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Drat, bad news, cardiac met
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Drat, bad news, cardiac met

› Forums › General Melanoma Community › Drat, bad news, cardiac met

  • Post
    • July 1, 2013 at 8:52 am
    AllyNTAus
    Participant
      So I went for my scans and reviews today at the end of cycle 4 on the Novartis BRAF/MEK inhibitor combination. I had a feeling that things might not be looking all that good because I just haven’t been feeling 100% well for the last few weeks, nothing really solid I could define except for some very grumbly, gassy abdominal symptoms that have waxed and waned, so if anything I was thinking there might be something going on in my intestinal tract.

      What I wasn’t expecting was to be told that I have a fairly large cardiac met, 30mm diameter, 40mm high, in the right atrium. What surprised me even more was to see the report saying that this met was apparently “more subtle” and somewhat smaller on my previous 2 scans (May and April), but the reports on those two scans didn’t mention it at all! I’m a bit bemused and peeved about that.

      Various lymph nodes throughout my lower abdominal/pelvic region have grown too and there are some new nodules showing up, so it has really taken off.

      So I am seeing a cardio thoracic surgeon on Wednesday to discuss the possibility of surgical removal. If this isn’t possible then it will be radiotherapy. Clearly the cardiac met is serious stuff and needs some immediate aggressive treatment. After I am well enough the plan is to start on Ipi, which thankfully has just been put on our government subsidised medicines list. And my doctor tells me that if Ipi doesn’t work then
      Anti PD1 should still be an option, there are just not any trial seats for it (either alone or in combo with Ipi) just at the moment.

      Aargh what a rollercoaster! Would be interested to hear from anyone else with experience of cardiac mets.
      Ally

    Viewing 14 reply threads
    • Replies
        • July 1, 2013 at 2:57 pm
        Sherron
        Participant

          Please don't delay in the stomach area also…..it can take off agressively there.  I realize the heart is top priority right now for you….But don't delay long into getting to the stomach area…that is where it got my wonderful husband.  I will be praying for you for swift action on both areas.

          Take Care,

          Sherron, wife to Jim FOREVER

          • July 1, 2013 at 2:57 pm
          Sherron
          Participant

            Please don't delay in the stomach area also…..it can take off agressively there.  I realize the heart is top priority right now for you….But don't delay long into getting to the stomach area…that is where it got my wonderful husband.  I will be praying for you for swift action on both areas.

            Take Care,

            Sherron, wife to Jim FOREVER

            • July 1, 2013 at 2:57 pm
            Sherron
            Participant

              Please don't delay in the stomach area also…..it can take off agressively there.  I realize the heart is top priority right now for you….But don't delay long into getting to the stomach area…that is where it got my wonderful husband.  I will be praying for you for swift action on both areas.

              Take Care,

              Sherron, wife to Jim FOREVER

              • July 1, 2013 at 2:59 pm
              awillett1991
              Participant
                Ally,

                I have been dealing w a stinking cardiac met over a year. It is life threatening, now, MRI a month ago showed it as 34 x 61 x 64 mm, right atrium, ventricle, and it has grown up into the pulmonary artery and is threatening to block off blood flow to my lungs. PM me and I will tell you ad nauseum about the steps taken. What I’ve been told, etc.

                I’m on Merck’s PD1 now and praying this stuff kicks in YESTERDAY!!

                So so very sorry to hear this, I know you must be devastated.

                Amy

                • July 1, 2013 at 2:59 pm
                awillett1991
                Participant
                  Ally,

                  I have been dealing w a stinking cardiac met over a year. It is life threatening, now, MRI a month ago showed it as 34 x 61 x 64 mm, right atrium, ventricle, and it has grown up into the pulmonary artery and is threatening to block off blood flow to my lungs. PM me and I will tell you ad nauseum about the steps taken. What I’ve been told, etc.

                  I’m on Merck’s PD1 now and praying this stuff kicks in YESTERDAY!!

                  So so very sorry to hear this, I know you must be devastated.

                  Amy

                  • July 1, 2013 at 2:59 pm
                  awillett1991
                  Participant
                    Ally,

                    I have been dealing w a stinking cardiac met over a year. It is life threatening, now, MRI a month ago showed it as 34 x 61 x 64 mm, right atrium, ventricle, and it has grown up into the pulmonary artery and is threatening to block off blood flow to my lungs. PM me and I will tell you ad nauseum about the steps taken. What I’ve been told, etc.

                    I’m on Merck’s PD1 now and praying this stuff kicks in YESTERDAY!!

                    So so very sorry to hear this, I know you must be devastated.

                    Amy

                    • July 1, 2013 at 3:01 pm
                    Sherron
                    Participant

                      Please don't delay in the stomach area also…..it can take off agressively there.  I realize the heart is top priority right now for you….But don't delay long into getting to the stomach area…that is where it got my wonderful husband.  I will be praying for you for swift action on both areas.

                      Take Care,

                      Sherron, wife to Jim FOREVER

                      • July 1, 2013 at 3:01 pm
                      Sherron
                      Participant

                        Please don't delay in the stomach area also…..it can take off agressively there.  I realize the heart is top priority right now for you….But don't delay long into getting to the stomach area…that is where it got my wonderful husband.  I will be praying for you for swift action on both areas.

                        Take Care,

                        Sherron, wife to Jim FOREVER

                        • July 1, 2013 at 3:01 pm
                        Sherron
                        Participant

                          Please don't delay in the stomach area also…..it can take off agressively there.  I realize the heart is top priority right now for you….But don't delay long into getting to the stomach area…that is where it got my wonderful husband.  I will be praying for you for swift action on both areas.

                          Take Care,

                          Sherron, wife to Jim FOREVER

                          • July 3, 2013 at 12:49 pm
                          AllyNTAus
                          Participant
                            I met with the cardiac surgeon today, he was very impressive and compassionate, and was quite confident of being able to remove the tumour, the only issue is just whether he can get it all with clear margins which he won’t know until he goes in.

                            The worst case scenario is that in resecting and repairing, he might have to take some of the tissue that provides pace-making function in the heart, but if so he will put in a pacemaker to deal with this.

                            I am being admitted to hospital on Monday 8th for surgery on the 9th, about a 9 day stay then gentle recovery at home, hopefully well enough to start Ipi within a few weeks. Fingers crossed!

                            • July 3, 2013 at 12:49 pm
                            AllyNTAus
                            Participant
                              I met with the cardiac surgeon today, he was very impressive and compassionate, and was quite confident of being able to remove the tumour, the only issue is just whether he can get it all with clear margins which he won’t know until he goes in.

                              The worst case scenario is that in resecting and repairing, he might have to take some of the tissue that provides pace-making function in the heart, but if so he will put in a pacemaker to deal with this.

                              I am being admitted to hospital on Monday 8th for surgery on the 9th, about a 9 day stay then gentle recovery at home, hopefully well enough to start Ipi within a few weeks. Fingers crossed!

                              • July 3, 2013 at 12:49 pm
                              AllyNTAus
                              Participant
                                I met with the cardiac surgeon today, he was very impressive and compassionate, and was quite confident of being able to remove the tumour, the only issue is just whether he can get it all with clear margins which he won’t know until he goes in.

                                The worst case scenario is that in resecting and repairing, he might have to take some of the tissue that provides pace-making function in the heart, but if so he will put in a pacemaker to deal with this.

                                I am being admitted to hospital on Monday 8th for surgery on the 9th, about a 9 day stay then gentle recovery at home, hopefully well enough to start Ipi within a few weeks. Fingers crossed!

                                • July 9, 2013 at 2:52 am
                                awillett1991
                                Participant
                                  Good luck Ally! Will be thinking abt you and praying all goes well!

                                  Amy

                                  • July 9, 2013 at 2:52 am
                                  awillett1991
                                  Participant
                                    Good luck Ally! Will be thinking abt you and praying all goes well!

                                    Amy

                                    • July 9, 2013 at 2:52 am
                                    awillett1991
                                    Participant
                                      Good luck Ally! Will be thinking abt you and praying all goes well!

                                      Amy

                                      • July 2, 2013 at 2:09 am
                                      kylez
                                      Participant

                                        I hope those 'checkpoint blockade' drugs get their asses in gear and blockade the heck out of those cardiac mets for both of you.

                                        • July 2, 2013 at 2:09 am
                                        kylez
                                        Participant

                                          I hope those 'checkpoint blockade' drugs get their asses in gear and blockade the heck out of those cardiac mets for both of you.

                                          • July 2, 2013 at 2:09 am
                                          kylez
                                          Participant

                                            I hope those 'checkpoint blockade' drugs get their asses in gear and blockade the heck out of those cardiac mets for both of you.

                                            • July 3, 2013 at 10:21 pm
                                            POW
                                            Participant

                                              Ally, I'm so glad that you found a really good surgeon who is very confident that he can remove that oh so scary tumor. And to be able to schedule the surgery so quickly, too! That's wonderful. I will be praying for you next Tuesday and hope to hear very soon that you are solidly on the road to recovery. 

                                              • July 3, 2013 at 10:21 pm
                                              POW
                                              Participant

                                                Ally, I'm so glad that you found a really good surgeon who is very confident that he can remove that oh so scary tumor. And to be able to schedule the surgery so quickly, too! That's wonderful. I will be praying for you next Tuesday and hope to hear very soon that you are solidly on the road to recovery. 

                                                • July 3, 2013 at 10:21 pm
                                                POW
                                                Participant

                                                  Ally, I'm so glad that you found a really good surgeon who is very confident that he can remove that oh so scary tumor. And to be able to schedule the surgery so quickly, too! That's wonderful. I will be praying for you next Tuesday and hope to hear very soon that you are solidly on the road to recovery. 

                                                  • July 8, 2013 at 11:42 pm
                                                  POW
                                                  Participant

                                                    Ally-

                                                    Good luck with your surgery tomorrow. We're all wishing you a successful procedure and a speedy recovery! Hang in there, Tiger! smiley

                                                    • July 8, 2013 at 11:42 pm
                                                    POW
                                                    Participant

                                                      Ally-

                                                      Good luck with your surgery tomorrow. We're all wishing you a successful procedure and a speedy recovery! Hang in there, Tiger! smiley

                                                      • July 8, 2013 at 11:42 pm
                                                      POW
                                                      Participant

                                                        Ally-

                                                        Good luck with your surgery tomorrow. We're all wishing you a successful procedure and a speedy recovery! Hang in there, Tiger! smiley

                                                        • July 8, 2013 at 10:55 am
                                                        robertos
                                                        Participant

                                                          The American Heart Association is recommending that all athletes or those who are starting an organized sport should be screened for cardiovascular disease and any undiagnosed or unsuspected heart abnormalities once they reach high school age or beyond. Cardio

                                                          • July 8, 2013 at 10:55 am
                                                          robertos
                                                          Participant

                                                            The American Heart Association is recommending that all athletes or those who are starting an organized sport should be screened for cardiovascular disease and any undiagnosed or unsuspected heart abnormalities once they reach high school age or beyond. Cardio

                                                            • July 8, 2013 at 10:55 am
                                                            robertos
                                                            Participant

                                                              The American Heart Association is recommending that all athletes or those who are starting an organized sport should be screened for cardiovascular disease and any undiagnosed or unsuspected heart abnormalities once they reach high school age or beyond. Cardio

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