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going to be one of those weeks
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going to be one of those weeks

› Forums › General Melanoma Community › going to be one of those weeks

  • Post
    • April 5, 2016 at 11:33 am
    HopefulOne
    Participant

      Hi all,

      I've been MIA for a while. I know it's selfish but when things are going relatively smoothly for my husband – I want to feel like life is "normal" and so I tend to go dark and not come on this forum as much.

      But lately I've been poking around, checking on you all.

      A quick snapshot of his journey: primary melanoma about 20 years ago, its return October 2012 under his armpit (11 positive nodes out of 31 removed), spinal tumor in May 2013, small bowel resection in March 2014 and then another small bowel resection in May 2015. Since then, he's been on Keytruda. His #16 infusion is next week.

      Generally all has been well except the last few months he's been feeling more and more tired. I probably should back up and let you know that he's worked hardcore pretty much through all of this with a fairly physical job. And after chemo, you can pretty much find him at the gym lifting more than most of us weigh. 🙂 

      But the fatigue is getting to him. He's also been complaining about pain in his ribcage/chest area. He likens it to having a cracked rib that seems to get worse when he lays down.

      So what's the game plan? He's getting two MRIs (lumbar and thoracic) today. And then his former melanoma specialist (long story there but we're still in contact with her) suggested he get his endocrine functions checked out, said his issues could be inflammation around the lining between his chest wall and lungs, and/or bone mets (lytic lesions). Scenario three sounds the worst/most scary to me. Other than the MRIs today, we're going to wait until next week to talk about the other test options with his current melanoma specialist. 

      You know the drill: anxiety out the wazoo. I'm trying hard to remain positive and hopeful. But just having one of those freaked out days.

      If anyone has had or has had a loved one with similar symptoms, I'd be curious to hear about your journey.

      Wishing you all the best – and thankful we have this way to seek out support and positive energy from each other.

      Thank you.
      Kimberly

       

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    • Replies
        • April 5, 2016 at 2:28 pm
        Momofjake
        Participant

          So sorry you are having one of those days…we all know them well. Just a quick keytruda note. My son is a very active 18 yr old. He has a heavy tumor load w mets in most organs and spine bones etc. He has some bone pain(back and rib cage) from keytruda. He also has very bad fatigue. It's tough for these active guys! My son wants to go to college and off with the friends his age and is stuck here at home w mom. It's actually very sad. He took 9 mo of keytruda but new tumors keep popping up in scary places. His dr has stopped it and he starts the mekinist/Taflinar combo tomorrow. I pray keytruda can be your ticket out of this hateful disease!! 

          Hope he rests and feels calm. Let us know how scans go! You got this:)

          kerri

          • April 5, 2016 at 2:28 pm
          Momofjake
          Participant

            So sorry you are having one of those days…we all know them well. Just a quick keytruda note. My son is a very active 18 yr old. He has a heavy tumor load w mets in most organs and spine bones etc. He has some bone pain(back and rib cage) from keytruda. He also has very bad fatigue. It's tough for these active guys! My son wants to go to college and off with the friends his age and is stuck here at home w mom. It's actually very sad. He took 9 mo of keytruda but new tumors keep popping up in scary places. His dr has stopped it and he starts the mekinist/Taflinar combo tomorrow. I pray keytruda can be your ticket out of this hateful disease!! 

            Hope he rests and feels calm. Let us know how scans go! You got this:)

            kerri

              • April 5, 2016 at 3:45 pm
              HopefulOne
              Participant

                Hi Kerri – I'm so sorry to hear about your son. Oh my, he's so young. But he obviously has a great mom and a doctor who sounds very on top of things. Good luck with the Mekinist/Taflinar combo – and that this becomes his ticket out. I very much appreciate your note – especially "you got this" – that gave me the oomph of strength I was missing. Prayers and positive energy to your family. And thank you again.

                • April 5, 2016 at 3:45 pm
                HopefulOne
                Participant

                  Hi Kerri – I'm so sorry to hear about your son. Oh my, he's so young. But he obviously has a great mom and a doctor who sounds very on top of things. Good luck with the Mekinist/Taflinar combo – and that this becomes his ticket out. I very much appreciate your note – especially "you got this" – that gave me the oomph of strength I was missing. Prayers and positive energy to your family. And thank you again.

                  • April 5, 2016 at 3:45 pm
                  HopefulOne
                  Participant

                    Hi Kerri – I'm so sorry to hear about your son. Oh my, he's so young. But he obviously has a great mom and a doctor who sounds very on top of things. Good luck with the Mekinist/Taflinar combo – and that this becomes his ticket out. I very much appreciate your note – especially "you got this" – that gave me the oomph of strength I was missing. Prayers and positive energy to your family. And thank you again.

                    • April 27, 2016 at 12:59 am
                    HopefulOne
                    Participant

                      Hi Kerri. Just an update that my husband's appointment went well. One thing showed up on his MRI but they aren't too concerned about it being cancer. They are doing a PET Thursday to make sure it doesn't light up and to check the rest of his body. Hope you and your son are doing well! Kimberly

                      • April 27, 2016 at 12:59 am
                      HopefulOne
                      Participant

                        Hi Kerri. Just an update that my husband's appointment went well. One thing showed up on his MRI but they aren't too concerned about it being cancer. They are doing a PET Thursday to make sure it doesn't light up and to check the rest of his body. Hope you and your son are doing well! Kimberly

                        • April 27, 2016 at 12:59 am
                        HopefulOne
                        Participant

                          Hi Kerri. Just an update that my husband's appointment went well. One thing showed up on his MRI but they aren't too concerned about it being cancer. They are doing a PET Thursday to make sure it doesn't light up and to check the rest of his body. Hope you and your son are doing well! Kimberly

                        • April 5, 2016 at 2:28 pm
                        Momofjake
                        Participant

                          So sorry you are having one of those days…we all know them well. Just a quick keytruda note. My son is a very active 18 yr old. He has a heavy tumor load w mets in most organs and spine bones etc. He has some bone pain(back and rib cage) from keytruda. He also has very bad fatigue. It's tough for these active guys! My son wants to go to college and off with the friends his age and is stuck here at home w mom. It's actually very sad. He took 9 mo of keytruda but new tumors keep popping up in scary places. His dr has stopped it and he starts the mekinist/Taflinar combo tomorrow. I pray keytruda can be your ticket out of this hateful disease!! 

                          Hope he rests and feels calm. Let us know how scans go! You got this:)

                          kerri

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