User Tag List

Likes Likes:  0
Results 1 to 4 of 4

Thread: What to expect?

  1. #1
    Join Date
    May 2015
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default What to expect?

    So, this is very new to me. Just diagnosed this week and have an appointment set up to discuss treatment Tuesday. As I'm sure you all went through, I'm very "in the dark" about all of this and really want to find out what to expect. I essentially had issues with sinus which lead to multiple tests and eventually a biopsy of my nasal area which brought me to the diagnosis. So, what's next? My doctor mentioned Rituxan and that I would need one treatment per week for four weeks. He also mentioned another drug (can't remember the name of that) but it was in pill form and was more of a long term treatment (18-24 months). However, he said it had a high risk of bladder cancer so in my mind I wrote that one off immediately. But, now that I have been diagnosed I'm curious what other treatments are available and common. I know everyone is at a different level and for me, I believe it was discovered pretty quickly so I'm wondering if Rituxan is the best course of action and if 4 weeks would be enough. Is there another course of treatment I should be asking about? I'm not asking for medical advice rather, the experiences the rest of you have had when initially diagnosed. I have really good doctors on this one and I feel very comfortable in their abilities however it would be good to have some questions to ask when I visit them Tuesday.

  2. #2
    Join Date
    Mar 2012
    Location
    Suburban Columbus, Ohio, USA
    Posts
    2,188
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    Hi again, Randy!

    The other drug your doc mentioned that might cause bladder cancer is cyclophosphamide, aka cytoxan. I was on it for 16 months. The key to taking Cytoxan is to stay well hydrated and urinate when the urge occurs rather than holding it. This reduces the time that the metabolites of cytoxan are in your body.

    Rituxin has fewer side effects. I had minor fatigue the day after my infusions, but nothing that slowed me down. Rituxin is very expensive. When I had mine, the list price at OSU was almost $20k each! Fortunately, my cost was $20 for my co-pay. You'll need to get authorization from your health insurer.

    I'm on methotrexate now. It's a bit hard on the liver, so I've just about given up alcohol. Other drugs used as immunosuppressants are Azathioprine (immuran) and cellcept. All of these drugs are usually used as maintenance drugs to sustain remission.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  3. #3
    Join Date
    May 2015
    Posts
    5
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default

    Yea, I have seen that Rituxan is quite expensive but hopefully my insurance will cover it. My doctor already put in for the approval about 2 weeks prior to my biopsy so hopefully that all gets approved.

  4. #4
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,944
    Post Thanks / Like
    Mentioned
    12 Post(s)
    Tagged
    0 Thread(s)

    Default

    I did well on Cytoxan, in pill form, which is said to act a little faster than RTX for most people. It was a simpler and more direct approach. I think 18-24 months is kind of a long estimate, though, and these days, they are more hesitant to keep people on it that long, nor is it always necessary. I think I was on it about a year and could have been taken off it sooner. I've heard of people going into remission with it after 3-6 months. Then, they are usually put on a "maintenance" drug, like methotrexate, which Pete and I are both on now. And prednisone is always there as part of the treatment, often along with Bactrim, which protects the lungs from infection and may have other benefits as well. There seems to be variety in how people do on RTX, but most seem quite happy with it. But it seems to me that a lot of people need more than the initial treatment series and end up getting additional treatments later to keep from flaring. Also, it may be used along with one of the other immunosuppressants already mentioned here. All the ins and outs of various treatments may be a good reason to consult with someone at the CC, as they are very experienced in using these drugs, especially compared to most people's local docs. But I would not scratch CTX off your list, and if you take it, do as Pete said and drink lots of water, and try not to be on it for nearly as long as what your doc estimated. And you can always change your original treatment plan later. Good luck, and let us know what happens!
    Anne, dx'ed April 2011

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •