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Ipi (Yervoy) one year on

Forums General Melanoma Community Ipi (Yervoy) one year on

  • Post
    MoiraM
    Participant

      I realised today that is a year to the day since my first Ipi infusion.

      Good points: My tutours shrank and could not be distinguished from normal tissue in my last CT scan.

      Bad points: My anterior pituitary gland is permanently damaged, so my body does not produce many of the hormones it should and living with inactive adrenal glands tuns out to be a bit tricky. Also my gut is still weird from the Ipi.

      Other points that others may identify with:

      1. My doctor said right at the start that if the Ipi worked, that would be 'a good thing'. When I turned out to be a responder (which was a total shock – I'm not the kind of person who pins my hopes on a 15% chance), 'good' became 'if you make it to three years you should make it to ten'. Despite reading everything I could get my hands on, I could not work out my chances of making it to three years without more evidence of melanoma. My husband and I decided on 50%.It seems a good enough guess after we looked at all those graphs and tables.

      2. Scans. They don't get any easier with practice. I have a CT scan sceduled for Monday. I can fine until about a week before the scan. Then I have the scan. Then I have an appointment with my melanoma consultant a week afterwards. So I am a bit shaky for these two weeks. I don't like admitting it though, because I am one of the lucky ones. Ipi worked for me. I feel I am being ungrateful.

      3. Why am I still working? I have an important job that I believe in but it is stressful and very hard work. I have an ongoing 'modified working' certifiate but I always go in and even end up doing more when my colleagues don't do their bit.There are other oprions but I cannot bring myself to take them.

      4. I have the best husband in the world.

      Other points that I doubt anyone will identify with:

      1. I knew I had melanoma for years before I sought treatment because I have a phobia or doctors and hospitals. I honestly expected to be too ill for treatment by the time I could not hide how sick I was. That was the plan. Only it didn't work out like that.

      2. In return for (a) various doctors putting up with me behaving as if I have a phobia of spiders and they are are 6 foot tarantulas and (b) them coming up with a treatment plan that meant I have not been admitted to hospital, I had a lot of therapy. The first course of treatment was to teach me to control the panic attacks and the seond to try and mitigate the actual phobia. The second involved CAT (cognitive analysis theraphy) and EMDT (eye movement desensitization therapy – which they use to treat PTSD) It's easier. The phobia has not gone. I now know that my childhood was not in the 'normal' range.

      3. I used to say 'I can do death but I can't do doctors'. I think it is still true. I am definitely not where I expected to be or going anywhere I expected to go. It's all very weird.

      All comments welcome.

       

    Viewing 14 reply threads
    • Replies
        jennunicorn
        Participant
          NED

          I want to say congrats on having good scans and being an Ipi responder (even with the yucky permanent side effects). I'll be keeping positive thoughts for you for more good scans to come.

          I know a lot of people don't quite understand phobias or how they work. I've done a lot of studying in the field of psychology and have dealt with my own phobias and anxieties. I will say you've done an incredible job getting through all of this very intensly medical stuff with your phobia. 

          I have a phobia of elevators.. when I was around 6 years old I was alone in an elevator of my father's apartment building and an earthquake hit.. it was the most terrifying experience of my life and have been terrified of them since. Now, having to go to medical buidlings that either the floor I need to go to is too high up to take stairs, or they don't even have stairs as an option as they're only used for emergency purposes, I've had to go in way too many elevators in the past 6 months for my liking. Thanfully I always bring someone with me to appointments and things, it is easier for me to ride an elevator if I have someone to literally lean on. I can't breathe when I am in them, I sweat, it's awful. But, through the constant exposure I have gotten a lot better with them and I am hopeful that as more time passes and more elevator rides occur that I can really desensitize myself to them. I'm my own psychology experiment in a sense. 

          So, hats off to you and your ability to be able to get into a doctors office and let them do what they need to help you. I can't even imagine how incredibly stressful and anxious it must make you. I hope all the best for you from this point forward, you deserve a long and healthy (and after a while, fairly doctor free) life!

          jennunicorn
          Participant
            NED

            I want to say congrats on having good scans and being an Ipi responder (even with the yucky permanent side effects). I'll be keeping positive thoughts for you for more good scans to come.

            I know a lot of people don't quite understand phobias or how they work. I've done a lot of studying in the field of psychology and have dealt with my own phobias and anxieties. I will say you've done an incredible job getting through all of this very intensly medical stuff with your phobia. 

            I have a phobia of elevators.. when I was around 6 years old I was alone in an elevator of my father's apartment building and an earthquake hit.. it was the most terrifying experience of my life and have been terrified of them since. Now, having to go to medical buidlings that either the floor I need to go to is too high up to take stairs, or they don't even have stairs as an option as they're only used for emergency purposes, I've had to go in way too many elevators in the past 6 months for my liking. Thanfully I always bring someone with me to appointments and things, it is easier for me to ride an elevator if I have someone to literally lean on. I can't breathe when I am in them, I sweat, it's awful. But, through the constant exposure I have gotten a lot better with them and I am hopeful that as more time passes and more elevator rides occur that I can really desensitize myself to them. I'm my own psychology experiment in a sense. 

            So, hats off to you and your ability to be able to get into a doctors office and let them do what they need to help you. I can't even imagine how incredibly stressful and anxious it must make you. I hope all the best for you from this point forward, you deserve a long and healthy (and after a while, fairly doctor free) life!

            jennunicorn
            Participant
              NED

              I want to say congrats on having good scans and being an Ipi responder (even with the yucky permanent side effects). I'll be keeping positive thoughts for you for more good scans to come.

              I know a lot of people don't quite understand phobias or how they work. I've done a lot of studying in the field of psychology and have dealt with my own phobias and anxieties. I will say you've done an incredible job getting through all of this very intensly medical stuff with your phobia. 

              I have a phobia of elevators.. when I was around 6 years old I was alone in an elevator of my father's apartment building and an earthquake hit.. it was the most terrifying experience of my life and have been terrified of them since. Now, having to go to medical buidlings that either the floor I need to go to is too high up to take stairs, or they don't even have stairs as an option as they're only used for emergency purposes, I've had to go in way too many elevators in the past 6 months for my liking. Thanfully I always bring someone with me to appointments and things, it is easier for me to ride an elevator if I have someone to literally lean on. I can't breathe when I am in them, I sweat, it's awful. But, through the constant exposure I have gotten a lot better with them and I am hopeful that as more time passes and more elevator rides occur that I can really desensitize myself to them. I'm my own psychology experiment in a sense. 

              So, hats off to you and your ability to be able to get into a doctors office and let them do what they need to help you. I can't even imagine how incredibly stressful and anxious it must make you. I hope all the best for you from this point forward, you deserve a long and healthy (and after a while, fairly doctor free) life!

              DZnDef
              Participant

                Congratulations Moira on your phenomenal scans!!!  I truly hope that you are a long-term responder to Ipi so you can keep those doctor visits to an absolute minimum.  Phobias are serious stuff and I applaud your extraordinary courage in dealing with yours while fighting this disease.  

                "I am definitely not where I expected to be or going anywhere I expected to go."  That about sums up my own feelings.

                Cheers!

                Maggie

                DZnDef
                Participant

                  Congratulations Moira on your phenomenal scans!!!  I truly hope that you are a long-term responder to Ipi so you can keep those doctor visits to an absolute minimum.  Phobias are serious stuff and I applaud your extraordinary courage in dealing with yours while fighting this disease.  

                  "I am definitely not where I expected to be or going anywhere I expected to go."  That about sums up my own feelings.

                  Cheers!

                  Maggie

                  DZnDef
                  Participant

                    Congratulations Moira on your phenomenal scans!!!  I truly hope that you are a long-term responder to Ipi so you can keep those doctor visits to an absolute minimum.  Phobias are serious stuff and I applaud your extraordinary courage in dealing with yours while fighting this disease.  

                    "I am definitely not where I expected to be or going anywhere I expected to go."  That about sums up my own feelings.

                    Cheers!

                    Maggie

                    sister of patient
                    Participant

                      Way to go Moira!! So pleased for you – whatever you're doing, keep doing it!!

                      sister of patient
                      Participant

                        Way to go Moira!! So pleased for you – whatever you're doing, keep doing it!!

                        sister of patient
                        Participant

                          Way to go Moira!! So pleased for you – whatever you're doing, keep doing it!!

                          Scooby123
                          Participant

                            Hi MoiraM

                            so pleased for you hoping you continue good scans. Did you look at the information on the conference on melanoma at Bristol . Me and my husband will be attending it is on Friday 17th June . 

                            Keep well

                            scooby123❤️

                            Scooby123
                            Participant

                              Hi MoiraM

                              so pleased for you hoping you continue good scans. Did you look at the information on the conference on melanoma at Bristol . Me and my husband will be attending it is on Friday 17th June . 

                              Keep well

                              scooby123❤️

                                MoiraM
                                Participant

                                  Not for me. On my list this summer are picking out some roses bushes for my front garden and looking into 'day with the tigers' experiences at zoos.

                                  MoiraM
                                  Participant

                                    Not for me. On my list this summer are picking out some roses bushes for my front garden and looking into 'day with the tigers' experiences at zoos.

                                    MoiraM
                                    Participant

                                      Not for me. On my list this summer are picking out some roses bushes for my front garden and looking into 'day with the tigers' experiences at zoos.

                                    Scooby123
                                    Participant

                                      Hi MoiraM

                                      so pleased for you hoping you continue good scans. Did you look at the information on the conference on melanoma at Bristol . Me and my husband will be attending it is on Friday 17th June . 

                                      Keep well

                                      scooby123❤️

                                      Scooby123
                                      Participant

                                        Hi MoiraM

                                        so pleased for you hoping you continue good scans. Did you look at the information on the conference on melanoma at Bristol . Me and my husband will be attending it is on Friday 17th June . 

                                        Keep well

                                        scooby123❤️

                                        Scooby123
                                        Participant

                                          Hi MoiraM

                                          so pleased for you hoping you continue good scans. Did you look at the information on the conference on melanoma at Bristol . Me and my husband will be attending it is on Friday 17th June . 

                                          Keep well

                                          scooby123❤️

                                          Scooby123
                                          Participant

                                            Hi MoiraM

                                            so pleased for you hoping you continue good scans. Did you look at the information on the conference on melanoma at Bristol . Me and my husband will be attending it is on Friday 17th June . 

                                            Keep well

                                            scooby123❤️

                                        Viewing 14 reply threads
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