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Update after re visit consultant

Forums General Melanoma Community Update after re visit consultant

  • Post
    Scooby123
    Participant

      Hi All hope you all doing has good as can be.

      i had appointment today 3 weeks prior last appointment which should have been to re book my head and body scan in. I was told they want to scan me in 6 months not 3 months due to I have been stable on ippi for a year if you can say that after having one progress in my brain this March ?. I know most get scanned every 3 months. I did ask why leave me that long. I was told they feel because I have been stable that is why. I have not had treatment since last June 2015 apart from treatment for the brain. Plus do have o say she said we could scan you every 3 months then on 4 month some thing happens.

      i have 2 questions if anyone can help first one is how long has anyone been stable and how often they get scanned.

      if you are stage 4 do you get your moles still checked , I was told off my consultant he is more concerned what's going on inside my body than out, but if you had any more melanomas on skin surely you have them off or does treatment treat on surface of skin too. 

      Sorry for going on but was just on my mind.

      scooby 

    Viewing 5 reply threads
    • Replies
        Polymath
        Participant

          Hey Scooby,

          Good to hear from you.  You have not posted in a while (although you posted anon this time).

          I don't like the idea of this gap in scans.  Sounds like insurance may be giving the doc's a problem.  The main part of my objection is the fact that there is no way to know you are stable without the scan.  I've had more than my fair share of tumors, and unless they are sub-Q's, where you know you have something, the internal ones, even large ones really go unnoticed and don't necessarily produce any symptoms.  Good that you appear to be stable, but I say the squeaky wheel gets the oil.  Push for quarterly scans at this point in your treatment.  Skin checks will remain important even though multiple primaries seem fairly rare.  At this point I say if anything looks even a little suspicious, when in doubt, cut it out.  Best to you in the battle.

          Gary

          Polymath
          Participant

            Hey Scooby,

            Good to hear from you.  You have not posted in a while (although you posted anon this time).

            I don't like the idea of this gap in scans.  Sounds like insurance may be giving the doc's a problem.  The main part of my objection is the fact that there is no way to know you are stable without the scan.  I've had more than my fair share of tumors, and unless they are sub-Q's, where you know you have something, the internal ones, even large ones really go unnoticed and don't necessarily produce any symptoms.  Good that you appear to be stable, but I say the squeaky wheel gets the oil.  Push for quarterly scans at this point in your treatment.  Skin checks will remain important even though multiple primaries seem fairly rare.  At this point I say if anything looks even a little suspicious, when in doubt, cut it out.  Best to you in the battle.

            Gary

              Scooby123
              Participant

                Hi Gary ,

                Thanks for message and I did not mean to post anon I pressed post before clicking it off lol lol. The last 2 visits have not been with my consultant .

                Hope you ok and doing well x

                scooby  x

                 

                Scooby123
                Participant

                  Hi Gary ,

                  Thanks for message and I did not mean to post anon I pressed post before clicking it off lol lol. The last 2 visits have not been with my consultant .

                  Hope you ok and doing well x

                  scooby  x

                   

                  Scooby123
                  Participant

                    Hi Gary ,

                    Thanks for message and I did not mean to post anon I pressed post before clicking it off lol lol. The last 2 visits have not been with my consultant .

                    Hope you ok and doing well x

                    scooby  x

                     

                  Polymath
                  Participant

                    Hey Scooby,

                    Good to hear from you.  You have not posted in a while (although you posted anon this time).

                    I don't like the idea of this gap in scans.  Sounds like insurance may be giving the doc's a problem.  The main part of my objection is the fact that there is no way to know you are stable without the scan.  I've had more than my fair share of tumors, and unless they are sub-Q's, where you know you have something, the internal ones, even large ones really go unnoticed and don't necessarily produce any symptoms.  Good that you appear to be stable, but I say the squeaky wheel gets the oil.  Push for quarterly scans at this point in your treatment.  Skin checks will remain important even though multiple primaries seem fairly rare.  At this point I say if anything looks even a little suspicious, when in doubt, cut it out.  Best to you in the battle.

                    Gary

                    MoiraM
                    Participant

                      As you know, I am also in the UK. I had ipi April – June 2015.

                      I have been classified as a 'complete responder' and was moved from 3 monthly scans to 4 monthly scans in April 2016. I think the plan is 6 monthly scans from April 2017 but I confess that I will take an early move to that if it is offered in January 2017.

                      I've never had a mole/skin check so I cannot comment on that. My phobia means that I stay at one end of the room with my clothes on and the doctor stays at the other.

                      I think being stage 4 (or unresectable stage 3 in my case) means that a second primary is not their greatest concern. I guess that they would say that the whole point of being so vigilant about moles is to stop the melanoma cells getting to the rest of the body and we are past that stage.

                      I do think the ipi affected almost all my moles. Many are much paler. Of the ones I can see, only one tiny one on my leg has remained dark brown.

                       

                      MoiraM
                      Participant

                        As you know, I am also in the UK. I had ipi April – June 2015.

                        I have been classified as a 'complete responder' and was moved from 3 monthly scans to 4 monthly scans in April 2016. I think the plan is 6 monthly scans from April 2017 but I confess that I will take an early move to that if it is offered in January 2017.

                        I've never had a mole/skin check so I cannot comment on that. My phobia means that I stay at one end of the room with my clothes on and the doctor stays at the other.

                        I think being stage 4 (or unresectable stage 3 in my case) means that a second primary is not their greatest concern. I guess that they would say that the whole point of being so vigilant about moles is to stop the melanoma cells getting to the rest of the body and we are past that stage.

                        I do think the ipi affected almost all my moles. Many are much paler. Of the ones I can see, only one tiny one on my leg has remained dark brown.

                         

                          Scooby123
                          Participant

                            Hi MoiraM

                            Glad you ok Hun, I do think 6 months long time in my case I have only had one head scan after tumour in brain to see if treatment had worked. I had no issue at all was only picked up due to 3 month scans . It is so hard to know what's best but I feel in my position 6 months is too long . 

                            Scooby x

                            Scooby123
                            Participant

                              Hi MoiraM

                              Glad you ok Hun, I do think 6 months long time in my case I have only had one head scan after tumour in brain to see if treatment had worked. I had no issue at all was only picked up due to 3 month scans . It is so hard to know what's best but I feel in my position 6 months is too long . 

                              Scooby x

                              Scooby123
                              Participant

                                Hi MoiraM

                                Glad you ok Hun, I do think 6 months long time in my case I have only had one head scan after tumour in brain to see if treatment had worked. I had no issue at all was only picked up due to 3 month scans . It is so hard to know what's best but I feel in my position 6 months is too long . 

                                Scooby x

                              MoiraM
                              Participant

                                As you know, I am also in the UK. I had ipi April – June 2015.

                                I have been classified as a 'complete responder' and was moved from 3 monthly scans to 4 monthly scans in April 2016. I think the plan is 6 monthly scans from April 2017 but I confess that I will take an early move to that if it is offered in January 2017.

                                I've never had a mole/skin check so I cannot comment on that. My phobia means that I stay at one end of the room with my clothes on and the doctor stays at the other.

                                I think being stage 4 (or unresectable stage 3 in my case) means that a second primary is not their greatest concern. I guess that they would say that the whole point of being so vigilant about moles is to stop the melanoma cells getting to the rest of the body and we are past that stage.

                                I do think the ipi affected almost all my moles. Many are much paler. Of the ones I can see, only one tiny one on my leg has remained dark brown.

                                 

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