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It’s a never ending battle this weekend
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It’s a never ending battle this weekend

› Forums › General Melanoma Community › It’s a never ending battle this weekend

  • Post
    • May 29, 2017 at 8:07 am
    Shaneswife
    Participant

      As I posted on Saturday, Shane had a grand mal seizure. They put him on Dilantin and sent him home. Sunday evening we're driving back from groceries and shane starts talking gibberish. Like actual gibberish. I asked him the day the month and the year and he couldn't give me the right words. I asked if he knew his name and he shook his head no. At this point he lost his ability to speak. Called 911 as I was thinking a stroke. Once in the ER Shane continued to deteriorate. He started having multiple seizures but they gave him Ativan to stop them. He was in and out of consciousness in the ER. They did a cat scan and found that he had significant edema around a lot of the tumors. They've attributed this to the reduction in his steroids. He was fine at 8mg and they dropped to 4mg a week ago and he was fine til the first seizure Saturday morning. The ER advised to continue with the taper so this morning he only had 2mg of dex. Then this all happened at 7pm Sunday. They've admitted him to hospital and loaded him back up to 16mg of dex. 

      The nurses have been taking great care of him and let me spend the the night. However I can't sleep a wink hence my 4am post. 

      We shall see what the oncologist says tomorrow. I'm not sure Shane's in any position to even start his first infusion of pembro on Thursday as scheduled. 

      You have all been so kind in your words of support and I've appreciated every response and message sent. I will message back or call once things settle here. 

      Thanks for listening to me. Again. 

       

      Janis 

    Viewing 6 reply threads
    • Replies
        • May 29, 2017 at 8:33 am
        sgreenberg
        Participant

          What a nightmare. Similar experience with my wife around nine months ago – still have the grey hairs to prove it. BUT IT PASSED, and she's actually stabilized nicely (knock wood) with Keytruda and the anti-seizure meds. Hang in there.

          • May 29, 2017 at 1:49 pm
          Gene_S
          Participant

            Hello Janis,  I am so sorry you are going through this.  I don't have any experience with brain mets but we were told by my husbands oncologist to contact him immediately if anything happened out of the norm.  So I would try to contact him and hopefully he will get back to you today and will at least be aware of what is happening.  We had to call one time on a Sunday and he did get back to us a few hours later and said it was no problem calling him.

            Judy (loving wife of Gene Stage IV and now NED for almost 5 years.)

            • May 29, 2017 at 2:10 pm
            sister of patient
            Participant

              Hi Janis,

              What a weekend eh!! I sincerely hope this is the last time you have to go through such a terrifying experience and that the anti-seizure meds will do their job.

              My sister had a really tough time tapering from steroids too – she can't get below 8 mgs. of dex or all kinds of things happen, so has been on that dose since last summer. 

              I sure hope you get some rest!! Take care and big hug going out to you!!

              Barb

              • May 29, 2017 at 2:14 pm
              Momofjake
              Participant

                Thinking of you. Long nights in the hospital are very hard and lonely. Lots of prayers for the dr to fin something that helps!! 

                With much love,

                kerri

                • May 29, 2017 at 4:22 pm
                Shannon B
                Participant

                  Prayers for y'all. So sorry you are going through this..

                  Shannon

                  • May 29, 2017 at 6:25 pm
                  Franny
                  Participant

                    Love and prayers this disease is such a trial for us all!!!!

                     

                    • May 29, 2017 at 10:59 pm
                    Shaneswife
                    Participant

                      Thanks for the kind words of support. Shane is no better this evening. The seizures continue and they've put him back on 16mg of dex. He still can't speak correctly. Gibberish comes out for the most part. Pembro has been put on hold until seizure control is achieved. It's been a long 48 hours of no sleep but no where near the suffering of my dear Shane. 

                       

                      Janis

                        • May 30, 2017 at 3:33 am
                        casagrayson
                        Participant

                          I'm so sorry, Janis.  I hope Shane gets relief soon.

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