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  • in reply to: European CC community – Please help #14945
    sara
    Member

    Maggie –

    I am so sorry to hear of the news about your mom.

    My good friend did oxaliplatin, and later added in the 5-FU. The oxaliplatin was actually the first chemo she was given, and she achieved mild shrinkage from it. (It shrunk her large tumor by 17%) It did decrease the pain substantially. It also has some different side effects – most notibly the increased sensitivity to cold. It’s also known for decreasing the feeling in your extremities (impacting finger dexterity), and I believe this side effect can be permanent. She didn’t do the 5FU for very long, so I cannot really comment on it. But there are many others on here who have included it in their chemo regime.

    Whether or not to head down this road is a personal question. The reality is that it’s not a cure. These drugs may help by slowing the tumor growth, thereby cutting down on the tumor pain and possibly giving your mom more time. The effectiveness of the drugs seems to vary greatly across all patients. Your mom may tolerate the side effects very well, or they could make her quality of life decrease significantly. I wish I could give you a clear answer on this, but unfortunately there is no clarity with this cancer. All I can say is that towards the end, my dear friend was so weak that her last chemo treatment almost took her from us. After her two week stay in the hospital, she opted to stop the chemo and try and enjoy what little time she had left. It’s a balancing act.

    Please know that we are all thinking of you and your mom.

    in reply to: Hello to all my name is Celia, #14973
    sara
    Member

    Welcome, Celia. I’m glad you found this board. I will echo Mary’s sentiments – you need to get a second/third/fourth opinion. At the risk of sounding flippant: This is not breast cancer. There is no established protocol on attacking the cancer with chemo/radiation. Consequently, not just any oncologist can treat it. You need to get your husband to a hospital where the oncologist sees hundreds of CC cases, rather than just a few cases. And while these highly specialized oncologists may not be able to provide a cure, they are knowledgeable about the cutting edge of treatment options (and are probably even heading up the research). The big hospital names in the US are MD Anderson (Houston, TX), Sloane Kettering (New York, NY), and Mayo (Rochester, MN). There are other great doctors at various hospitals around the country, but these are the big hospitals. I would definitely seek more opinions from at least one of these hospitals.

    in reply to: Gemcitabine with 5-FU Push #14822
    sara
    Member

    Kris – Two of the other big name cancer centers (besides Mayo) are MD Anderson in Houston, Texas, and Sloane Kettering in New York. These places often quarterback your treatment at your home hospital, or just offer second/third/fourth opinions.

    in reply to: Seeking Any Advice #14862
    sara
    Member

    jmoneypenny – I highly recommend you change oncologists if your mom is not happy with the current doctor. This is a team effort, and y’all should definitely be on board with everyone in your team. And this should be an “easy” switch because you have Sloane Kettering in New York – I guarantee there will be at least one doctor focused on CC there.

    This is a scary cancer, and it’s so important to find the right oncologist to guide you through the treatment options, both physically and mentally. Not all doctors work for all patients. Dr. Hochster may be a great option for some, but is obviously not working for you. It is ok to switch.

    in reply to: European CC community – Please help #14938
    sara
    Member

    Maggie – I am also very sorry to hear about your mom. I hope you are successful in finding a route to have the tumor removed.

    I echo both marions and stacie – Prof. Lodge is the doctor in the UK who has performed several surgeries on the liver when other doctors refused to operate. I know I’ve read posts on here indicating that he’s had protal vein involvement in the past, and has proceeded to move forward in operating.

    As far as bringing a patient into the US for treatment – this is done regularly, especially at the top cancer centers. Try contacting admissions at these hospitals (MD Anderson – Houston, TX, Sloane Kettering – New York, NY, and Mayo Clinic – Rochester, MN). I imagine that they will be a big help regarding the process.

    in reply to: Mother stage 4, no blockage or jaundice – any others? #14201
    sara
    Member

    I am glad you found this board, although I will echo Peter’s statement that I’m sorry that you had to find the board.

    My friend didn’t have any stents placed in the ducts to help open them up. I don’t know if it’s because she had intrahepatic bile duct cancer or not. But I did notice that she started to appear a bit jaundiced towards the end. (in the last 3 months)

    For the following information, please keep in mind that I have ZERO medical training. This is just what I picked up along the way during my friend’s fight. There’s probably some truths intermixed with some erroneous information. I imagine the best policy is to remain silent, but I remember the helplessness feeling of just wondering “when.” so, I ‘ll take my best stab: Is she retaining fluid in her abdomen? If so, then she has ascites. I cannot tell for certain, but your original post seems to imply that the doctors said she does not have ascites. Obviously they should know better than anyone on this board. However, if the doctors just haven’t said that word yet, there are some signs you can look for. If they prescribe a diuretic, or they are draining fluid from the abdomen, she likely has ascites. If the diuretics work on relieving the swelling, then she’s not as far along. (relatively speaking…maybe several months) However, if the doctors have started draining the fluid regularly, you’re probably looking at weeks. If the swelling is not fluid induced, then I imagine the swelling is coming from the swollen liver, which will grow to compensate for the reduced operating capacity. And I’d guess that you’d be looking at many months in this scenario.

    Your mom, you, and your entire family is in my thoughts and prayers.

    in reply to: Mets to bones #14894
    sara
    Member

    I think Caroline Stoufer has mets to the bones. Check out her blog.

    in reply to: My Brothers #14886
    sara
    Member

    Lisa,

    I am saddened to hear about your brothers. I cannot imagine losing two loved ones so close together.

    I am curious – I recall reading earlier that one brother was diagnosed with cc, and the other with pancreatic cancer. Did they change the diagnosis on your brother with pancreatic cancer?? This is so bizzarre to hear that two people in the same family have this cancer.

    My best to you.

    in reply to: Tarceva #14812
    sara
    Member

    Ditto marions’ suggestion. I highly recommend second, third, and even fourth opinions. There is no established course of treatment here, and you’re ultimately in control. It’s best to have an abundance of information so you can make an informed decision. Some surgeons will shy away from operating, while others will proceed. It’s worth looking into further. Your current surgeon may very well be correct, but something this rare warrants multiple consults.

    in reply to: Persistent Cough #14841
    sara
    Member

    Barbara – My friend Kelly experienced very similar symptoms and it turned out being the port. I seem to recall there being a leak (maybe something had disconnected) which made her very ill and vomitting all the time. She was also coughing, but I can’t remember the exact details. There was something else going on when she raised her arms, and/or tilted her head back, but I cannot recall exactly what it was. I’ll go read her blog to see if I can find it. (the Lester blog on here) I would follow up on this, as it took her doctors a week to figure it out. For whatever reason, the doctors didn’t seem very focused in on the port as a possible source.

    I am sorry I cannot provide more definitive information. The happened to her not too long after having the port installed, and so much has transpired since then. If I find an entry in her blog referencing this, I will post the information on here.

    in reply to: We have had no time! #14613
    sara
    Member

    The human will is amazing, and I would always give it credit to overcome great obstacles. That being said, your father’s symptoms are very severe. Instead of focusing on a date that you wish to reach, just focus on spending as much quality time with your father. If you focus too much on the ticking clock, it will shadow your final time with him. Just love him and support him in whatever direction he takes.

    in reply to: New diagnosis #14598
    sara
    Member

    Irene – Stacie posted some very good information. I really hope that your husband will seek second and third opinions before taking the next step. This cancer is very rare, which means that there is not a large number of cases to warrant extensive research. Therefore, you’ll find that there isn’t really a prescribed course of treatment. Check out the blogs on here – the posters are taking different chemos, in different orders. What is extremely important is the decision on the first chemo. (should you elect to go that direction) The tumor cells are still virgin to chemotherapy, so you want to make sure you hit them with the most effective cocktail – and that decision requires an expert oncologist in cholangio.

    I highly encourage y’all to speak with the experts at the major cancer centers. Sloane Kettering, MD Anderson, Mayo, etc – they are filled with the “top” oncologists and surgeons from all over the world. They deal with many cases of cholangio and they are better positioned to offer more options to your husband. As Stacie indicated, these doctors are on the forefront of research, and are privy to much more information than your husband’s current doctor. At a minimum, you must talk to an oncologist. Chemotherapy can be a great tool – not just for extending your husband’s life, but also managing the pain.

    If you do elect to receive more opinions, and since you may have your first visit with an oncologist at one of these hospitals, start the necessary paperwork at the cancer centers immediately. At least at MD Anderson, you’ll discover there is a fair amount of red tape to wade through just to see a doctor. Mayo is much faster, but still requires work. I don’t have personal experience at Sloane Kettering, but I bet several others here could tell you.

    My best to you, your husband, and your family. I wish you didn’t have to visit this site. I wish none of us did. (but many thanks to team Clements for getting it up and running)

    in reply to: Hi #14536
    sara
    Member

    Mr. Goodbar,

    Dr. Gores runs the liver transplant program for cc, and is the doctor at Mayo to see regarding this course of treatment. From what I understand about the program, it is directed towards cc patients with early discovery, and may not apply to the patients that have already begun exhibiting symptoms.

    Here is the lodging information my sister passed on:

    Attached to Mayo:

    Marriott Hotel 507.280.6000
    Kahler Inn 507.281.6200

    Those are both nice hotels, but I believe the rates may be higher.

    Options near Mayo:

    Residence Inn 507.292.1400
    Courtyard by Marriott
    Executive Inn
    Hilton
    Holiday Inn Express

    She didn’t give me phone numbers for the last four hotels. She did say the same thing you said – the free lodging covered by the grant pertains to those receiving extended chemo and radiation treatments at Mayo. However, she said that you don’t necessarily need a car. There is a shuttle service (I believe called Rochester Direct) that runs between Minniapolis airport, and many stops in Rochester. (including the hotels listed, and the hospital) It is only $18 for that trip. There is also a similar shuttle service that runs between the Rochester airport, and the hotels and hospital. There is a very extensive underground tunnel system, which should allow you to walk freely among the hotels and hospital system.

    I hope that information is of help! Good luck with your dad’s appointment.

    – sara

    in reply to: Hi #14532
    sara
    Member

    Hi, Mr. Goodbar. I’m glad you found this site. Perpetual thanks go out to the tireless creators – they have done great work.

    Who are you seeing at Mayo? I know that Val McCrea had a bad experience there, but I believe Dan Peterson has had ongoing treatment, and I don’t recall reading any negativity regarding the treatment. You might want to go check out his blog (found under the General Info section) for more information, and see if you can’t contact his wife directly. I’m sure they are a wealth of information.

    My brother-in-law is an oncologist there, and he’s currently treating several cc patients. He focuses more on research of cholangio. I will ask him who he recommends you see at Mayo, if you don’t already have a doctor.

    Just from visiting there, Rochester is a fairly small town. However, I think it would be beneficial to have a car at your disposal if you’re going to be there for a week. I do know they (Mayo) have free lodging for patients receiving radiation at Mayo, but I don’t know if it’s open to anyone receiving any other treatment, or consulations from the hospital. I would contact the hospital and explore further, as it’s a potential large savings for you.

    I will keep your father in my thoughts and prayers. I will also try and get back on here soon with a doctor referral, should you need one.

    – Sara

    in reply to: INTRO: #14522
    sara
    Member

    Glad you found your way to this board – it’s a great resource.

    I would recommend that you check out the blogs, which can be found under “General Info.” The blogs should give you an idea of the process – both good and bad.

    You indicated that your son will start chemo. Because there is no established course of chemotherapy for cholangiocarcinoma, it’s a good idea to get a few more opinions. This way your son will have plenty of information to base his treatment upon. Don’t ever let him forget that his treatment is in his hands. The doctors are there to provide guidance, but your son holds ultimate control over his treatment.

    I would also recommend contacting the Lester’s. They are in Houston, and Kelly is getting treated at MD Anderson. They may be able to pass on some useful advice. You can find their blog under the General Info section.

    I’m sorry that your son is going through this. He will be added to my ever-growing prayer list.

Viewing 15 posts - 166 through 180 (of 185 total)