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PET Results…………….good laced with not so hot.

Forums General Melanoma Community PET Results…………….good laced with not so hot.

  • Post
    Rita and Charles
    Participant

      No one prepares you for the exhaustion of month to month anticipation, visits, results.  I am the patients wife, so this is my perspective and I imagine how amplified everything is for the loved one with melanoma. I sometimes think that if I chronicle here, it helps……..keeps track of dates and resulte as days blend into days.

      Findings:

      Right mid lobe nodule has continued to respond to BRAF combo – now only 3×4 mm from June 2.1 cm – yay! 

      Small sub centimeter lymphadenopathy in the axilary region remains the same since June, still showing uptake but stable.  Significant precarinal lymph node measuring 1.9×1 cm has not decreased and the level of fdg uptake has not increased.  Still stable.

      NEW – nodular changes at the left lung base measuring 0.8×1.0 cm, limited fdg uptake but will need to be watched closely on next CT for changes.

      So roller coaster continues, hopes up, hopes dimmed, and a new lung node to be potentially brought into the mix.

      So, if anyone has any thoughts – share. I feel like the stories I hear with some are so intense, that our "stable" is something we should cling too, not complain about……………

      Thanks, Rita

    Viewing 11 reply threads
    • Replies
        Scooby123
        Participant

          I Rita and Charles,

          I feel myself few weeks scans are due I have bad sleeps upset stomach . You pray for good or stable control. My scans are booked in now for 29th February will not get results till 24th march so a long 6 weeks this is going to be. I pray for some shrinkage after ippi my scans have been stable last 2 times but no shrinkage. I have a lot of pain in my ribs and kidneys at moment had bloods test . Bloods ok but water test blood in it and white cells so now having a different scan for that too. I was told by my consultant that the pain in rib area could be ippi inflamation but does not show in my blood test for inflamation. 

          Personally I think we all would like shrinkage and ned , but stable is ok for me . I am not braf so ippi my first treatment which did well on it but hoping my discomfort at present is due to late side effects and not more mel.

          wishing you and Charles the best and prayers for us all

          scooby123❤️

          just to say had 50% reduction after treatment finished but no more shrinkage on other 2 scans .

           

           

           

           

           

          Scooby123
          Participant

            I Rita and Charles,

            I feel myself few weeks scans are due I have bad sleeps upset stomach . You pray for good or stable control. My scans are booked in now for 29th February will not get results till 24th march so a long 6 weeks this is going to be. I pray for some shrinkage after ippi my scans have been stable last 2 times but no shrinkage. I have a lot of pain in my ribs and kidneys at moment had bloods test . Bloods ok but water test blood in it and white cells so now having a different scan for that too. I was told by my consultant that the pain in rib area could be ippi inflamation but does not show in my blood test for inflamation. 

            Personally I think we all would like shrinkage and ned , but stable is ok for me . I am not braf so ippi my first treatment which did well on it but hoping my discomfort at present is due to late side effects and not more mel.

            wishing you and Charles the best and prayers for us all

            scooby123❤️

            just to say had 50% reduction after treatment finished but no more shrinkage on other 2 scans .

             

             

             

             

             

            Scooby123
            Participant

              I Rita and Charles,

              I feel myself few weeks scans are due I have bad sleeps upset stomach . You pray for good or stable control. My scans are booked in now for 29th February will not get results till 24th march so a long 6 weeks this is going to be. I pray for some shrinkage after ippi my scans have been stable last 2 times but no shrinkage. I have a lot of pain in my ribs and kidneys at moment had bloods test . Bloods ok but water test blood in it and white cells so now having a different scan for that too. I was told by my consultant that the pain in rib area could be ippi inflamation but does not show in my blood test for inflamation. 

              Personally I think we all would like shrinkage and ned , but stable is ok for me . I am not braf so ippi my first treatment which did well on it but hoping my discomfort at present is due to late side effects and not more mel.

              wishing you and Charles the best and prayers for us all

              scooby123❤️

              just to say had 50% reduction after treatment finished but no more shrinkage on other 2 scans .

               

               

               

               

               

              Jubes
              Participant

                Hi Rita. 

                Congratulations on the good part of the results. Obviously there is always the concern when something new shows up. Hopefully they will watch carefully and have a plan ready! 

                I just wanted to say that I really empathise with you on the roller coaster ride. Even though so far all is going the right direction for me, I was not really prepared for the type of time commitment all the tests and appointments take. I am now seeing 9 specialists, endocrinologist,dermatologist, oncologist, cardio thoracic surgeon, rheumatologist, ophthalmologist (screening for  plaquenil use) and respiratory specialist ( I am now on isoniazid for possible TB exposure so I can get remicade for my spondylitis) and it seems every day is at least a blood test if not scan or Drs visit. And that for 2 years in June!! The problem is keeping them all on the same page as I now have 9 medications every day and if I were not on the look out some of them would be doubled up. Fortunately I have the worlds best oncologists and I can text them any time. So far I have had a response within 10 minutes every time. I try not to bother them unless it looks like a side effect or one of the other doctors is unavailable

                sorry that was so long Rita…. I got on a roll… What I wanted to say is that the best thing my husband and I have done is go on lots of short holidays together. It's been wonderful and takes your mind off the waiting

                wishing you and Charles the best

                anne-Louise 

                Jubes
                Participant

                  Hi Rita. 

                  Congratulations on the good part of the results. Obviously there is always the concern when something new shows up. Hopefully they will watch carefully and have a plan ready! 

                  I just wanted to say that I really empathise with you on the roller coaster ride. Even though so far all is going the right direction for me, I was not really prepared for the type of time commitment all the tests and appointments take. I am now seeing 9 specialists, endocrinologist,dermatologist, oncologist, cardio thoracic surgeon, rheumatologist, ophthalmologist (screening for  plaquenil use) and respiratory specialist ( I am now on isoniazid for possible TB exposure so I can get remicade for my spondylitis) and it seems every day is at least a blood test if not scan or Drs visit. And that for 2 years in June!! The problem is keeping them all on the same page as I now have 9 medications every day and if I were not on the look out some of them would be doubled up. Fortunately I have the worlds best oncologists and I can text them any time. So far I have had a response within 10 minutes every time. I try not to bother them unless it looks like a side effect or one of the other doctors is unavailable

                  sorry that was so long Rita…. I got on a roll… What I wanted to say is that the best thing my husband and I have done is go on lots of short holidays together. It's been wonderful and takes your mind off the waiting

                  wishing you and Charles the best

                  anne-Louise 

                    Rita and Charles
                    Participant

                      Good point Anne……………..gather ye rosebuds while ye may?  We have a trip in April planned that we are counting down the days!

                       

                      Rita and Charles
                      Participant

                        Good point Anne……………..gather ye rosebuds while ye may?  We have a trip in April planned that we are counting down the days!

                         

                        Rita and Charles
                        Participant

                          Good point Anne……………..gather ye rosebuds while ye may?  We have a trip in April planned that we are counting down the days!

                           

                        Jubes
                        Participant

                          Hi Rita. 

                          Congratulations on the good part of the results. Obviously there is always the concern when something new shows up. Hopefully they will watch carefully and have a plan ready! 

                          I just wanted to say that I really empathise with you on the roller coaster ride. Even though so far all is going the right direction for me, I was not really prepared for the type of time commitment all the tests and appointments take. I am now seeing 9 specialists, endocrinologist,dermatologist, oncologist, cardio thoracic surgeon, rheumatologist, ophthalmologist (screening for  plaquenil use) and respiratory specialist ( I am now on isoniazid for possible TB exposure so I can get remicade for my spondylitis) and it seems every day is at least a blood test if not scan or Drs visit. And that for 2 years in June!! The problem is keeping them all on the same page as I now have 9 medications every day and if I were not on the look out some of them would be doubled up. Fortunately I have the worlds best oncologists and I can text them any time. So far I have had a response within 10 minutes every time. I try not to bother them unless it looks like a side effect or one of the other doctors is unavailable

                          sorry that was so long Rita…. I got on a roll… What I wanted to say is that the best thing my husband and I have done is go on lots of short holidays together. It's been wonderful and takes your mind off the waiting

                          wishing you and Charles the best

                          anne-Louise 

                          Mat
                          Participant

                            Consider using this minor progression to switch to immunotherapy, eg, ipi/nivolumab, or pembro or nivolumab alone.  Good luck.

                            Mat
                            Participant

                              Consider using this minor progression to switch to immunotherapy, eg, ipi/nivolumab, or pembro or nivolumab alone.  Good luck.

                              Mat
                              Participant

                                Consider using this minor progression to switch to immunotherapy, eg, ipi/nivolumab, or pembro or nivolumab alone.  Good luck.

                                KimW
                                Participant

                                  Hi Rita! I am also the caring wife in this journey so I understand your fears and concerns. It sounds like (just from things I've read on others posts) that stable is good. I'm hoping the new finding stays small and stable too. Just curious as to what they said about the LDL levels that climbed? My husband's has done that too. His started out in the low 300's and was at 405 in December. So far he has had no treatment (stage 3b -intransits). The scans and doctor visits are just so stressful as is this disease. My husband has a rash on his chest that normally one would think maybe allergy or detergent change, etc. but of course, I'm worrying it's related to melanoma, as we do about every change. Hoping you are doing ok and having a happy Valentine's Day! 

                                  KimW
                                  Participant

                                    Hi Rita! I am also the caring wife in this journey so I understand your fears and concerns. It sounds like (just from things I've read on others posts) that stable is good. I'm hoping the new finding stays small and stable too. Just curious as to what they said about the LDL levels that climbed? My husband's has done that too. His started out in the low 300's and was at 405 in December. So far he has had no treatment (stage 3b -intransits). The scans and doctor visits are just so stressful as is this disease. My husband has a rash on his chest that normally one would think maybe allergy or detergent change, etc. but of course, I'm worrying it's related to melanoma, as we do about every change. Hoping you are doing ok and having a happy Valentine's Day! 

                                      Rita and Charles
                                      Participant

                                        Hey Kim, Charles' LDL levels did jump from around high 300s to 550 n the last test………….our onc still said that we shouldn't worry about that number, other things affect it and it is still in the range of high but not out of normal "high" if that makes sense?  Before Charles was diaganosed, for MONTHS he had terrble red spots all over his legs – then chest. We went to the Derm so many times, so many biopsy results, we went to a rheumatologists……….no one could explain the spots. At times they itched really really bad.Finally a rheumatologist prescribed prednisone that worked. Then, by a fluke x ray we found the right tumor and the road to melanomaville began.

                                        Since he has been on the BRAF Combo, his spots flare up and go, now on his face as well. He was just prescribed a new antibiotic that has really helped, and if it realy flares – more prednisone.

                                        When we got his 2nd opinion after the biopsy result of metastaticmelanoma, the one melanoma specialists looked at Charles – who at that time was covered in spots, remarked that he was "immune twitchy" that the spots were immunological in origon but no one could explain it.  That was one reason we went with BRAF combo to start rather than immune therapy – if  his immune system was already kicking up a storm his response might have been difficult.

                                        Sorry, i wish i had better answers – now they say the spots are part of the side effect and we manage them, but no one wants to figure our or could figure out why he had the spots for 6 months before he was diagnosed…………

                                        We did switch detergents to all chemical free, every little bit helps.  Has he been to the Dermotogist to look at the spots?

                                         

                                        Rita – good luck!

                                        Rita and Charles
                                        Participant

                                          Hey Kim, Charles' LDL levels did jump from around high 300s to 550 n the last test………….our onc still said that we shouldn't worry about that number, other things affect it and it is still in the range of high but not out of normal "high" if that makes sense?  Before Charles was diaganosed, for MONTHS he had terrble red spots all over his legs – then chest. We went to the Derm so many times, so many biopsy results, we went to a rheumatologists……….no one could explain the spots. At times they itched really really bad.Finally a rheumatologist prescribed prednisone that worked. Then, by a fluke x ray we found the right tumor and the road to melanomaville began.

                                          Since he has been on the BRAF Combo, his spots flare up and go, now on his face as well. He was just prescribed a new antibiotic that has really helped, and if it realy flares – more prednisone.

                                          When we got his 2nd opinion after the biopsy result of metastaticmelanoma, the one melanoma specialists looked at Charles – who at that time was covered in spots, remarked that he was "immune twitchy" that the spots were immunological in origon but no one could explain it.  That was one reason we went with BRAF combo to start rather than immune therapy – if  his immune system was already kicking up a storm his response might have been difficult.

                                          Sorry, i wish i had better answers – now they say the spots are part of the side effect and we manage them, but no one wants to figure our or could figure out why he had the spots for 6 months before he was diagnosed…………

                                          We did switch detergents to all chemical free, every little bit helps.  Has he been to the Dermotogist to look at the spots?

                                           

                                          Rita – good luck!

                                          KimW
                                          Participant

                                            Thanks for sharing your information on the red spots. We haven't been to the dermatologist for this yet, since it just started about 2 weeks ago and Marshall seems to think it's getting better. He has so many freckles, moles, spots of every color from sun damage over the years that it's hard to see this rash in between everything else. He said it itched at first, but not now. He just assumed it was maybe too much detergent that wasn't wrinsed enough or something since it's only on his chest and belly. Of course, my mind isn't that eased by thinking that- I immediately start trying to find something similar online and then diagnose him with lymphoma or leukemia! Reading dr. Google can scare you to earth and I'm trying so hard to not "go there."  I will contact his doctors this week to see what they say. I'm sure they will want to look at it. You see tons of information on rashes as side effects from treatments but not as much with no treatments. Sorry they never figured out the cause on the spots that Charles suffers with but glad the meds help! Did they discover one of his spots to be the primary or was his lung spots the first diagnosis? Just curious! You mentioned the X-ray but I wasn't sure if it detected the skin spot or lung. Thanks for sharing your knowledge! So nice to have this resource and know that we can all help each other with our different experiences. Take care! Kim

                                            KimW
                                            Participant

                                              Thanks for sharing your information on the red spots. We haven't been to the dermatologist for this yet, since it just started about 2 weeks ago and Marshall seems to think it's getting better. He has so many freckles, moles, spots of every color from sun damage over the years that it's hard to see this rash in between everything else. He said it itched at first, but not now. He just assumed it was maybe too much detergent that wasn't wrinsed enough or something since it's only on his chest and belly. Of course, my mind isn't that eased by thinking that- I immediately start trying to find something similar online and then diagnose him with lymphoma or leukemia! Reading dr. Google can scare you to earth and I'm trying so hard to not "go there."  I will contact his doctors this week to see what they say. I'm sure they will want to look at it. You see tons of information on rashes as side effects from treatments but not as much with no treatments. Sorry they never figured out the cause on the spots that Charles suffers with but glad the meds help! Did they discover one of his spots to be the primary or was his lung spots the first diagnosis? Just curious! You mentioned the X-ray but I wasn't sure if it detected the skin spot or lung. Thanks for sharing your knowledge! So nice to have this resource and know that we can all help each other with our different experiences. Take care! Kim

                                              Rita and Charles
                                              Participant

                                                They never did diagnose what the cause of the spots, in my un-doctor mind I think that it must have been his immune system flaring up becuase it knew long before we did that something was going on inside the body.  That is my idea and not coorobrated by any doctor – except the melanoma specialist who labeled him "immune twitchy".  10 years ago, he had a primary remvoved from his arm, and no other treatment.  He went in for an xray of his back and that is when they first spotted the rigth lung nodule,, which led to biopsy, to pet scan to diagnosis stage 4 melanoma………………….keep an eye on the spots and it never hurts to see a derm. At first they gave Charles loads of steroid creams that didn't do much.  The prednisone did, and now he is also on antibiotic and they come and go.

                                                 

                                                Good luck,

                                                Rita

                                                Rita and Charles
                                                Participant

                                                  They never did diagnose what the cause of the spots, in my un-doctor mind I think that it must have been his immune system flaring up becuase it knew long before we did that something was going on inside the body.  That is my idea and not coorobrated by any doctor – except the melanoma specialist who labeled him "immune twitchy".  10 years ago, he had a primary remvoved from his arm, and no other treatment.  He went in for an xray of his back and that is when they first spotted the rigth lung nodule,, which led to biopsy, to pet scan to diagnosis stage 4 melanoma………………….keep an eye on the spots and it never hurts to see a derm. At first they gave Charles loads of steroid creams that didn't do much.  The prednisone did, and now he is also on antibiotic and they come and go.

                                                   

                                                  Good luck,

                                                  Rita

                                                  Rita and Charles
                                                  Participant

                                                    They never did diagnose what the cause of the spots, in my un-doctor mind I think that it must have been his immune system flaring up becuase it knew long before we did that something was going on inside the body.  That is my idea and not coorobrated by any doctor – except the melanoma specialist who labeled him "immune twitchy".  10 years ago, he had a primary remvoved from his arm, and no other treatment.  He went in for an xray of his back and that is when they first spotted the rigth lung nodule,, which led to biopsy, to pet scan to diagnosis stage 4 melanoma………………….keep an eye on the spots and it never hurts to see a derm. At first they gave Charles loads of steroid creams that didn't do much.  The prednisone did, and now he is also on antibiotic and they come and go.

                                                     

                                                    Good luck,

                                                    Rita

                                                    KimW
                                                    Participant

                                                      Thanks for sharing your information on the red spots. We haven't been to the dermatologist for this yet, since it just started about 2 weeks ago and Marshall seems to think it's getting better. He has so many freckles, moles, spots of every color from sun damage over the years that it's hard to see this rash in between everything else. He said it itched at first, but not now. He just assumed it was maybe too much detergent that wasn't wrinsed enough or something since it's only on his chest and belly. Of course, my mind isn't that eased by thinking that- I immediately start trying to find something similar online and then diagnose him with lymphoma or leukemia! Reading dr. Google can scare you to earth and I'm trying so hard to not "go there."  I will contact his doctors this week to see what they say. I'm sure they will want to look at it. You see tons of information on rashes as side effects from treatments but not as much with no treatments. Sorry they never figured out the cause on the spots that Charles suffers with but glad the meds help! Did they discover one of his spots to be the primary or was his lung spots the first diagnosis? Just curious! You mentioned the X-ray but I wasn't sure if it detected the skin spot or lung. Thanks for sharing your knowledge! So nice to have this resource and know that we can all help each other with our different experiences. Take care! Kim

                                                      KimW
                                                      Participant

                                                        Thanks for sharing your information on the red spots. We haven't been to the dermatologist for this yet, since it just started about 2 weeks ago and Marshall seems to think it's getting better. He has so many freckles, moles, spots of every color from sun damage over the years that it's hard to see this rash in between everything else. He said it itched at first, but not now. He just assumed it was maybe too much detergent that wasn't wrinsed enough or something since it's only on his chest and belly. Of course, my mind isn't that eased by thinking that- I immediately start trying to find something similar online and then diagnose him with lymphoma or leukemia! Reading dr. Google can scare you to earth and I'm trying so hard to not "go there."  I will contact his doctors this week to see what they say. I'm sure they will want to look at it. You see tons of information on rashes as side effects from treatments but not as much with no treatments. Sorry they never figured out the cause on the spots that Charles suffers with but glad the meds help! Did they discover one of his spots to be the primary or was his lung spots the first diagnosis? Just curious! You mentioned the X-ray but I wasn't sure if it detected the skin spot or lung. Thanks for sharing your knowledge! So nice to have this resource and know that we can all help each other with our different experiences. Take care! Kim

                                                        KimW
                                                        Participant

                                                          Thanks for sharing your information on the red spots. We haven't been to the dermatologist for this yet, since it just started about 2 weeks ago and Marshall seems to think it's getting better. He has so many freckles, moles, spots of every color from sun damage over the years that it's hard to see this rash in between everything else. He said it itched at first, but not now. He just assumed it was maybe too much detergent that wasn't wrinsed enough or something since it's only on his chest and belly. Of course, my mind isn't that eased by thinking that- I immediately start trying to find something similar online and then diagnose him with lymphoma or leukemia! Reading dr. Google can scare you to earth and I'm trying so hard to not "go there."  I will contact his doctors this week to see what they say. I'm sure they will want to look at it. You see tons of information on rashes as side effects from treatments but not as much with no treatments. Sorry they never figured out the cause on the spots that Charles suffers with but glad the meds help! Did they discover one of his spots to be the primary or was his lung spots the first diagnosis? Just curious! You mentioned the X-ray but I wasn't sure if it detected the skin spot or lung. Thanks for sharing your knowledge! So nice to have this resource and know that we can all help each other with our different experiences. Take care! Kim

                                                          KimW
                                                          Participant

                                                            Thanks for sharing your information on the red spots. We haven't been to the dermatologist for this yet, since it just started about 2 weeks ago and Marshall seems to think it's getting better. He has so many freckles, moles, spots of every color from sun damage over the years that it's hard to see this rash in between everything else. He said it itched at first, but not now. He just assumed it was maybe too much detergent that wasn't wrinsed enough or something since it's only on his chest and belly. Of course, my mind isn't that eased by thinking that- I immediately start trying to find something similar online and then diagnose him with lymphoma or leukemia! Reading dr. Google can scare you to earth and I'm trying so hard to not "go there."  I will contact his doctors this week to see what they say. I'm sure they will want to look at it. You see tons of information on rashes as side effects from treatments but not as much with no treatments. Sorry they never figured out the cause on the spots that Charles suffers with but glad the meds help! Did they discover one of his spots to be the primary or was his lung spots the first diagnosis? Just curious! You mentioned the X-ray but I wasn't sure if it detected the skin spot or lung. Thanks for sharing your knowledge! So nice to have this resource and know that we can all help each other with our different experiences. Take care! Kim

                                                            Rita and Charles
                                                            Participant

                                                              Hey Kim, Charles' LDL levels did jump from around high 300s to 550 n the last test………….our onc still said that we shouldn't worry about that number, other things affect it and it is still in the range of high but not out of normal "high" if that makes sense?  Before Charles was diaganosed, for MONTHS he had terrble red spots all over his legs – then chest. We went to the Derm so many times, so many biopsy results, we went to a rheumatologists……….no one could explain the spots. At times they itched really really bad.Finally a rheumatologist prescribed prednisone that worked. Then, by a fluke x ray we found the right tumor and the road to melanomaville began.

                                                              Since he has been on the BRAF Combo, his spots flare up and go, now on his face as well. He was just prescribed a new antibiotic that has really helped, and if it realy flares – more prednisone.

                                                              When we got his 2nd opinion after the biopsy result of metastaticmelanoma, the one melanoma specialists looked at Charles – who at that time was covered in spots, remarked that he was "immune twitchy" that the spots were immunological in origon but no one could explain it.  That was one reason we went with BRAF combo to start rather than immune therapy – if  his immune system was already kicking up a storm his response might have been difficult.

                                                              Sorry, i wish i had better answers – now they say the spots are part of the side effect and we manage them, but no one wants to figure our or could figure out why he had the spots for 6 months before he was diagnosed…………

                                                              We did switch detergents to all chemical free, every little bit helps.  Has he been to the Dermotogist to look at the spots?

                                                               

                                                              Rita – good luck!

                                                            KimW
                                                            Participant

                                                              Hi Rita! I am also the caring wife in this journey so I understand your fears and concerns. It sounds like (just from things I've read on others posts) that stable is good. I'm hoping the new finding stays small and stable too. Just curious as to what they said about the LDL levels that climbed? My husband's has done that too. His started out in the low 300's and was at 405 in December. So far he has had no treatment (stage 3b -intransits). The scans and doctor visits are just so stressful as is this disease. My husband has a rash on his chest that normally one would think maybe allergy or detergent change, etc. but of course, I'm worrying it's related to melanoma, as we do about every change. Hoping you are doing ok and having a happy Valentine's Day! 

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