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    Looking for any input: Cytoxan Decision

    Hey all,

    Am faced with a great big decision and am looking for input. Have had MS since probably 1996, dx 2004, and since then it seems to be SPMS. Have been on Copaxone, Avonex, then back on Copaxone. Have had times off all therapy. Solumedrol treatments do not work for me, just finished 4 days in early January. All I got was pain and heartburn.

    In the past few months have been having an increase in swallowing problems, this only used to happen when overheated. Now, it's all the time. This has been confirmed by XRay and speech therapy swallowing studies. There is no question there is a problem.

    The neuro has attributed this progression of this symptom to an impressive lesion on my brain stem (you know, the place where all autonomic stuff begins?).

    Due to the location of the lesion and this progression, the neuro (at Partners MS Center in Boston) has recommended Cytoxan treatments of 1/month for at least a year to work to halt this lesion where it is. She has offered other therapies, such as Cell Cept with Copaxone. I cannot take Tysabri (JC Virus) or Gilenya (on beta blocker) and those would be iffy anyway due to my progressive nature.

    I am leaning towards going onto Cytoxan, as I think this swallowing problem is simply the tip of the iceberg if we start considering all this lesion could do, and because Cytoxan seems to be most effective in progressive forms.

    I would appreciate any input people may have.

    Have to add, that when diagnosed with MS, I think the first thing that came to my mind was "oh no a wheelchair someday." Huh, silly me, if I only knew then what I knew now, that wheelchair wouldn't look so bad.

    #2
    There are two pertinent questions: What may happen if you go on Cytoxan, and what may happen if you don't go on Cytoxan? It sounds like you've considered all of the critical information and summed up the situation very nicely yourself:
    "I think this swallowing problem is simply the tip of the iceberg if we start considering all this lesion could do, and because Cytoxan seems to be most effective in progressive forms."

    I think that pretty much covers it. Put my checkmark in the Cytoxan column.

    Comment


      #3
      Originally posted by HereIam View Post
      Hey all,

      Am faced with a great big decision and am looking for input. Have had MS since probably 1996, dx 2004, and since then it seems to be SPMS. Have been on Copaxone, Avonex, then back on Copaxone. Have had times off all therapy. Solumedrol treatments do not work for me, just finished 4 days in early January. All I got was pain and heartburn.

      In the past few months have been having an increase in swallowing problems, this only used to happen when overheated. Now, it's all the time. This has been confirmed by XRay and speech therapy swallowing studies. There is no question there is a problem.

      The neuro has attributed this progression of this symptom to an impressive lesion on my brain stem (you know, the place where all autonomic stuff begins?).

      Due to the location of the lesion and this progression, the neuro (at Partners MS Center in Boston) has recommended Cytoxan treatments of 1/month for at least a year to work to halt this lesion where it is. She has offered other therapies, such as Cell Cept with Copaxone. I cannot take Tysabri (JC Virus) or Gilenya (on beta blocker) and those would be iffy anyway due to my progressive nature.

      I am leaning towards going onto Cytoxan, as I think this swallowing problem is simply the tip of the iceberg if we start considering all this lesion could do, and because Cytoxan seems to be most effective in progressive forms.


      I would appreciate any input people may have.

      Have to add, that when diagnosed with MS, I think the first thing that came to my mind was "oh no a wheelchair someday." Huh, silly me, if I only knew then what I knew now, that wheelchair wouldn't look so bad.
      I was very interested to read this because I am also in the process of making the decision about whether or not to start Cytoxan treatments after meeting with a neuro also at Partners MS Center in Boston. I am still in RRMS, but it has progressed since I was diagnosed in 2002. I have been on Methotrexate (when I was 1st diagnosed incorrectly with PPMS), Betaseron, IVIG, Copaxone, Copaxone with monthly pulse steroids, and Tysabri. I've been off Tysabri since August when I had a flare up, and other than a few Solu-medrol IVs that I've had for way too many flares in the last few months, I haven't had any regular treatments.

      Interested to hear more about your story and experience in Boston. I loved the doctor I saw there.

      Comment


        #4
        I was dx RR in November 2006 @ Partners, 2008 dx with Secondary, October 2011 dx with PPMS @ Mass. General. Have been on Avonex, Methotrexate, Cytoxan (last year) with no improvement, and I still progressed. I had two infusions of Rituxan last month and feel a little better. The spasms and neuropathy aren't as bad. I can only wait and see if it works with progression, but so far Rituxan is the only treatment that has made me feel a little better. Hope this helps, but as we all know, everyone is different and people respond differently to treatment.

        I didn't have any side effects with Cytoxan at all.

        Comment


          #5
          Thank you all for your input, I appreciate it. I think that Redwings sums it up nicely, that we may be at the point where there is no choice.

          Don't worry, Sparky, this decision will be made by my neuro and me, working together. There are MRI's to be done, and other ideas tossed around. We aren't even close to a final decision, this is a decision that will be handled with the respect it deserves.

          I mainly was looking for food for thought from anyone else that may have been in this same position.

          Comment


            #6
            Cytoxan

            I have been on cytoxan for three months now -this after only 8 months since my diagnosis. It's done once a month and it"s not too bad. They pump you up with the solumedrol prior to the chemo so you're all hopped up and usually feel good for the remainder of the day - eating everything in the house that's not moving. The next couple of days there's a marked lack of appetite, but it's just temporary. I get a little heartburn and I still have my hair. SO it's not going too badly.

            Comment


              #7
              Thank you for sharing your experience, I appreciate it. My first infusion is scheduled for April 9, I'll let you know how it goes. We are fighting many fires, with MS affecting my pulmonary muscles, swallowing reflex and tongue movements. This is tough and we need to stop it now or I'm really going to be in great trouble.

              Wow they got you on Cytoxan fast, I hope that the treatments help you. Fingers crossed!

              Comment


                #8
                first shot

                Had my first shot and it was great. Just a little burn so I will make some adjustments tonight with my needle debth.ai
                limbo land for 1 year and 4 months DX February 2012 Copaxon February 2012 for 6 months. No DMD's since.

                Comment


                  #9
                  It is tysabri first or tysabri never more as an option for you...

                  you limit you treatment options by doing cytoxin first...not bright.

                  only 2 people have gotten pml within the first year of using tysabri. the first person was a 65 year old gentleman in poor health who was using tysabri for the treatment of crohns disease. he was in poor health. had use multiple immune suppressants in the past. he got pml 8 months after starting tysabri.

                  the 2nd was a young gentleman in his 20's who had a very aggressive ms. first his doc started an immune suppressant to try to slow it down. then stopped that and switched him to tysabri..he got pml in 6 months.

                  i posted about the occurrence in the tysabri group. i will find it and put a link to it. i can't remember off hand which immune suppressant he used before switching to tysabri as his next medicine....

                  it does not matter if your jcv+ in that first year. this is such an easy decision. use tysabri for a year then switch to cytoxin.

                  http://www.msworld.org/forum/showthread.php?t=115918

                  It was Azathioprine. he had low cd4+ T cells so that too can be monitored during the infusions.


                  cd4 count is an indication of the strength of the immune system. a weaker immune system a lower probabilty of surviving or have less disability follwing an episode of PML if it happens. isn't a predictor of pml that is starting.

                  http://aids.about.com/od/technicalquestions/f/cd4.htm

                  Because of the person who got pml while using tysabri for the treatment of crohns(only approved to treat that in the US nowhere else)..crohns has its own Touch monitoring program while using tysabri.

                  in the crohns Tysabri monitoring program a person gets a colonoscopy at the start of treatment to determine how significant the lesions are. then after 6 months they get a 2nd colonoscopy to determine if there has been any improvement in the lesions after 6 months of tysabri, if no improvemen they have to stop at that time..

                  with the MS they give more time to show improvement-its a decision of the doc and patient how long to wait for improvement--but you can use the crohn monitoring and give it just 6 months to demonstrate improvement if not go on to cytoxin at that time.

                  its 6 months of ms treatment--in a life of having to always find treatments for ms.
                  xxxxxxxxxxx

                  Comment


                    #10
                    Solumedrol treatments do not work for me, just finished 4 days in early January. All I got was pain and heartburn.
                    has your doc tried Actar gel? i have talked to some old timers before steroids were used and they have said this was som effective stuff...

                    also notice an uptic on this med for the treatment of other things..

                    http://www.nationalmssociety.org/abo...ons/index.aspx

                    well you can google it just as well as i can, its frustrating that i can't find the recent article i read about it in the news? frustrating i'm not sure what recent is to me any more. could have been longer than i think?
                    xxxxxxxxxxx

                    Comment


                      #11
                      This kind of decision is a rather common decision people are presented with when given an option to use tysabri and one young lady explained how she made her decision..........

                      with tysabri i might get the side affects..
                      with a cytoxin i will get the side affects.

                      tysabri might stop the progression
                      cytoxin might stop the progression.
                      xxxxxxxxxxx

                      Comment


                        #12
                        Thank you for all of your input, 04, I appreciate the time it took for you to share your knowledge.

                        I'm afraid that I'm in a position where there is no choice. I have a progressive form of MS and it's hitting in places that are pretty darn serious--breathing, swallowing, talking, and pretty much everything else that uses those upper chest muscles to operate.

                        I was on Tysabri for a year before the JC virus testing was done, and during that year I experienced progression. I have been on Avonex and Copaxone also.

                        Most of the treatments available are for RRMS, the options for progressive disease are few and often are bug guns. I realize there are no guarantees with any treatment, but this is the one that we think will be the most likely one to keep me safe. Yes, I know it's not going to be a pleasant time. However, life is already pretty darn rough with the symptoms I've accumulated very rapidly.

                        As for your statement you limit you treatment options by doing cytoxin first...not bright. .... well, I'll not respond in detail to that but really..... let's choose our words more carefully.

                        Comment


                          #13
                          Originally posted by HereIam View Post
                          I'm afraid that I'm in a position where there is no choice. I have a progressive form of MS and it's hitting in places that are pretty darn serious--breathing, swallowing, talking, and pretty much everything else that uses those upper chest muscles to operate. ... Yes, I know it's not going to be a pleasant time. However, life is already pretty darn rough with the symptoms I've accumulated very rapidly.
                          Hi HereIam:

                          Maybe my opinion comes from a viewpoint that a lot of folks with MS don't have. I have NMO, and NMO kills people.

                          It's apparent you've given this a lot of thought, from a position a lot of people with MS aren't in and don't quite grasp the severity of. I'm of the same opinion I was two weeks ago:

                          It sounds like you've got it covered.

                          Comment


                            #14
                            Thank you for your kind understanding and support, Redwings. In all of your posts, you are kind and measured and wise. I am glad that you are here.

                            You and I are in disease situations that can kill us, and so the treatments we may face do not apply to all. And, we face them because we have no choice.

                            Cytoxan may not stop this progression, and if it doesn't, then I will move on to the next big gun in the line up.

                            To others who read this---please know that "my MS" is not a typical course of the disease. I don't want new members to read my experience and think this is where you are headed, because you are not. As you read posts on this board, you'll see that there are very few that have autonomic dysfunction from this disease.

                            I am very special, as is Redwings.

                            Comment


                              #15
                              HereIAm: You are absolutely making the right decision. You need this treatment and you need it now. And you cannot be in better hands than at Partners at Brigham in Boston. Good luck and let us know how it works out. (I didn't get any side effects from Cytoxan, don't worry). Nora

                              Comment

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