MRF-Logo2019-Horizontal-RGB
NYKaren how are you doing
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

NYKaren how are you doing

› Forums › General Melanoma Community › NYKaren how are you doing

  • Post
    • February 1, 2013 at 2:42 am
    awillett1991
    Participant
      Was just wondering how you, Zel, and prednisone are all getting along. I tried to taper from 7.5 mg to 5 mg but it didn’t go well at all, so back to 7.5 mg now. I’m so messed up still from Ipi I guess. Anyway, knew you were hurting and was just thinking of you. Hope you are feeling better.

      Amy

      Was just wondering how you, Zel, and prednisone are all getting along. I tried to taper from 7.5 mg to 5 mg but it didn’t go well at all, so back to 7.5 mg now. I’m so messed up still from Ipi I guess. Anyway, knew you were hurting and was just thinking of you. Hope you are feeling better.

      Amy

    Viewing 2 reply threads
    • Replies
        • February 1, 2013 at 2:58 am
        NYKaren
        Participant
          Hi Amy,
          Thanks for checking. I saw onc today & he continues to be quite pleased with Zel response.
          My leg pain is severe and nothing relieves it. Tomorrow I’m starting acupuncture. I’m back down on 5 mg of pred, doc wants me to stop it in case it’s exacerbating the pain, which he believes is muscular. I can be off over weekend.
          We discussed on/off dosing of Zel, they suggested 3 weeks on, three off– that sounded too scary to me so we’re trying 3 on 2 off– dosage down from 8 pills/day to 6.
          Thank you so much for your post– it means so much to me.
          So what happened when you tried to taper?
          Hugs,
          Karen
            • February 1, 2013 at 8:20 am
            aldakota22
            Participant

              Hi Karen, Glad to see your doc is happy with your progress on "Z".Too bad about the leg pain though.Hopefully the new plan on and off will be the right mix for you.Always kept in my prayers.Bet the Beast.  Al

              • February 1, 2013 at 8:20 am
              aldakota22
              Participant

                Hi Karen, Glad to see your doc is happy with your progress on "Z".Too bad about the leg pain though.Hopefully the new plan on and off will be the right mix for you.Always kept in my prayers.Bet the Beast.  Al

                • February 1, 2013 at 8:20 am
                aldakota22
                Participant

                  Hi Karen, Glad to see your doc is happy with your progress on "Z".Too bad about the leg pain though.Hopefully the new plan on and off will be the right mix for you.Always kept in my prayers.Bet the Beast.  Al

                  • February 1, 2013 at 4:04 pm
                  awillett1991
                  Participant
                    So sorry to hear about your leg pain Karen, it is in the muscle? I’ve been thinking of trying acupuncture myself for various aches and pains, maybe it would help reduce my meds. Am trying 2 wks on/1 wk off for Zel, and I’ll talk to dr Tues about trying to taper Pred again. Had some N/V, dehydration I guess from the taper, but am better now. Maybe just wasn’t ready.

                    I had some wicked, awful, all over muscle pain in Dec. from combining Ipi & Zel, but sounds different from yours so I’m glad they are checking it.

                    Keep us updated!
                    Amy

                    • February 1, 2013 at 4:04 pm
                    awillett1991
                    Participant
                      So sorry to hear about your leg pain Karen, it is in the muscle? I’ve been thinking of trying acupuncture myself for various aches and pains, maybe it would help reduce my meds. Am trying 2 wks on/1 wk off for Zel, and I’ll talk to dr Tues about trying to taper Pred again. Had some N/V, dehydration I guess from the taper, but am better now. Maybe just wasn’t ready.

                      I had some wicked, awful, all over muscle pain in Dec. from combining Ipi & Zel, but sounds different from yours so I’m glad they are checking it.

                      Keep us updated!
                      Amy

                      • February 1, 2013 at 4:04 pm
                      awillett1991
                      Participant
                        So sorry to hear about your leg pain Karen, it is in the muscle? I’ve been thinking of trying acupuncture myself for various aches and pains, maybe it would help reduce my meds. Am trying 2 wks on/1 wk off for Zel, and I’ll talk to dr Tues about trying to taper Pred again. Had some N/V, dehydration I guess from the taper, but am better now. Maybe just wasn’t ready.

                        I had some wicked, awful, all over muscle pain in Dec. from combining Ipi & Zel, but sounds different from yours so I’m glad they are checking it.

                        Keep us updated!
                        Amy

                      • February 1, 2013 at 2:58 am
                      NYKaren
                      Participant
                        Hi Amy,
                        Thanks for checking. I saw onc today & he continues to be quite pleased with Zel response.
                        My leg pain is severe and nothing relieves it. Tomorrow I’m starting acupuncture. I’m back down on 5 mg of pred, doc wants me to stop it in case it’s exacerbating the pain, which he believes is muscular. I can be off over weekend.
                        We discussed on/off dosing of Zel, they suggested 3 weeks on, three off– that sounded too scary to me so we’re trying 3 on 2 off– dosage down from 8 pills/day to 6.
                        Thank you so much for your post– it means so much to me.
                        So what happened when you tried to taper?
                        Hugs,
                        Karen
                        • February 1, 2013 at 2:58 am
                        NYKaren
                        Participant
                          Hi Amy,
                          Thanks for checking. I saw onc today & he continues to be quite pleased with Zel response.
                          My leg pain is severe and nothing relieves it. Tomorrow I’m starting acupuncture. I’m back down on 5 mg of pred, doc wants me to stop it in case it’s exacerbating the pain, which he believes is muscular. I can be off over weekend.
                          We discussed on/off dosing of Zel, they suggested 3 weeks on, three off– that sounded too scary to me so we’re trying 3 on 2 off– dosage down from 8 pills/day to 6.
                          Thank you so much for your post– it means so much to me.
                          So what happened when you tried to taper?
                          Hugs,
                          Karen
                      Viewing 2 reply threads
                      • You must be logged in to reply to this topic.
                      About the MRF Patient Forum

                      The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                      The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                      Popular Topics