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Five month roller coaster ride and still rolling.

Forums General Melanoma Community Five month roller coaster ride and still rolling.

  • Post
    jogo
    Participant

      This is all happening very quickly for me.  I felt a lump on the left side of my face May 6th.  June 6th, I had a total left parotidectomy and radical disection of the the lymph nodes/glands of the left side of my neck.  The primary melanoma was never located nor identified.  After testing and randomization, my first infusion was July 30th.  I had 2 infusions of ipilimumab and had diarreah for a few days before I was to have my 3rd infusion.  It [diarreah] stopped after 2 days of Budesonide and Imodium.  It [diarreah] resumed three days later, the weekend before my rescheduled [3rd] infusion.  I also had a temperarure of 101.7 F.  I was hospitalized.   A colonoscopy confirmed ipilimummab induced colotis.  I'm on a steroid regemin [Prednisone starting 120 mg and tapering].  The oncology team told me I will remain in the clinical trial but will not be resuming the infusions. I had just 2 infusions of 3 mg/ Kg body weight.   I am now dealing with colotis.   It's been a five month roller coater ride.  The half full glass theory is that my immune system has been activated.  Now it needs direction.

      My father died of metastic melanoma January 1989.  I turned 71 this past March.  I joined the clinical trial [E 1609] for my dad, my daughters, and my grandchildren.]

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    • Replies
        Momrn5
        Participant
          I am also new to the diagnosis. Stage 3. I too was offered a trial. The MLST 2, randomization into a wait and watch arm versus a completion groin dissection. This trial was offered because apparently I am low risk for reoccurrence even with a small amount of cancerous cells in the sentinel node. After much research, I chose not to participate and to go ahead with the dissection. While researching, I came across the trial that you are participating in and thought, well that is what I would do if I need to. There can be bad side effects with these drugs but they do offer some benefit for a sub set of people with Melanoma. So sorry that you have to deal with this illness as well as the diagnosis. Hang in there. You very well may get some benefit from the drug even though you aren’t completing the full dose. I have read that people respond without having the full course of treatment with ipi. I read your profile and found that you also had a family member with Melanoma. I have a first cousin with pancreatic cancer. There is some indication that the 2 dx. are connected. I am going to volunteer for a research study that is going on in relation to the familial tendency between these 2 cancers. Research is so important for people, I applaud you for going into the trial. Best wishes to you.
            jogo
            Participant

              Thank you.  My older daughter told me to get into a gentic testing program for pancreatc and breast cancer.  My both my father's sisters had breast cancer as well and the daughter of one of my aunts.  (The other had sons.)  My 2 daughters comprise the only non single female per generation in my mother's family for  six generatios that we know of.  The colitis is easing up.  I've learned to spell it [colitis] ]correctly.   The Prednisone is making me a little hyper but I'm dealing.  My sense of humor helps.  The irony is  I have always been the care giver.  My husband had a heart attack at age 36  [1976]; quadripple by-pass at forty[1981].  He had stents and a pacemaker/defibrilater/cardio-ventrical syncronization device implanted this century.  I've been the care giver for my parents, our diabled [younger] daughter and him. They [husbandand daughters] are holding up, but I'm worried about them.  I'm very aware  that there are families younger than mine dealing with this [cancer].  I'm 71.  When I was recieving my first infustion there was a young woman being treated, as part of a clinical trial, for inopperable brain cancer. She was young enough to be my granddaughter.   As much a I may regret things done and not done, I did have the time to mess up my own life. Older daughter tells me I have to stay around to be a crabby old lady. She says I'm entitled.

              JerryfromFauq
              Participant

                Agree with your daughter!

                JerryfromFauq
                Participant

                  Agree with your daughter!

                  JerryfromFauq
                  Participant

                    Agree with your daughter!

                    jogo
                    Participant

                      Thank you.  My older daughter told me to get into a gentic testing program for pancreatc and breast cancer.  My both my father's sisters had breast cancer as well and the daughter of one of my aunts.  (The other had sons.)  My 2 daughters comprise the only non single female per generation in my mother's family for  six generatios that we know of.  The colitis is easing up.  I've learned to spell it [colitis] ]correctly.   The Prednisone is making me a little hyper but I'm dealing.  My sense of humor helps.  The irony is  I have always been the care giver.  My husband had a heart attack at age 36  [1976]; quadripple by-pass at forty[1981].  He had stents and a pacemaker/defibrilater/cardio-ventrical syncronization device implanted this century.  I've been the care giver for my parents, our diabled [younger] daughter and him. They [husbandand daughters] are holding up, but I'm worried about them.  I'm very aware  that there are families younger than mine dealing with this [cancer].  I'm 71.  When I was recieving my first infustion there was a young woman being treated, as part of a clinical trial, for inopperable brain cancer. She was young enough to be my granddaughter.   As much a I may regret things done and not done, I did have the time to mess up my own life. Older daughter tells me I have to stay around to be a crabby old lady. She says I'm entitled.

                      jogo
                      Participant

                        Thank you.  My older daughter told me to get into a gentic testing program for pancreatc and breast cancer.  My both my father's sisters had breast cancer as well and the daughter of one of my aunts.  (The other had sons.)  My 2 daughters comprise the only non single female per generation in my mother's family for  six generatios that we know of.  The colitis is easing up.  I've learned to spell it [colitis] ]correctly.   The Prednisone is making me a little hyper but I'm dealing.  My sense of humor helps.  The irony is  I have always been the care giver.  My husband had a heart attack at age 36  [1976]; quadripple by-pass at forty[1981].  He had stents and a pacemaker/defibrilater/cardio-ventrical syncronization device implanted this century.  I've been the care giver for my parents, our diabled [younger] daughter and him. They [husbandand daughters] are holding up, but I'm worried about them.  I'm very aware  that there are families younger than mine dealing with this [cancer].  I'm 71.  When I was recieving my first infustion there was a young woman being treated, as part of a clinical trial, for inopperable brain cancer. She was young enough to be my granddaughter.   As much a I may regret things done and not done, I did have the time to mess up my own life. Older daughter tells me I have to stay around to be a crabby old lady. She says I'm entitled.

                      Momrn5
                      Participant
                        I am also new to the diagnosis. Stage 3. I too was offered a trial. The MLST 2, randomization into a wait and watch arm versus a completion groin dissection. This trial was offered because apparently I am low risk for reoccurrence even with a small amount of cancerous cells in the sentinel node. After much research, I chose not to participate and to go ahead with the dissection. While researching, I came across the trial that you are participating in and thought, well that is what I would do if I need to. There can be bad side effects with these drugs but they do offer some benefit for a sub set of people with Melanoma. So sorry that you have to deal with this illness as well as the diagnosis. Hang in there. You very well may get some benefit from the drug even though you aren’t completing the full dose. I have read that people respond without having the full course of treatment with ipi. I read your profile and found that you also had a family member with Melanoma. I have a first cousin with pancreatic cancer. There is some indication that the 2 dx. are connected. I am going to volunteer for a research study that is going on in relation to the familial tendency between these 2 cancers. Research is so important for people, I applaud you for going into the trial. Best wishes to you.
                        Momrn5
                        Participant
                          I am also new to the diagnosis. Stage 3. I too was offered a trial. The MLST 2, randomization into a wait and watch arm versus a completion groin dissection. This trial was offered because apparently I am low risk for reoccurrence even with a small amount of cancerous cells in the sentinel node. After much research, I chose not to participate and to go ahead with the dissection. While researching, I came across the trial that you are participating in and thought, well that is what I would do if I need to. There can be bad side effects with these drugs but they do offer some benefit for a sub set of people with Melanoma. So sorry that you have to deal with this illness as well as the diagnosis. Hang in there. You very well may get some benefit from the drug even though you aren’t completing the full dose. I have read that people respond without having the full course of treatment with ipi. I read your profile and found that you also had a family member with Melanoma. I have a first cousin with pancreatic cancer. There is some indication that the 2 dx. are connected. I am going to volunteer for a research study that is going on in relation to the familial tendency between these 2 cancers. Research is so important for people, I applaud you for going into the trial. Best wishes to you.
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