almost always differing) and endless amounts of decisions to make. We just keep researching everything and never be afraid to ask questions.

    #14108
    kathysue
    Member

    Thanks for all your comments. I do believe Mark is not a candidate for Transplant, however, I am not convinced that chemo does not work on this cancer (especially getting hooked up with this wesbite). Mark’s location of the cancer (inside the liver substance and not in the bile ducts) is what our docs are saying is making this different. It is also why they say he is a candidate for cryosurgery. However, I need more info, especially to decide if this surgeon is the one to do the surgery. I have learned they are doing MRI guided cryosurgery, and having better success, so if we decide to go that route, I may wany to find a place doing the MRI guided surgery. We have not actually gone to Mayo Clinic for a transplant evaluation, however, our surgeon was suggesting we go there, but offered to”call ahead and talk with specialists”. After talking with specialists at Mayo, our surgeon said Mayo said he is definately not a candidate for transplant. Here is some info on crysurgery.

    Cryosurgery from livercancer.org website:

    “Cryosurgery is a new technique that can destroy tumors in a variety of sites (brain, breast, kidney, prostate, liver). Cryosurgery is the destruction of abnormal tissue using sub-zero temperatures. The tumor is not removed and the destroyed cancer is left to be reabsorbed by the body. Initial results in properly selected patients with unresectable liver tumors are equivalent to those of resection.

    Cryosurgery involves the placement of a stainless steel probe into the center of the tumor. Liquid nitrogen is circulated through the end of this device. A picture of the cryoprobe is shown.

    The tumor and a half inch margin of normal liver are frozen to -190

    #14107
    edith
    Member

    Kathy,

    My husband was diagnosed with CC last Oct. ’05. I very much agree with Stacie on Chemotheraphy before clinical trials. He was given chemo treatments at the end of Oct. through December which stabilized the disease and then it stopped working! We were supposed to go to a clinical trial at the National Health Institute for Sorafenib/Avastin study in February but there was no safe tumor that could be biopsied. I was somewhat relieved that we didn’t make it because of the intensity of treatment and schedule. Within 2 months, the patient on study would have 4 liver biopsies, countless blood drawing, staying at the hospital overnight every 2 weeks, MRI and PET scans. NIH gave us an option of waiting for the next study in May of the same drugs that doesn’t need liver biopsy but I didn’t want for my husband to wait that long without any treatments. If you want to call NIH for the study next month, the Study Coordinator is Virginia Kwitkowski, # 301-402-5640. You would get in easier if your Oncologist would make the referral as to our experienced.

    This website has given me a lot of information on different protocols. When we went back to the National Naval Hospital in Bethesda, Maryland where my husband is being treated to discuss our options, I was armed with all kinds of information that I learned from this site. My husband is now on Xeloda/Gemcitabine/ Taxotere. He is tolerating this better than his first treatment.

    Good luck and my best regards!

    Edith
    Annapolis, Maryland

    #14106
    stacie
    Member

    Kathy,

    The surgeons are probably right. If they have told you he is not a candidate for surgery or transplant. But the oncologist is wrong. Chemotherapy does work for many on this cancer. There are several here who are out beyond two years with the help of chemotherapy. I have personally never heard of the cryo surgery before and I’ve done hundreds of hours of research on cholangiocarcinoma, so I would be very interested on any information you can give the rest of us. Where do they do this type of surgery and who does it?

    There are several clinical trials. You’ve probably seen Soraphenib mentioned, but it has not been successful with several of the patients here. There are a lot of chemo options to try, I would certainly try chemo before I went in to a clinical trial (personal opinion) because you’ve got to get a handle on this disease quickly. If the chemo stops working later, then you can try a clinical trial.

    Be sure to put Mark’s information in the patient profiles and then you can have access to the rest of the patient information. You will find a lot of chemo options and places that have been aggressive with this disease.

    Good luck. Be sure to keep us updated.

    #14105
    evan14
    Member

    Hello Kathy;

    My wife Dawn was diagnosed with Cholangiocarcinoma (klatskin

    #107
    kathysue
    Member

    I am new to this website, and already have found it to be a great help.

    My fiance, Mark, was diagnosed with CC in January of this year (2006). The CT scan showed the cancer to be confined to the left lobe of the liver only, so they were going to remove the left lobe. However, during that surgery, two small nodules of cancer were found on the right side of the liver, so the surgery was terminated before removing the left lobe. The surgeon felt he would be a candidate for a transplant. (The nodules on the right side were removed to biopsy. We were told they were so small, and that is why they did not show up on previous CT scans.)

    Since then we have talked to liver specialists the The Medical College of WI, who told us Mark would NOT be a candidate for a transplant, due to the location of the tumor, and Mayo Clinic specialists have agreed. We went to University of WI – Madison, for a transplant evaluation, and they also said he was not eligible for a tranplant. They also gave him “no treatment options” and sent us home to “go find clinical trials to try”. We seem to be hitting brick walls constantly. Mark battled Hodgkins Disease 3 years ago, and has been in full remission. The doctors are telling us this is not related in any way to the Hodgkins, that this is Privary to the liver, and it is only because of the routine scans he has for the Hodgkins, that this CC was found. We asked Mark’s original oncologist if he knew of, or could locate any clinical trials for us to consider. His answer, “I know of nothing”. His suggestion was to check into one of the major cancer centers (MD Anderson or Dana-Farber were two he mentioned) and do what ever they say, or do nothing and enjoy life, how ever long that might be.

    Mark’s original surgeon has made some calls for us (he seems to be the only one in the medical profession not willing to give up), and now agrees that transplant is not an option in his case. His surgeon wants us to consider Cryo Surgery (freeze and burn therapy). Has anyone considered this option? We are also considering flying down to the Cancer Treatment Centers of America, but I was a little turned off with their “hard sell” on the phone. I did mail Mark’s medical records there for review. Dr. Libby suggested he keep trying for a transplant, as they felt they could not “cure” Mark, only offer “treatment options”. He said to check further into transplant and call back if we wanted more info on “treatment options”. Now that we are fairly certain that transplant is not an option, we are trying to decide between Cryo Surgery or CTCA. The surgeon did say that Cryo surgery will not be a guarantee that it won’t return, and he may need to have this therapy done again in the future. Any comments? I can’t believe this is all thrown on our shoulders to do the research and find out where to go or what to do. His ocologist says “chemo doesn’t work on this cancer” so there is nothing I can do for you.

    Mark had a PET scan Friday, to see if the cancer is still confined to the liver and we meet with his surgeon on Wed. for the results and to get more info on the cryo surgery. The scans in Jan show 90% of his liver to still be in great shape, and we’ve been encouraged that this has been caught very early.

    Marks feels fine, physically, just emotionally drained. Thanks in advance for any comments.

    Kathy
    Wisconsin

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