Good MRI result

› Forums › General Melanoma Community › Good MRI result

  • Post
    • August 7, 2013 at 12:22 am
    NYKaren
    Participant
      Hi everyone,
      I had MRI last week & saw neurosurgeon yesterday. He said all looks good. Tumors are dying and no new ones. Phew! I am tapering completely off steroids by end of week. I had a scare about 2 weeks ago, inflamed brain mets, more steroids & day in hospital to make sure all was ok. I had lost most of my ability to speak for a few hours & landed in the urgent care of NY Hospital. I couldn’t remember much, but I did manage to tell the doc what my doc’s name is: Kondziolka. How’s that for a mouthful?

      I have another set of CT scans in 2 week on the 20th, then finally will have blood work/and will sign informed consent on the 21st ( and be randomized) for Merck PD1 phase II trial. Boy I wish it could still be the phase I study, but at least if its chemo, it doesn’t have to stay that way. Now, since I did have the scans and know it (was) brain mets, and positive lymph nodes, and spots in lungs and possibly liver, i have the dabrafinib in my back pocket too. The mail order pharm says it’s on it’s way. It sounds like people are being approved for mono-therapy.

      I guess that’s it for now.
      Karen

    Viewing 14 reply threads
    • Replies
        • August 7, 2013 at 3:12 am
        aldakota22
        Participant

          Thank God that things are going in the right direction.Happy to read such a positve post from you Karen.Keep the good news comming.All  the best.  Beat the Beast.    Al

          • August 7, 2013 at 3:12 am
          aldakota22
          Participant

            Thank God that things are going in the right direction.Happy to read such a positve post from you Karen.Keep the good news comming.All  the best.  Beat the Beast.    Al

            • August 7, 2013 at 3:12 am
            aldakota22
            Participant

              Thank God that things are going in the right direction.Happy to read such a positve post from you Karen.Keep the good news comming.All  the best.  Beat the Beast.    Al

              • August 7, 2013 at 7:59 am
              DeniseK
              Participant

                Hi Karen,

                I too am waiting for my Dabrafinib to come in the mail, he said I should get it this Thursday.  Since I'm still on Yervoy and 1/2 dose Z my doctor wants me to just transfer over to the Dab at 1/2 dose until I finish Ipi.  I have to wait another 8 weeks for stable brain Mri's, the gamma knife doc found 16 new brain mets but he zapped them all so I'm thinking I should be stable in 8 weeks (fingers crossed).  With your clinical trial are they asking you for a 4 week washout period and how long for stable brain scans?  Just curious because I'm hearing different time periods.

                Thanks Karen,

                Hang in there girl

                Denise

                • August 7, 2013 at 7:59 am
                DeniseK
                Participant

                  Hi Karen,

                  I too am waiting for my Dabrafinib to come in the mail, he said I should get it this Thursday.  Since I'm still on Yervoy and 1/2 dose Z my doctor wants me to just transfer over to the Dab at 1/2 dose until I finish Ipi.  I have to wait another 8 weeks for stable brain Mri's, the gamma knife doc found 16 new brain mets but he zapped them all so I'm thinking I should be stable in 8 weeks (fingers crossed).  With your clinical trial are they asking you for a 4 week washout period and how long for stable brain scans?  Just curious because I'm hearing different time periods.

                  Thanks Karen,

                  Hang in there girl

                  Denise

                  • August 7, 2013 at 7:59 am
                  DeniseK
                  Participant

                    Hi Karen,

                    I too am waiting for my Dabrafinib to come in the mail, he said I should get it this Thursday.  Since I'm still on Yervoy and 1/2 dose Z my doctor wants me to just transfer over to the Dab at 1/2 dose until I finish Ipi.  I have to wait another 8 weeks for stable brain Mri's, the gamma knife doc found 16 new brain mets but he zapped them all so I'm thinking I should be stable in 8 weeks (fingers crossed).  With your clinical trial are they asking you for a 4 week washout period and how long for stable brain scans?  Just curious because I'm hearing different time periods.

                    Thanks Karen,

                    Hang in there girl

                    Denise

                    • August 7, 2013 at 8:42 am
                    NYKaren
                    Participant
                      Denise, I FINALLY figured out that there was nothing for me to ״wait” for, because I hadn’t actually signed the informed consent, so I wasn’t actually “in” the trial. I worried so about it, believe me.
                      It’s taken me 2 years to get to this point with PD1, it feels either that this cannot finally be happening or it’s finally time for me to get the drug. The amount of disease i’ve progressed to is weighing me heavily toward the latter. I pray we get to be in this together and both kick Mel’s butt right to the ground. Frankly, I’m still shocked at how well Zel worked and how just as quickly I got to stage 4 with 11 brain mets.
                      Karen
                      • August 7, 2013 at 12:13 pm
                      hbecker
                      Participant

                        Karen – just wanted to say I'm pulling for you! glad things are OK now and hope you get the right arm of the trial.

                        Best –

                        Hazel

                        • August 7, 2013 at 12:13 pm
                        hbecker
                        Participant

                          Karen – just wanted to say I'm pulling for you! glad things are OK now and hope you get the right arm of the trial.

                          Best –

                          Hazel

                          • August 7, 2013 at 12:13 pm
                          hbecker
                          Participant

                            Karen – just wanted to say I'm pulling for you! glad things are OK now and hope you get the right arm of the trial.

                            Best –

                            Hazel

                            • August 7, 2013 at 1:02 pm
                            awillett1991
                            Participant
                              Karen,

                              So glad to hear you got some good news!! The horror of it all is sometimes overwhelming. Thanks for posting this update and keep fighting!!

                              Amy

                              • August 8, 2013 at 6:32 am
                              DeniseK
                              Participant

                                I'm sending you all my positive thoughts your way Karen  🙂

                                Hang in there!!

                                • August 12, 2013 at 2:12 pm
                                jag
                                Participant

                                  Yay!

                                  Happy to hear it Karen, as "the wife" always told me, you are not allowed to die-hang in there also glad to see you are keeping your options open.  For the longest time I wanted Ippi, and didn't get it.  Maybe PD1 will do the trick and you will get it, but other things can work too.  I made it out alive before all of the newfangled stuff that is out there today.

                                  Best.

                                  John

                                  • August 12, 2013 at 2:12 pm
                                  jag
                                  Participant

                                    Yay!

                                    Happy to hear it Karen, as "the wife" always told me, you are not allowed to die-hang in there also glad to see you are keeping your options open.  For the longest time I wanted Ippi, and didn't get it.  Maybe PD1 will do the trick and you will get it, but other things can work too.  I made it out alive before all of the newfangled stuff that is out there today.

                                    Best.

                                    John

                                    • August 12, 2013 at 2:12 pm
                                    jag
                                    Participant

                                      Yay!

                                      Happy to hear it Karen, as "the wife" always told me, you are not allowed to die-hang in there also glad to see you are keeping your options open.  For the longest time I wanted Ippi, and didn't get it.  Maybe PD1 will do the trick and you will get it, but other things can work too.  I made it out alive before all of the newfangled stuff that is out there today.

                                      Best.

                                      John

                                      • August 7, 2013 at 8:42 am
                                      NYKaren
                                      Participant
                                        Denise, I FINALLY figured out that there was nothing for me to ״wait” for, because I hadn’t actually signed the informed consent, so I wasn’t actually “in” the trial. I worried so about it, believe me.
                                        It’s taken me 2 years to get to this point with PD1, it feels either that this cannot finally be happening or it’s finally time for me to get the drug. The amount of disease i’ve progressed to is weighing me heavily toward the latter. I pray we get to be in this together and both kick Mel’s butt right to the ground. Frankly, I’m still shocked at how well Zel worked and how just as quickly I got to stage 4 with 11 brain mets.
                                        Karen
                                        • August 7, 2013 at 8:42 am
                                        NYKaren
                                        Participant
                                          Denise, I FINALLY figured out that there was nothing for me to ״wait” for, because I hadn’t actually signed the informed consent, so I wasn’t actually “in” the trial. I worried so about it, believe me.
                                          It’s taken me 2 years to get to this point with PD1, it feels either that this cannot finally be happening or it’s finally time for me to get the drug. The amount of disease i’ve progressed to is weighing me heavily toward the latter. I pray we get to be in this together and both kick Mel’s butt right to the ground. Frankly, I’m still shocked at how well Zel worked and how just as quickly I got to stage 4 with 11 brain mets.
                                          Karen
                                          • August 7, 2013 at 1:02 pm
                                          awillett1991
                                          Participant
                                            Karen,

                                            So glad to hear you got some good news!! The horror of it all is sometimes overwhelming. Thanks for posting this update and keep fighting!!

                                            Amy

                                            • August 7, 2013 at 1:02 pm
                                            awillett1991
                                            Participant
                                              Karen,

                                              So glad to hear you got some good news!! The horror of it all is sometimes overwhelming. Thanks for posting this update and keep fighting!!

                                              Amy

                                              • August 8, 2013 at 6:32 am
                                              DeniseK
                                              Participant

                                                I'm sending you all my positive thoughts your way Karen  🙂

                                                Hang in there!!

                                                • August 8, 2013 at 6:32 am
                                                DeniseK
                                                Participant

                                                  I'm sending you all my positive thoughts your way Karen  🙂

                                                  Hang in there!!

                                              Viewing 14 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