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Stable scans and some interesting points from the consultation

Forums General Melanoma Community Stable scans and some interesting points from the consultation

  • Post
    MoiraM
    Participant

      I went for my quarterly scan result and consultation today. The CT scans show no change, which is good news. The shurnk tumours have stayed shrunk. The 'mass' on my abdomen wall that did not light up in the PET scan and is therefore considered not melanoma is still the same size it has been since my first CT scan in February 2015.

      I have been moved from 3 monthly checks to 4 monthly checks. Hurrah.

      My oncologist mentioned the studies about gut flora increasing the effectiveness of Ipi that were in the news in November 2015 and discussed on this board at that time and in February of this year. She asked me if I had been taking a probiotic during Ipi treatment April/May/June 2015 (which I wasn't).

      She also said that they were probably going to start having a clinic for people like me, who have parts of their endocrine system that have packed up because of immunotherapy to treat cancer. 

      {I am in the UK and my treatment is funded by the NHS. I am stage 3C, too phobic of doctors/hosiptals to have a partial or complete lymph node dissection and treated by Ipi UK style [four treatments, 3mg/kg]. I was a responder but my anterior pituitary gland packed up [no signals going to thyroid = no thyroxine, no signals going to adrenal cortex = no cortisol, shutdown of my reproductive systems [which were well on the way out as I am 56]. Also my gut has never really returned to normal but who knows why.}

    Viewing 17 reply threads
    • Replies
        WithinMySkin
        Participant
          Stable is great news, Moira!! Hurrah! What exactly would the endocrine clinic provide, I wonder? Sending hugs across the pond!
            MoiraM
            Participant

              I think from the hospital's point of view it might be about seeing that this is a upcoming area of neeed and being ready for it. Or it maybe that the endocrine team are interested and want to become a centre of excellence.

              Them becoming a centre of excellence would be great as they have not coped with me very well so far.

              In my case, the melanoma team 'handed me over' to the endocrine team for treatment. The doctors there are OK but the nurses have struggled. I think the problems are:

              (a) The endocrine nurses and some of the doctors are not used to dealing with patients who have cancer. They get all flustered when I bring up melanoma but pretend they aren't and become officious. Their 'bedside manner' could do with a lot of work.

              (b) Their whole philosophy is to give replacement hormones in a way that mimic the physiological levels and they are obsessed with 'long time side effects'. Having people go on and on about 'long term side effects' when you are focused on still being being here in three years' time is more than frustrating. 

              (c) They did not cope at all well with questions like, "Is there any chance my pituitary gland will recover?" or "My should I bother with moving to hydrocortisone when I am finally on a daily dose of prendisolone that is working for me?" My running hypothesis is that most of their patients are just focused on getting out the door and not having to see them for another 3 months.

              I do not think it is a good sign that all the Type I diabetics I know hate going to the hospital and try to manage their condition through their GPs (general practitioners) or even their specialist diabetic nurse.

              Also pituitary problems are not that common. Their literature was terrible. They had no procedures for explaining things – it took nine months before anyone realised that no one had told me that I shouldn't take my prednisolone on the morning of a blood test.

              In the end I did my own research and read everything the society for people with Addison's produces because someone with Addisons has no adrenal cortext function, like me. Finally some clarity!

              MoiraM
              Participant

                I think from the hospital's point of view it might be about seeing that this is a upcoming area of neeed and being ready for it. Or it maybe that the endocrine team are interested and want to become a centre of excellence.

                Them becoming a centre of excellence would be great as they have not coped with me very well so far.

                In my case, the melanoma team 'handed me over' to the endocrine team for treatment. The doctors there are OK but the nurses have struggled. I think the problems are:

                (a) The endocrine nurses and some of the doctors are not used to dealing with patients who have cancer. They get all flustered when I bring up melanoma but pretend they aren't and become officious. Their 'bedside manner' could do with a lot of work.

                (b) Their whole philosophy is to give replacement hormones in a way that mimic the physiological levels and they are obsessed with 'long time side effects'. Having people go on and on about 'long term side effects' when you are focused on still being being here in three years' time is more than frustrating. 

                (c) They did not cope at all well with questions like, "Is there any chance my pituitary gland will recover?" or "My should I bother with moving to hydrocortisone when I am finally on a daily dose of prendisolone that is working for me?" My running hypothesis is that most of their patients are just focused on getting out the door and not having to see them for another 3 months.

                I do not think it is a good sign that all the Type I diabetics I know hate going to the hospital and try to manage their condition through their GPs (general practitioners) or even their specialist diabetic nurse.

                Also pituitary problems are not that common. Their literature was terrible. They had no procedures for explaining things – it took nine months before anyone realised that no one had told me that I shouldn't take my prednisolone on the morning of a blood test.

                In the end I did my own research and read everything the society for people with Addison's produces because someone with Addisons has no adrenal cortext function, like me. Finally some clarity!

                MoiraM
                Participant

                  I think from the hospital's point of view it might be about seeing that this is a upcoming area of neeed and being ready for it. Or it maybe that the endocrine team are interested and want to become a centre of excellence.

                  Them becoming a centre of excellence would be great as they have not coped with me very well so far.

                  In my case, the melanoma team 'handed me over' to the endocrine team for treatment. The doctors there are OK but the nurses have struggled. I think the problems are:

                  (a) The endocrine nurses and some of the doctors are not used to dealing with patients who have cancer. They get all flustered when I bring up melanoma but pretend they aren't and become officious. Their 'bedside manner' could do with a lot of work.

                  (b) Their whole philosophy is to give replacement hormones in a way that mimic the physiological levels and they are obsessed with 'long time side effects'. Having people go on and on about 'long term side effects' when you are focused on still being being here in three years' time is more than frustrating. 

                  (c) They did not cope at all well with questions like, "Is there any chance my pituitary gland will recover?" or "My should I bother with moving to hydrocortisone when I am finally on a daily dose of prendisolone that is working for me?" My running hypothesis is that most of their patients are just focused on getting out the door and not having to see them for another 3 months.

                  I do not think it is a good sign that all the Type I diabetics I know hate going to the hospital and try to manage their condition through their GPs (general practitioners) or even their specialist diabetic nurse.

                  Also pituitary problems are not that common. Their literature was terrible. They had no procedures for explaining things – it took nine months before anyone realised that no one had told me that I shouldn't take my prednisolone on the morning of a blood test.

                  In the end I did my own research and read everything the society for people with Addison's produces because someone with Addisons has no adrenal cortext function, like me. Finally some clarity!

                WithinMySkin
                Participant
                  Stable is great news, Moira!! Hurrah! What exactly would the endocrine clinic provide, I wonder? Sending hugs across the pond!
                  WithinMySkin
                  Participant
                    Stable is great news, Moira!! Hurrah! What exactly would the endocrine clinic provide, I wonder? Sending hugs across the pond!
                    Mark_DC
                    Participant

                      Hi moira am glad for your good news

                      had my scans today (second set, stressful brain mri and cat scan for abdomen and leg) so hoping for good results

                      if you have any ideas on probiotics please share 

                      (am british like you, but live in the states so have to deal with completely different system!)

                      Mark_DC
                      Participant

                        Hi moira am glad for your good news

                        had my scans today (second set, stressful brain mri and cat scan for abdomen and leg) so hoping for good results

                        if you have any ideas on probiotics please share 

                        (am british like you, but live in the states so have to deal with completely different system!)

                          MoiraM
                          Participant

                            There were reports in the news (November 2015) about Ipi/Yervoy responders having certain flora in their gut.

                            It was dscussed on this forum:

                            http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/bifidobacteria-and

                            So I was interested that my consultant was thinking about it and asking questions. I guess I would say that anyone taking Ipi/Yeroy could consider taking a probiotic with a bifidobacteria species in it.

                            I take a probiotic but it was to help control the diarrhoea that came with Ipi and has never completely gone away. My Ipi treatment was before the stuff about the bifidobacteria hit the news.

                            The probiotic I take contains 4 bifidobacteria strains and is sold in the UK under the name 'BioKult'.

                            MoiraM
                            Participant

                              There were reports in the news (November 2015) about Ipi/Yervoy responders having certain flora in their gut.

                              It was dscussed on this forum:

                              http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/bifidobacteria-and

                              So I was interested that my consultant was thinking about it and asking questions. I guess I would say that anyone taking Ipi/Yeroy could consider taking a probiotic with a bifidobacteria species in it.

                              I take a probiotic but it was to help control the diarrhoea that came with Ipi and has never completely gone away. My Ipi treatment was before the stuff about the bifidobacteria hit the news.

                              The probiotic I take contains 4 bifidobacteria strains and is sold in the UK under the name 'BioKult'.

                              MoiraM
                              Participant

                                There were reports in the news (November 2015) about Ipi/Yervoy responders having certain flora in their gut.

                                It was dscussed on this forum:

                                http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/bifidobacteria-and

                                So I was interested that my consultant was thinking about it and asking questions. I guess I would say that anyone taking Ipi/Yeroy could consider taking a probiotic with a bifidobacteria species in it.

                                I take a probiotic but it was to help control the diarrhoea that came with Ipi and has never completely gone away. My Ipi treatment was before the stuff about the bifidobacteria hit the news.

                                The probiotic I take contains 4 bifidobacteria strains and is sold in the UK under the name 'BioKult'.

                              Mark_DC
                              Participant

                                Hi moira am glad for your good news

                                had my scans today (second set, stressful brain mri and cat scan for abdomen and leg) so hoping for good results

                                if you have any ideas on probiotics please share 

                                (am british like you, but live in the states so have to deal with completely different system!)

                                BrianP
                                Participant

                                  Congrats on the latest scans and thanks for the interesting points you brought up. 

                                  I read somewhere in the past that prior to the introduction to immunotherapy there was only something like 100 cases of hypophysistis ever recorded.  It was extremely rare so it's understandable why the endocrinology world was caught off guard.  The clinic sounds like a good idea.  Hopefully the endocrine specialist and the immunotherapy specialist will collaberate more because there definitely seems to be a lack of understanding between the two fields. 

                                  The endocrinologist I worked with was Dr. Mary Vance.  I didn't know it at the time but apparently she is very well known in the endocrine world here in the states.  She felt it was fairly unlikely that my pituitary gland would repair itself over time but she also admitted that she didn't know for sure.  We did experiment once about a year after my diagnosis to see if my adrenal glands would kick in and start producing cortisol and in did not. 

                                  Your post has motivated me to look into a good probiotic.  Thanks.

                                  Brian

                                  BrianP
                                  Participant

                                    Congrats on the latest scans and thanks for the interesting points you brought up. 

                                    I read somewhere in the past that prior to the introduction to immunotherapy there was only something like 100 cases of hypophysistis ever recorded.  It was extremely rare so it's understandable why the endocrinology world was caught off guard.  The clinic sounds like a good idea.  Hopefully the endocrine specialist and the immunotherapy specialist will collaberate more because there definitely seems to be a lack of understanding between the two fields. 

                                    The endocrinologist I worked with was Dr. Mary Vance.  I didn't know it at the time but apparently she is very well known in the endocrine world here in the states.  She felt it was fairly unlikely that my pituitary gland would repair itself over time but she also admitted that she didn't know for sure.  We did experiment once about a year after my diagnosis to see if my adrenal glands would kick in and start producing cortisol and in did not. 

                                    Your post has motivated me to look into a good probiotic.  Thanks.

                                    Brian

                                    BrianP
                                    Participant

                                      Congrats on the latest scans and thanks for the interesting points you brought up. 

                                      I read somewhere in the past that prior to the introduction to immunotherapy there was only something like 100 cases of hypophysistis ever recorded.  It was extremely rare so it's understandable why the endocrinology world was caught off guard.  The clinic sounds like a good idea.  Hopefully the endocrine specialist and the immunotherapy specialist will collaberate more because there definitely seems to be a lack of understanding between the two fields. 

                                      The endocrinologist I worked with was Dr. Mary Vance.  I didn't know it at the time but apparently she is very well known in the endocrine world here in the states.  She felt it was fairly unlikely that my pituitary gland would repair itself over time but she also admitted that she didn't know for sure.  We did experiment once about a year after my diagnosis to see if my adrenal glands would kick in and start producing cortisol and in did not. 

                                      Your post has motivated me to look into a good probiotic.  Thanks.

                                      Brian

                                      Scooby123
                                      Participant

                                        Hi MoiraM,

                                        glad to know scans all well for you and gone to 4 month reviews . Know how brave you have been when attending appointments.

                                        keep up the good work hun

                                        scooby123❤️

                                        Scooby123
                                        Participant

                                          Hi MoiraM,

                                          glad to know scans all well for you and gone to 4 month reviews . Know how brave you have been when attending appointments.

                                          keep up the good work hun

                                          scooby123❤️

                                          Scooby123
                                          Participant

                                            Hi MoiraM,

                                            glad to know scans all well for you and gone to 4 month reviews . Know how brave you have been when attending appointments.

                                            keep up the good work hun

                                            scooby123❤️

                                            DZnDef
                                            Participant

                                              Congratulations, Moira!  Stable is GREAT news!  Especially if their size/location is not bothering you.  I'm so glad you've been given an extra month between scans.  That's precious time to live life.

                                              DZnDef
                                              Participant

                                                Congratulations, Moira!  Stable is GREAT news!  Especially if their size/location is not bothering you.  I'm so glad you've been given an extra month between scans.  That's precious time to live life.

                                                DZnDef
                                                Participant

                                                  Congratulations, Moira!  Stable is GREAT news!  Especially if their size/location is not bothering you.  I'm so glad you've been given an extra month between scans.  That's precious time to live life.

                                                  sister of patient
                                                  Participant

                                                    Hi Moira,

                                                    I too am glad to hear your news!! Here's to stability and further shrinkage!!

                                                    Best thought always!

                                                    Barb

                                                     

                                                    sister of patient
                                                    Participant

                                                      Hi Moira,

                                                      I too am glad to hear your news!! Here's to stability and further shrinkage!!

                                                      Best thought always!

                                                      Barb

                                                       

                                                      sister of patient
                                                      Participant

                                                        Hi Moira,

                                                        I too am glad to hear your news!! Here's to stability and further shrinkage!!

                                                        Best thought always!

                                                        Barb

                                                         

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