violarob

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  • in reply to: Insurance Driving Me Nuts! #24208
    violarob
    Member

    Insurance battles really stink!

    Regarding the whole issue of PET scans: My oncologist at MD Anderson prefers CT scans with iodine contrast rather than PET scans. He says he gets better visualization with the CT scans, especially when they are viewed in series over a period of time for comparison to look for shrinkage and other changes.

    However, that is just his experience and preference. YOU should be getting the care you feel you need/deserve. Keep us posted on how things are going.

    Violarob in Texas

    violarob
    Member

    Dear Gale:

    Please see my posting under “radiation” on this web site. It may contain information you would like to share with your surgeon regarding your insurance battles.

    Violarob in Texas

    in reply to: Radiofrequency Ablation is in the cards for Gale918 #24061
    violarob
    Member

    Dear Gale:

    Here is something to think about: When I had my radiofrequency ablation, I was surprised to discover on the day I was admitted that I was on the surgical schedule for a “liver resection”. When I asked the surgeon about this, he said “don’t worry; we are going to do RFA”. Interestingly, all my medical records say “resection”, and the hospital bill and insurance claim both said “resection”. Virtually all insurance companies will pay for a resection. I had no trouble getting my procedure approved and paid for by the insurance company.

    I would not want to use this forum to advocate anything shady or illegal, but perhaps you might share this story with your surgeon. It might give him some very creative ideas….

    Violarob in Texas

    in reply to: Anyone tested for Tarceva sensitivity? #25136
    violarob
    Member

    Dear Alex: Funny you should mention this test. I was being treated with Tarceva until October, but took a break in order to prepare for surgery (see my post elsewhere on this site). Now that I am recovered from surgery, my doc is thinking of starting the Tarceva again, but mentioned that he wants to do a test for sensitivity to see if it is appropriate to resume this therapy. I don’t know the details of the test, but I will try to find out next week. I am being treated at MD Anderson Cancer Center. I’ll post any information I am able to get from the doc. If you find out anything, please post your findings!

    Violarob in Texas

    in reply to: newly diagnosed with cc #24560
    violarob
    Member

    Dear Vincent: You are doing the right things, being very aggressive and not taking “no” for an answer. If your mom has only a single tumor 5 cm in diameter, that is definitely treatable. Don’t let them tell you that chemotherapy “doesn’t work”. I had chemotherapy with excellent results. The standard combination these days is Gemzar (gemcitabine) in combination with either cisplatin or oxyliplatin (sp?). Oral drugs are often added to this regimen, like Tarceva or Xeloda. If Cyberknife or Theraspheres are not an option, there are ablation therapies like radiofrequency ablation and ethanol ablation. Ablation can do major damage to the tumor without resection or major surgery.

    Unfortunately, the leading hospitals for treatment of CC are not near to you. They would be MD Anderson in Houston, Mayo Clinic in Minnesota, Sloan-Kettering in NY, University of Pittsburgh Medical Center, and Cancer Treatment Center of America in OK. Having Medicare/Medicaid as her insurance may limit treatment options or hospitals, but I have no experience with that.

    Explore this web site. There are dozens and dozens of stories of different kinds of treatments. Good luck to you! We will all do what we can to help.

    Violarob in Texas

    in reply to: Violarob in Texas: one-year update #25002
    violarob
    Member
    marions wrote:
    Vilarob…..”cancer free” is the magic word we are looking for. Thank you for sharing with us and allowing us to see first-hand that diligence and the pure act of being pro-active can bring about these incredible changes. I am hoping for you to continue to share with us.
    Marion

    Hi, Marion!

    Well, “cancer-free” is kind of misleading I suppose. As most of you know, cholangio and its cousins have a way of coming back even after successful resections. However, the use of drugs like gemcitabine, erlotinib (Tarceva) and bevacizumab (Avastin) has shown that you can greatly reduce and delay the return of disease after resection or radiofrequency ablation by many months, or even years. I will be the living guinea pig! I will keep you guys posted on my progress. I promise to stay in touch; it is the sharing of information which helps us all so much.

    Violarob

    in reply to: Violarob in Texas: one-year update #25001
    violarob
    Member
    JeffG wrote:
    Violarob in Texas… Glad to to hear your excellent come back. I wish I could say the same. Still taking Tarceva dispite the warnings as I feel it is doing me some good. Just got to stop all of these darn ribs from fracturing. Hurts just a little .Takes about three days of liquid morhine to kill the pain. I still remain hopeful this cancer feeding frenzy will stop. I’m doing a chest wrap to help with pain and hopefully allow healing we’ll see. Who knows for sure what coarse will be steered. Wish you the best.
    Jeff

    Dear Jeff: Tarceva takes time to work. If it is not making you sick or feel bad, stick with it and see if you can reap some benefit from it. I hope you get relief soon from your rib pain. Bless you, you have been a big inspiration to me this past year in all my struggles!

    in reply to: Violarob in Texas: one-year update #25000
    violarob
    Member
    Lainy wrote:
    WOW! What a story! Good for you and this is the kind of news we love to hear. Another Christmas Miracle! Although one you worked extremely hard at. Question: Our son-in-law has Hepatitis C. Can that also beget CC? 2nd question: Do you play the Viola?

    Dear Lainy: Yes, hepatitis C is know to cause several types of liver cancer, especially in the presence of cirrhosis. There are plenty of web sites which discuss this link. Try doing a search at http://www.medscape.com

    And yes, I do play the viola! I am in the orchestra at the Wortham Theater Center in Houston, TX, where I perform for Houston Ballet and Houston Grand Opera.

    in reply to: Gemcitabine + Xeloda #23370
    violarob
    Member

    Dear Robyn: I hope your mom is doing well on her new chemo regimen. I also am being treated at the MD Anderson GI clinic, by Dr. Javle. (I wonder if you are being treated by Dr. Javle or Dr. Kaseb?)

    Anyway, I am about the same age as your mom, and I have been at MD Anderson for about 8 months now. I am doing really, really well! Good luck to you, and keep us posted on your progress. I hope your experience at MD Anderson will be as positive as mine has been.

    Violarob in Texas

    in reply to: Gemcitabine or Doxorubicin #24993
    violarob
    Member

    How would the doxorubicin be administered? by infusion in the arm, hepatic artierial infusion or chemoembolization? These 3 methods are very different as to side effects and effectiveness of treatment. Doxorubicin is a very rough drug, and is not particularly effective for cholangio. Gemzar is more effective but is used more as a stabilizing drug rather than a tumor-shrinking drug.

    With a tumor that large, I am surprised they are not recommending some kind of resection or ablation to reduce the size before initiating a chemo regimen.

    I am not a doctor, so get lots of opinions! Good luck, and keep us posted on your progress.

    Violarob in Texas

    in reply to: Chemoembolization #24422
    violarob
    Member

    Howdy everyone: I had chemoembolization (with doxorubicin) performed as first-line treatment after my diagnosis. Some people sail right through this procedure with few problems, but for me it was VERY painful. Also, I did not get much benefit from the treatment. During the chemoembolization, they did a hepatic arteriogram, which is standard practice so they can see exactly where to inject the embolizing material. While viewing the arteriogram, they could see for the first time several other lesions not diagnosed previously. These additional lesions could not be treated with chemoembolization. Long story short, they could only treat one tumor out of the 7 visualized on the arteriogram. (This episode was followed by another loooong story, which I will post elsewhere on this site. I eventually received appropriate successful treatment, and am now cancer-free for the time being).

    According to info from my oncologist and my own research, chemoembolization is only effective for treating 1 or 2 tumors, and they should be less than 5 cm in diameter. In addition, only 50% of those treated will have a positive effect. Rarely are the tumors destroyed; usually, they are either stabilized or cause some shrinkage. It is considered palliative, not curative.

    Violarob in Texas

    in reply to: PET vs CT Scan #25118
    violarob
    Member

    Howdy: I asked my oncologist at MD Anderson about PET scans. He does not use them, saying that they are unreliable and sometimes misleading when used to visualize cholangiocarcinoma or mixed tumors. He says you get a much clearer picture from CT scans and intraoperative ultrasound. I don’t know if that is a universal opinion, but that seems to be the prevailing attitude at MD Anderson.

    Violarob in Texas

    violarob
    Member

    When I first went to see my oncologist at MD Anderson, I asked him about Nexavar (sorafenib). He said that some patients have good response with it if they have regular HCC, but he says he has not had good luck with it on his cholangio patients. His preferred regimen for CC is daily tarceva with periodic infusions of gemcitabine and cisplatin. I do not personally know of anyone taking sorafenib for CC.

    Violarob in Texas

    in reply to: SIRT – Y90 #17822
    violarob
    Member

    Have you tried contacting the company which developed the SIRT-Y90 microspheres? I think they have a new patient advocacy web site. You might be able to network with some folks there. Best of luck!

    Violarob in Texas

    in reply to: Low platelets #23415
    violarob
    Member

    Platelet counts are always a big bugaboo with gemcitabine-based chemotherapy regimens. Lots of different “cocktails” being taken by our pals in this discussion group; gem alone, gem+cisplatin, gem+xeloda, gem+oxiloplatin, etc. There is a wide variation of dosing schedules too. Some have infusions every week, some every 2 weeks, some every 3 weeks.

    I have had trouble with platelets too. I have cirrhosis and chronic hep B infection (which is controlled with Hepsera). My “normal” platelet count is around 100k. Regular normal is 150k-350k. After infusion I fall to around 50-60k and climb back up over 3 weeks. They originally wanted me to be on a two-week schedule, but the platelets would not cooperate. However, I am doing very well on the 3-week schedule, so it is not a big deal.

    Chemo regimens are trial and error. There will be lots of adjustments to dosage and timing until they determine what works best for you personally. So don’t lose heart if you don’t fit into the “standard” plan. It is disconcerting the first couple of times that they pull the rug out from under you and delay treatment. It is not “bad” or “wrong”, just part of the process of figuring out what is best for you. Good luck to you!

    Violarob in Texas

Viewing 15 posts - 31 through 45 (of 72 total)
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