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Hopeful Scanxiety

Forums General Melanoma Community Hopeful Scanxiety

  • Post
    shellebrownies
    Participant

      Don is 2 weeks into his second 3 week cycle. His improvement since beginning the chemo has been remarkable–one might even call it miraculous.

      Don is 2 weeks into his second 3 week cycle. His improvement since beginning the chemo has been remarkable–one might even call it miraculous.

      The palpable tumor(s) under his right arm has gone from softball sized before the chemo to 2 marbles after 1st round and last Thursday he was down to one that was the size of a chickpea. His LDH number has come down from 2375 day of 1st chemo to 539 after 1st round and down to 388 on Thursday. His pain medicine regimen has been dropped from 10mg/3xday methadone to 7.5/3xday to 5/3xday to 5/2xday. And still, with all these changes, he has not had to use any breakthrough pain meds. 

      He had a 4 day period at the beginning of this 2nd round where he had some brutal vomiting, but since getting him the right meds to deal with it, his nausea has completely disappeared. He has much more energy, is eating normally. 

      Don goes in on Tuesday for a brain MRI (he hasn't had one in a while) and a CT scan of his torso. We will meet with Dr. Lawrence on Thursday to discuss the results and our plan of action from there.

      I have found myself at a bit of a loss. I have had kind of a difficult time switching gears from what we were facing to where we are now, and while it is almost impossible to not be hopeful in light of these changes, I do still worry about the durability of his response and just how much melanoma has really been beaten back by this treatment.

      I am hopeful that the scans will prove the huge response his other actions and tess seem to indicate, but, of course, I am experiencing some serious scanxiety. Everything seems so up in the air right now…I can't wait for some kind of answers, you know?

      Michelle, wife of Don

    Viewing 13 reply threads
    • Replies
        boot2aboot
        Participant

          fingers crossed…i want good news…i feel like i am shari, lisa and don's quadruplet…i want my sibs well…

          boota

          boot2aboot
          Participant

            fingers crossed…i want good news…i feel like i am shari, lisa and don's quadruplet…i want my sibs well…

            boota

            hope4cure1
            Participant

              Oh Michelle, I know just what you mean.  My husband started out with 4 liver mets, and 2 lymph nodes in the chest cavity.  He is going on his 16th week of chemo (carboplatin/abraxane/avastin)  At 6 weeks, everything was shrinking.  At 12 weeks, all but one lymph node had disappeared.  Of course, in 4 more weeks, we pray that the scans will be clear.  That would be great news, but I am right with you……reserved excitement….when's that other shoe going to drop?  In my heart, I know that kind of thinking is fruitless, and not helping my husband, who has an extremely positive attitude.  There have been two things that people have said that were helpful.  One  was when our doctor's assistant told us that they would be treating this as a chronic disease.  That gave me peace, understanding, and perhaps the strength to weather any future reoccurrences.  It helped me feel that they're "on It"…and we are too.  The other was something a close friend of ours, who is a doctor with Amgen, and familiar with the successes of the OncoVEX trial, told me to make sure to congratulate my husband on his positive attitude….that he, as a doctor, knows the difference this can make on a patient's prognosis.  That made me realize that supporting my husband's upbeat attitude is maybe one of the most important things I can do for him.  Michelle, I totlally understand the difficulty in "waiting for answers", but maybe if you ask yourself who or what your anticipatory worrying is helping, you can redirect your thinking to ways to brighten your husband's or someone else's day.  I'm not always so good at that, but it's worth a shot.  I hear you, sister!  We've got today, so what can we do to make to great?

              hope4cure1
              Participant

                Oh Michelle, I know just what you mean.  My husband started out with 4 liver mets, and 2 lymph nodes in the chest cavity.  He is going on his 16th week of chemo (carboplatin/abraxane/avastin)  At 6 weeks, everything was shrinking.  At 12 weeks, all but one lymph node had disappeared.  Of course, in 4 more weeks, we pray that the scans will be clear.  That would be great news, but I am right with you……reserved excitement….when's that other shoe going to drop?  In my heart, I know that kind of thinking is fruitless, and not helping my husband, who has an extremely positive attitude.  There have been two things that people have said that were helpful.  One  was when our doctor's assistant told us that they would be treating this as a chronic disease.  That gave me peace, understanding, and perhaps the strength to weather any future reoccurrences.  It helped me feel that they're "on It"…and we are too.  The other was something a close friend of ours, who is a doctor with Amgen, and familiar with the successes of the OncoVEX trial, told me to make sure to congratulate my husband on his positive attitude….that he, as a doctor, knows the difference this can make on a patient's prognosis.  That made me realize that supporting my husband's upbeat attitude is maybe one of the most important things I can do for him.  Michelle, I totlally understand the difficulty in "waiting for answers", but maybe if you ask yourself who or what your anticipatory worrying is helping, you can redirect your thinking to ways to brighten your husband's or someone else's day.  I'm not always so good at that, but it's worth a shot.  I hear you, sister!  We've got today, so what can we do to make to great?

                FormerCaregiver
                Participant

                  Michelle, it is a great sign that Don's tumours have reduced so much in size! The fact
                  that his nausea has gone away and he has not needed any breakthrough pain medication is
                  also very encouraging.

                  I know how you are probably feeling regarding the durability of response and just how much
                  melanoma has really been beaten back by this treatment. The problem with melanoma is that
                  it unlikely to be completely eradicated by the chemo. Unfortunately, it could return
                  quickly so there needs to be other treatments lined up that may be tried without delay if
                  this happens. Luckily, there are many more options available these days compared to a few
                  years ago.

                  I think that one way to reduce scanxiety is use the time to formulate plans B and C, while
                  considering how quickly these can be implemented if necessary.

                  Wishing Don good luck with the scans on Tuesday.

                  Take care

                  Frank from Australia

                    Lisa13
                    Participant

                      Michelle,

                      I truly hope the chemo continues to work for Don. It does work on a small amount of people and some very fortunate people have had complete, durable responses to it.   Everyone is very different and you have to believe that it will keep working.   A positive mind is half the battle 🙂  Melanoma is the beast, but we all know that each person responds differently and everyone's melanoma is different. 

                      I'm getting ready for my second chemo session with dacarbazine on Friday   I have no choice but to believe it will work for me – even if it's for a few months. I know there are likely a dozen other treatments in clinical trials that show promise and will be widely be used in the future. If the chemo can work long enough for those to become available, then that's enough.  I believe and we've all heard Stage 4 survivors can get through this disease for years using different treatments to keep this disease from progressing. 

                      I wish you both the best of luck and I hope Tuesdays scans prove to be good news.  If not, get a Plan B and C together like Frank suggested.  I have a whole list ready just in case, but I hope I don't have to use any of them for awhile and I hope the same for Don as well.

                      Lisa – Stage 4

                      Lisa13
                      Participant

                        Michelle,

                        I truly hope the chemo continues to work for Don. It does work on a small amount of people and some very fortunate people have had complete, durable responses to it.   Everyone is very different and you have to believe that it will keep working.   A positive mind is half the battle 🙂  Melanoma is the beast, but we all know that each person responds differently and everyone's melanoma is different. 

                        I'm getting ready for my second chemo session with dacarbazine on Friday   I have no choice but to believe it will work for me – even if it's for a few months. I know there are likely a dozen other treatments in clinical trials that show promise and will be widely be used in the future. If the chemo can work long enough for those to become available, then that's enough.  I believe and we've all heard Stage 4 survivors can get through this disease for years using different treatments to keep this disease from progressing. 

                        I wish you both the best of luck and I hope Tuesdays scans prove to be good news.  If not, get a Plan B and C together like Frank suggested.  I have a whole list ready just in case, but I hope I don't have to use any of them for awhile and I hope the same for Don as well.

                        Lisa – Stage 4

                      FormerCaregiver
                      Participant

                        Michelle, it is a great sign that Don's tumours have reduced so much in size! The fact
                        that his nausea has gone away and he has not needed any breakthrough pain medication is
                        also very encouraging.

                        I know how you are probably feeling regarding the durability of response and just how much
                        melanoma has really been beaten back by this treatment. The problem with melanoma is that
                        it unlikely to be completely eradicated by the chemo. Unfortunately, it could return
                        quickly so there needs to be other treatments lined up that may be tried without delay if
                        this happens. Luckily, there are many more options available these days compared to a few
                        years ago.

                        I think that one way to reduce scanxiety is use the time to formulate plans B and C, while
                        considering how quickly these can be implemented if necessary.

                        Wishing Don good luck with the scans on Tuesday.

                        Take care

                        Frank from Australia

                        LynnLuc
                        Participant

                          Being stage 4 and even being NED, I don't think I will ever breath a sigh of relief  for I know Melanoma has no cure and chances of it coming back are great. I am taking it one day at a time, scan to scan and praying for the best. We have to stay informed, on top of new treatments and live in this crazy altered state…It's really all we can do until a true cure is found.

                          LynnLuc
                          Participant

                            Being stage 4 and even being NED, I don't think I will ever breath a sigh of relief  for I know Melanoma has no cure and chances of it coming back are great. I am taking it one day at a time, scan to scan and praying for the best. We have to stay informed, on top of new treatments and live in this crazy altered state…It's really all we can do until a true cure is found.

                            Carol Taylor
                            Participant

                              Holding you and your Don in prayer and those scans also.

                              Oh Lord, thank You for what You're doing, and in Your mercy continue to be with Don and Michelle and bring some peace with these scans. Amen.

                              Grace and peace to you both,

                              Carol

                              Carol Taylor
                              Participant

                                Holding you and your Don in prayer and those scans also.

                                Oh Lord, thank You for what You're doing, and in Your mercy continue to be with Don and Michelle and bring some peace with these scans. Amen.

                                Grace and peace to you both,

                                Carol

                                cfw43716
                                Participant

                                  Carol you are wonderful………….I am so blessed to have you in my corner.  That and our Lords.

                                  cfw43716
                                  Participant

                                    Carol you are wonderful………….I am so blessed to have you in my corner.  That and our Lords.

                                    Banu
                                    Participant

                                      Hi Michelle,

                                      I am hoping and praying that you receive great scan results. You and Don are an inspiration to me and my father in fighting this disease. Thank you so much for sharing your experiences.

                                      Banu
                                      Participant

                                        Hi Michelle,

                                        I am hoping and praying that you receive great scan results. You and Don are an inspiration to me and my father in fighting this disease. Thank you so much for sharing your experiences.

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