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  1. kellykago

    PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

    hello i havent been on here in awhile so hello
  2. kellykago

    PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

    Still hanging in here. Stopped radicava in June because Dr felt it sped up my progression. I got my feeding tube July 2. I've still been eating but that it ending soon. Totally lost ability to talk but body still remains strong. We have our Walk to Defeat ALS Walk on Saturday. We've raised about...
  3. kellykago

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    My doctor felt that their ALS clearly had an increase in progression since being on radicava. She didn't mention if they slowed down again. I don't think there was enough time to access that. With me I've been extremely slow in progressing. Almost 3 years since first symptoms. Since being on...
  4. kellykago

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    Ive been on Radicava since September and my speech and chewing have declined more rapidly than the trajectory prior to Radicava. At my clinic appt Thurs, my Dr. was unsure if this could be due to the Radicava. She just can;t say for sure but she took two patients off of it who clearly...
  5. kellykago

    PALS roll call Wednesdays (or whenever) PALS ONLY PLEASE

    Hello all! I've been missing in action just trying to enjoy life. I just finished cycle 7 of radicava. Doing great. My speech has deteriorated more in the past 6 months and I'm starting too thicken my water and modify foods but am keeping a positive attitude. My body is still strong and I try...
  6. kellykago

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I had one bag that also leaked. My husband said it felt crunchy when he spiked it and we couldn't get it to stop leaking. Pharmacy had to send another bag.
  7. kellykago

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I start my second round tomorrow. We do the infusions at home ourselves. Kaiser delivers the medication to my home weekly. I had a picc placed on the second day of my first round. No problems.
  8. kellykago

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I only have bulbar symptoms so no muscle spasms yet. I finished day 14 yesterday. I can say I have had more energy , less need for napping , improved ability to blow my nose, and less issues with mucous sitting at the back of my throat. I'll take it! I agree the infusions are a drag.
  9. kellykago

    Radicava with Kaiser

    Yes I am Kaiser in California on day 7 of infusion.
  10. kellykago

    Have you started Radicava? Use this thread to discuss experiences with receiving radi

    I am on day 7 of the infusion and am doing well. I have had no adverse side effects. I did the first 5 in fusions in the clinic and the last 2 at home. I have a picc line and we are doing remaining infusions at home from now on. I will have bloodwork done after each cycle to monitor. My...
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