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Posse up – 4th ipi, then BRAF
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Posse up – 4th ipi, then BRAF

› Forums › Caregiver Community › Posse up – 4th ipi, then BRAF

  • Post
    • July 29, 2011 at 11:47 am
    TracyLee
    Participant

      Hi y'all,

      Fourth and final ipi transfusion today. The consensus is that I'm not responding, I'm praying I'm a late response.

      I must brag on my team. I was supposed to have my treatment yesterday afternoon. Hospital called and said I needed to re-schedule to 4 p.m. today. They couldn't obtain the drugs sooner.

      Hi y'all,

      Fourth and final ipi transfusion today. The consensus is that I'm not responding, I'm praying I'm a late response.

      I must brag on my team. I was supposed to have my treatment yesterday afternoon. Hospital called and said I needed to re-schedule to 4 p.m. today. They couldn't obtain the drugs sooner.

      Now, our transfusion center is open from 8 a.m. – 5 p.m. This process takes around 2.5 – 3 hours. So I knew 4 p.m. was too late to start. But…my doctor and his assistant volunteered to stay with me until I was done. I call that caring above and beyond the call of duty.

      Next week up to U of Penn to start BRAF+ expanded access trial. Prayerfully I respond to ipi/BRAF. My neck is very distorted, although I'm able to hide most of it with my hair. Plus I had fluid in my lungs and had to be drained this past Wednesday.

      Praying for a comfortable, and responsive, weekend to all the warriors and caregivers, on this board.

      TracyLee

    Viewing 9 reply threads
    • Replies
        • July 29, 2011 at 11:54 am
        Vermont_Donna
        Participant

          Hi TracyLee,

          Wishing you a comfortable 4th infusion (yay for your medical team!) and hoping that Ipi IS working hard. I am glad you have the BRAF treatments right around the corner. Are you still working??

          Vermont_Donna, stage 3a, NED

            • July 29, 2011 at 11:58 am
            TracyLee
            Participant

              Donna,

              Still working full time. Came in after lung drain (shhh, I went home to rest, per my doctor).

              I'm a desk jockey, so that makes it easier on me.

              Plus I have awesome co-workers, and my boss is the BEST. Very kind, very supportive. Couldn't do it without all of them.

              Not to mention, church…they are feeding us the next two days, due to my treatment.

              TracyLee

              • July 29, 2011 at 11:58 am
              TracyLee
              Participant

                Donna,

                Still working full time. Came in after lung drain (shhh, I went home to rest, per my doctor).

                I'm a desk jockey, so that makes it easier on me.

                Plus I have awesome co-workers, and my boss is the BEST. Very kind, very supportive. Couldn't do it without all of them.

                Not to mention, church…they are feeding us the next two days, due to my treatment.

                TracyLee

              • July 29, 2011 at 11:54 am
              Vermont_Donna
              Participant

                Hi TracyLee,

                Wishing you a comfortable 4th infusion (yay for your medical team!) and hoping that Ipi IS working hard. I am glad you have the BRAF treatments right around the corner. Are you still working??

                Vermont_Donna, stage 3a, NED

                • July 29, 2011 at 12:04 pm
                Carol Taylor
                Participant

                  Tracy,

                  Sounds like you're at the right place surrounded by the right people! I'm sorry you don't seem to be responding and you've had fluid in your lungs. But, as you say, prayerfully you're a late responder and you've got a game plan…and hair!

                  You're going through some tough stuff, what you describe can't be a cake walk. We're here for you if you want to scream a little (or holler a lot). But I join you in your prayers.

                  Lord, You know and You are there. See Tracy through this season and enable her body, please to respond to something that will help her. Thank You for the caring people she has working with her and please grant her some comfort and response. Amen.

                  Grace and peace Tracy,

                  Carol

                  • July 29, 2011 at 12:04 pm
                  Carol Taylor
                  Participant

                    Tracy,

                    Sounds like you're at the right place surrounded by the right people! I'm sorry you don't seem to be responding and you've had fluid in your lungs. But, as you say, prayerfully you're a late responder and you've got a game plan…and hair!

                    You're going through some tough stuff, what you describe can't be a cake walk. We're here for you if you want to scream a little (or holler a lot). But I join you in your prayers.

                    Lord, You know and You are there. See Tracy through this season and enable her body, please to respond to something that will help her. Thank You for the caring people she has working with her and please grant her some comfort and response. Amen.

                    Grace and peace Tracy,

                    Carol

                    • July 29, 2011 at 2:06 pm
                    Rebecca and Bob
                    Participant

                      TracyLee,

                      It's great that you have a good team looking out for you. I'm amazed you are still working, my husband did too. He worked through his IL-2 treatments. Sending prayers your way that BRAF works for you!

                      Rebecca and Bob

                      • July 29, 2011 at 2:06 pm
                      Rebecca and Bob
                      Participant

                        TracyLee,

                        It's great that you have a good team looking out for you. I'm amazed you are still working, my husband did too. He worked through his IL-2 treatments. Sending prayers your way that BRAF works for you!

                        Rebecca and Bob

                        • July 29, 2011 at 7:50 pm
                        MaryBeth and Jeff
                        Participant

                          Sending prayers your way that you are a late IPI responder. It was the same consensus for my husband that he was a non-responder. But Yervoy did indeed crush the 19 brain lesions.  Praying for you and him that the body responds as well. Have a wonderful weekend Tracy.

                          • July 29, 2011 at 7:50 pm
                          MaryBeth and Jeff
                          Participant

                            Sending prayers your way that you are a late IPI responder. It was the same consensus for my husband that he was a non-responder. But Yervoy did indeed crush the 19 brain lesions.  Praying for you and him that the body responds as well. Have a wonderful weekend Tracy.

                            • July 30, 2011 at 9:40 pm
                            MaryD
                            Participant

                              Hi TracyLee,

                              How kind of your Dr and his assistant – it makes a huge difference having a supportive medical team!

                              Sending up prayers that you are a late reponder (and it can happen that way) and very happy that you're headed into the Braf trial so you can hit the melanoma with both barrels.

                              Hoping that, after your treatment, you can enjoy a relaxing weekend and let yourself be pampered  🙂

                              Best regards,

                              Mary

                               

                               

                                • August 1, 2011 at 11:03 pm
                                NYKaren
                                Participant

                                  Hi TracyLee,

                                  Sorry I missed this post.  So, we both had our 4th infusion.  I'm sorry that you're going through a rough time but glad you're starting the Braf trial.

                                  A small piece of my mel flaked off and I keep wishing and hoping that more will–but wishing & hoping don't make it so!    It's like a watched pot never boiling.

                                  Take care,

                                  karen

                                  • August 1, 2011 at 11:03 pm
                                  NYKaren
                                  Participant

                                    Hi TracyLee,

                                    Sorry I missed this post.  So, we both had our 4th infusion.  I'm sorry that you're going through a rough time but glad you're starting the Braf trial.

                                    A small piece of my mel flaked off and I keep wishing and hoping that more will–but wishing & hoping don't make it so!    It's like a watched pot never boiling.

                                    Take care,

                                    karen

                                  • July 30, 2011 at 9:40 pm
                                  MaryD
                                  Participant

                                    Hi TracyLee,

                                    How kind of your Dr and his assistant – it makes a huge difference having a supportive medical team!

                                    Sending up prayers that you are a late reponder (and it can happen that way) and very happy that you're headed into the Braf trial so you can hit the melanoma with both barrels.

                                    Hoping that, after your treatment, you can enjoy a relaxing weekend and let yourself be pampered  🙂

                                    Best regards,

                                    Mary

                                     

                                     

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