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HSCT vs SCT vs Lemtrada

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    HSCT vs SCT vs Lemtrada

    Lemtrada is soon to be available to the public. What are your thoughts? Would you prefer to get HSCT, SCT or Lemtrada?
    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

    #2
    Are you sure about Lemtrada? It wasn't approved by the FDA back in December. My doctor said it was on appeal but didn't know how long that would take. He wants to get me off of tysabri since I am JV+ to start Lemtrada, it looked very promising to me.

    I think that would be a good drug for me, fingers x that we can have the opportunity to get Lemtrada. This will be very good news!!!

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      #3
      It was offered to me and another man here in Colorado last week. I don't know much about the drug except it's a chemo drug that has many serious side effects but apparently they feel it might do the same thing as these SCT. If anyone here knows more please post.
      Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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        #4
        Hello Katje, My Ms Specialist was involved in this study and is very excited about this drug. He was expecting it to be approved and had me scheduled to start on it this month, however the FDA did not approve it this past December.

        Yes it does have side effects, he explained those to me. I won't go into the side effects, I recommend that you research this drug and the test results very carefully and talk to your dr. about it.

        My situation is the urgent need to find another drug to get me off Tysabri since I am JCV+ with a very high index number and to avoid the "rebound affect" which I think I am more afraid of then the risk of PML.

        I am not a doctor and I would never give medical advice to anyone, these are just my own personal reasons why I would take this drug.

        1. I'm between a rock and hard place with the Tysabri situation, either way scares me. I don't want to go back to the way I was before tysabri. This drug looks the most promising to me of anything else out there.

        2. My Dr. told me the results of the studies and it sounded very good and I trust him. The few people that have posted or have blogs seem to be very happy with it and had very good results.

        3. The administration of the drug sounds pretty good. One week infusions everyday for 5 days then in one year 3 days of infusions and then very possible no more for the rest of your life. Granted the process isn't a picnic but neither is anything else with disease.

        4. My Dr. said it is like rebooting your immune system. That sounds very promising to me.

        5. No more monthly or bi-monthly IV's.

        Those are my reasons why I would take this drug.

        However, to answer you question about advice on which to do, Lemtrada or SCT? I don't know what I would do if I was you. I would feel that the SCT would be such a great opportunity, but I have not researched the results that thoroughly. I think I would devote as much time as possible in researching each therapy and with the advice of your doctor, your spouse and/or loved ones I would then make the best possible decision for me. That's really all you can do.

        Good luck to you and with whatever therapy you decide to go with, we are all rooting for you here. Please keep us updated, I am very interested in following your story. My email address is posted in my profile if you would like to contact me directly.

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          #5
          I forgot to ask, do you know if he is planning on prescribing the Lemtrada "off label" which is Campath?

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            #6
            I don't know. It's through the Rocky Mountain MS center. They also said I could receive HSCT treatment at the cancer center here in Denver. Someone was supposed to call me to discuss my options.
            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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              #7
              Please let us know what you decide! Good luck!

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                #8
                I go in Thursday at 9. I can have the myeloablative HCST here in denver, Dr. Burt does the non myeloablative. Myeloblative has a 100 percent success rate, non myeloablative an 80 percent success rate. I am still RRMS with lots of inflammation but the myeloablative has helped several people with SPMS. The negative is that the side effects can be more serious, which is why Dr. Burt only does the 'mini transplant'. There have been no deaths except maybe one person with PPMS, which they are not doing the procedure with them anymore.
                Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                  #9
                  I have been reading a little about these stem cell studies but not as much as some of the other new therapies. Your posts have prompted me to study this more closely.

                  This sounds very promising, but like everything else with this disease, it has some risks and will not be a day in the park.

                  I'm so tired of needles, IV's and meds but we all have to do what we have to do.

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                    #10
                    I am very scared and have been sitting on the fence now for a year on this. But recently I been feeling like I shake all over, today my ears feel a little numb and other misc symptoms. I could be going into another relapse and mine are so severe even though I make it through them without any residual damage. I look fine, I am not disabled but lets face it after 20 years it's probably going to happen. I NEED to do something and this might be my only option.

                    I have 2 little girls and I am afraid of the risk but also afraid of the disease.
                    Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                      #11
                      Yes Katje, I know how you feel. I think we must be very similar. By looking at me you wouldn't know anything was wrong. But when it hits it hits so hard and sooo fast. It's hit at work and people are shocked and scared, not to mention it's also embarrassing. Shouldn't be but it is. I'm totally spastic looking, I guess due to the fact that I'm having spasticity everywhere. lol

                      With 2 small children I'm sure your much younger than me, I'm 52, and like you I always bounce back with no residual damage but, (and I don't mean to scare you) on January 8th. an exacerbation hit me at work, it was bad.

                      My husband had to come get me at work and take me to the dr. Home health was called, IV steroids for 3 days and I thought all was going to be fine, but there's hardly any strength back in my left hand. My legs have recovered but my left hand is so weak and uncoordinated, I realize it's not been too long & I could get it back but it's never taken this long before. I'm getting scared.

                      If I was in your shoes, I'm sure I would probably do the stem cells. But I'm sure I would agonize over it for long while before I made my final decision. but I'm desperate. The interferon drugs do not work for me & make me sicker than the MS.

                      I'm having to type this with one hand, I believe my left hand is done for the day.

                      I know your scared I would be too. Go with your gut, usually it's the right decision. Also have you been able to talk to any one who has been through this? That may help with your decision.

                      Good luck I'm pulling for you.

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                        #12
                        Yes I have talked to 3 people who had it done, but I also talk to several other online who had this done. I think people who want this have nooo idea what really happens when you go through this treatment, but I do and I am afraid I might die. I really dont know if I am Strong enough.


                        My last relapse hafter a 15 year vacation it was thought I had a stroke. but they soon figured out it wasn't. My symptom only happened if I moved a certain way, it was the oddest MS attack my neuro ever saw but when he looked at my MRI it made sense to him. Now I think I am starting another and goodness knows where this one will end up leading. :/
                        Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                          #13
                          Katje, my heart broke when you stated that, "I'm afraid I might die", I just feel awful for you. I'm so sorry, it's soo much stress.

                          I know, because I believe with all my heart that stress caused this last exacerbation, well my nuero said it was stressed induced. The denial of Lemtrada just floored me. I'm so scared it's totally out of my control.

                          I'm on Ty, which is so great for me but I'm JCV+ with a pretty high index number and I'm soo scared of PML but I think more afraid of the rebound effect. I think this flare right before my infusion proves that I would have the rebound effect since he's moved me to every 8 weeks & I can't seem to make it that long.

                          What do we do? I have 2 friends that truly understand but I'm in a terrible marriage. My husband is awful to me. I was totally bedridden for a few days with this flare and we was just going to leave me all day by myself. When I told him he couldn't leave me alone, what was I suppose to do?, he got so mad and started yelling at me. He said, "What am I suppose to do? Just quit doing the things I want to do?" I said "Yes you are! For just a day or two." Well I'm sorry, I won't get into that. That is for another thread.

                          I know these words can't change your fear, but I just hope somehow you can feel the concern and good wishes that I send to you. Hang in there, I'm pulling for you.

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                            #14
                            I think I must be married to your husbands Brother.
                            Suspected MS 1985. dx 1994 still RRMS EDSS 1.0

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                              #15
                              I didn't know satan had a brother. Hahahahaha

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