Cyberknife Delay

Forums General Melanoma Community Cyberknife Delay

  • Post
    Janet Lee
    Participant

      My husband was first diagnosed with Stage IV Melanoma this past January 18. He started radiation for pelvic/lower back pain on January 25. Cyberknife for brain lesion was supposed to start soon after. His "mask" was made around January 21st, another MRI was done of the brain on January 27, and the "mapping" was completed for the cyberknife on January 28/29. The radiation oncologist said the cyberknife would be done last week or today (Mon 2/4).

      My husband was first diagnosed with Stage IV Melanoma this past January 18. He started radiation for pelvic/lower back pain on January 25. Cyberknife for brain lesion was supposed to start soon after. His "mask" was made around January 21st, another MRI was done of the brain on January 27, and the "mapping" was completed for the cyberknife on January 28/29. The radiation oncologist said the cyberknife would be done last week or today (Mon 2/4).

      Tonight the radiation oncology department informed us that the cyberknife can't be done until next week because they are short-handed.

      I am so upset I can't even think. Don's brain tumor is asymptomatic at this time, but it was my understanding that we needed to get this done asap. Each day is a delay in his treatment. Each day that the brain tumor is not addressed is one more day that makes him ineligible for any clinical trials.

      If I'm overreacting, please tell me. We are coordinating his care with Dana Farber, but doing the radiation at a nearby hospital. Should I call the onc at Dana Farber?

      Thanks!

      Janet

    Viewing 8 reply threads
    • Replies
        washoegal
        Participant

          My theory is the squeaky wheel always gets more attention.  However be polite but urgent. 

          So very, very sorry.

          broken heart

          Mary

          washoegal
          Participant

            My theory is the squeaky wheel always gets more attention.  However be polite but urgent. 

            So very, very sorry.

            broken heart

            Mary

              NYKaren
              Participant
                Absolutely. I bet the onc can pull some strings.
                Or maybe he׳ll say it’s okay to wait a week. Either way you absolutely should call.
                Maybe your husband can have it done at DF?
                Fingers crossed,
                Karen
                NYKaren
                Participant
                  Absolutely. I bet the onc can pull some strings.
                  Or maybe he׳ll say it’s okay to wait a week. Either way you absolutely should call.
                  Maybe your husband can have it done at DF?
                  Fingers crossed,
                  Karen
                  NYKaren
                  Participant
                    Absolutely. I bet the onc can pull some strings.
                    Or maybe he׳ll say it’s okay to wait a week. Either way you absolutely should call.
                    Maybe your husband can have it done at DF?
                    Fingers crossed,
                    Karen
                  washoegal
                  Participant

                    My theory is the squeaky wheel always gets more attention.  However be polite but urgent. 

                    So very, very sorry.

                    broken heart

                    Mary

                    kylez
                    Participant

                      Hi Janet, 

                       

                      Do you know if they plan to redo the MRI and mapping, or just use the same plan for what will probably be surgery 2 weeks or longer past the date of the MRI used to build the mapping/plan?

                      Since I don't know enough to know if you're overeacting or not, I also recommend you check with Dana Farber. 

                      My layman's understanding is that the less time between the mapping MRI/plan and the actual radiosurgery, the more accurate the radiosurgery is likely to be, since the brain can change, especially when there's a tumor potentially changing the brain. I think I had midline shifts at least once for example. 

                      My first (and only) CyberKnife radiosurgery, the MRI/mapping plan was done 1 week prior to the radiosurgery, same timing as your husband's was going to be.

                       

                      6 months later, my first (and only) Gamma Knife radiosurgery, at a different medical center, an MRI was done same day, in the morning, and I had the radiosurgery in the afternoon. They did the MRI with the metal Gamma Knife frame already installed on my skull (the frame must be non-problematic for the MRI machine.) But they also had MRIs from 2 weeks before, so I don't know if the morning day-of-radiosurgery MRI was used to do the whole plan, fine-tune a "draft" plan to account for any brain changes over the 2 weeks, or just check. I *suspect* it was used to at least fine-tune an existing "draft" plan, but I don't know for sure. 

                      I hope Dana Farber can give you some useful guidance on how much the timeliness matters, including the timing betwen the MRI used ot build the radiosurgery mapping/plan and the actual radiosurgery itself.
                       
                      I will also say I felt in better hands the second time around — a facility with a fairly widely respected radiation oncology department. I do think I felt better they were doing a same-day MRI, I just didn't inquire as to the details of how much of the plan was built, when, based on which MRI.
                      kylez
                      Participant

                        Hi Janet, 

                         

                        Do you know if they plan to redo the MRI and mapping, or just use the same plan for what will probably be surgery 2 weeks or longer past the date of the MRI used to build the mapping/plan?

                        Since I don't know enough to know if you're overeacting or not, I also recommend you check with Dana Farber. 

                        My layman's understanding is that the less time between the mapping MRI/plan and the actual radiosurgery, the more accurate the radiosurgery is likely to be, since the brain can change, especially when there's a tumor potentially changing the brain. I think I had midline shifts at least once for example. 

                        My first (and only) CyberKnife radiosurgery, the MRI/mapping plan was done 1 week prior to the radiosurgery, same timing as your husband's was going to be.

                         

                        6 months later, my first (and only) Gamma Knife radiosurgery, at a different medical center, an MRI was done same day, in the morning, and I had the radiosurgery in the afternoon. They did the MRI with the metal Gamma Knife frame already installed on my skull (the frame must be non-problematic for the MRI machine.) But they also had MRIs from 2 weeks before, so I don't know if the morning day-of-radiosurgery MRI was used to do the whole plan, fine-tune a "draft" plan to account for any brain changes over the 2 weeks, or just check. I *suspect* it was used to at least fine-tune an existing "draft" plan, but I don't know for sure. 

                        I hope Dana Farber can give you some useful guidance on how much the timeliness matters, including the timing betwen the MRI used ot build the radiosurgery mapping/plan and the actual radiosurgery itself.
                         
                        I will also say I felt in better hands the second time around — a facility with a fairly widely respected radiation oncology department. I do think I felt better they were doing a same-day MRI, I just didn't inquire as to the details of how much of the plan was built, when, based on which MRI.
                        kylez
                        Participant

                          Hi Janet, 

                           

                          Do you know if they plan to redo the MRI and mapping, or just use the same plan for what will probably be surgery 2 weeks or longer past the date of the MRI used to build the mapping/plan?

                          Since I don't know enough to know if you're overeacting or not, I also recommend you check with Dana Farber. 

                          My layman's understanding is that the less time between the mapping MRI/plan and the actual radiosurgery, the more accurate the radiosurgery is likely to be, since the brain can change, especially when there's a tumor potentially changing the brain. I think I had midline shifts at least once for example. 

                          My first (and only) CyberKnife radiosurgery, the MRI/mapping plan was done 1 week prior to the radiosurgery, same timing as your husband's was going to be.

                           

                          6 months later, my first (and only) Gamma Knife radiosurgery, at a different medical center, an MRI was done same day, in the morning, and I had the radiosurgery in the afternoon. They did the MRI with the metal Gamma Knife frame already installed on my skull (the frame must be non-problematic for the MRI machine.) But they also had MRIs from 2 weeks before, so I don't know if the morning day-of-radiosurgery MRI was used to do the whole plan, fine-tune a "draft" plan to account for any brain changes over the 2 weeks, or just check. I *suspect* it was used to at least fine-tune an existing "draft" plan, but I don't know for sure. 

                          I hope Dana Farber can give you some useful guidance on how much the timeliness matters, including the timing betwen the MRI used ot build the radiosurgery mapping/plan and the actual radiosurgery itself.
                           
                          I will also say I felt in better hands the second time around — a facility with a fairly widely respected radiation oncology department. I do think I felt better they were doing a same-day MRI, I just didn't inquire as to the details of how much of the plan was built, when, based on which MRI.
                          Janet Lee
                          Participant

                            As always, thank you everyone for your comments. It's so helpful to have this wonderful community to bounce questions and experiences off of. This squeaky wheeel is off to squawk.

                            Janet Lee
                            Participant

                              As always, thank you everyone for your comments. It's so helpful to have this wonderful community to bounce questions and experiences off of. This squeaky wheeel is off to squawk.

                              Janet Lee
                              Participant

                                As always, thank you everyone for your comments. It's so helpful to have this wonderful community to bounce questions and experiences off of. This squeaky wheeel is off to squawk.

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