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Scarey Saturday
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Scarey Saturday

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  • Post
    • May 27, 2017 at 3:56 pm
    Shaneswife
    Participant

      Things were such a normal morning. Until I saw shane and he was in such a fog. Couldn't speak and was wandering around. I got him to sit down and he started seizing. Grand mal seizure. We are in hospital now and they are loading him up with anti seizure medications. It's absolutely terrifying to see him seize. I really thought he was dying right then in my arms. 

       

      Janis

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    • Replies
        • May 27, 2017 at 4:12 pm
        jennunicorn
        Participant

          Janis that is so so scary. I've been keeping up with your postings lately and I just want you to know my heart is with you and Shane. 

          • May 27, 2017 at 5:54 pm
          sister of patient
          Participant

            Ah Janis – I'm echoing Jenn here but my heart goes out to both of you. You are truly courageous!! I'm holding best possible thoughts for Shane!! Big hugs to you!

            Barb

             

            • May 27, 2017 at 5:58 pm
            AliCat61
            Participant

              I am so sorry. That had to be terrifying. Please keep us posted. Roller coaster rides seem to be a way of life with cancer. I'm elated every time we get good news and then just when I'm thinking it just might all be ok, something surprising will hit me like a ton of bricks. Please know that I am thinking of you both. 

              • May 28, 2017 at 3:28 am
              Shaneswife
              Participant

                So Shane is home now. They have added 300mg of Dilantin to his medication routine. The er doctor wouldn't get the on call oncologist because I felt a scan wasnt prudent so I have to call his oncologist first thing Monday morning as I want his opinion on if he should have another scan and if we should go back up to 8mg of dexamethazone as we'd decreased to 4mg 5 days before the seizure. The er doc didn't seem to think so and recommended that we go down to 2mg as per the taper plan. But I don't want to do that until I have a 2nd opinion from the oncologist. 

                I'll tell ya, having a seizure this morning to the point I thought he was dying in my arms and looking at him now it's like it never happened. He rebounded so quickly. 

                The Dilantin sure makes him act drunk though. And combative but they said that could be because they infused it quickly. I'm hoping the pills don't cause the same level of stupor cause he was literally falling down like he was drunk from the drug when he tried to walk. And combative with the nurses about ripping off all his leads and trying to rip his iv out cause he "was going home". It was quite the site. 

                Thank you all for your kind words. I follow all your stories and bestow good thoughts on you all daily. 

                Janis

                  • May 28, 2017 at 5:20 am
                  sgreenberg
                  Participant

                    Sounds like a terrible morning. Been there with my wife (Stage IV, brain mets) – she at least waited until the ER to go grand mal…

                    Re. anti-seizure meds – just know that there are a TON out there. My wife went through four until she found one that didn't make her hands shake, or make her depressed, or put her in the hopsital due to a bad drug interaction with the TafMek combo. She's been taking a drug called Vimpat for over six months now, with no seizures or noticeable side effects. 

                    Point is – don't compromise on quality of life with these drugs. Insist that your onco or neurologist work with you to find the right one.

                    Good luck!

                     

                  • May 28, 2017 at 5:17 am
                  Patrisa
                  Participant

                    Dear Janis,

                    I follow your story and have to tell you how amazing and strong you are… I am so proud of you (I know it sounds weird) but I really am… 

                    Hoping and praying for your hubby….

                    Love,

                    Patrisa

                    • May 28, 2017 at 5:17 am
                    Patrisa
                    Participant

                      Dear Janis,

                      I follow your story and have to tell you how amazing and strong you are… I am so proud of you (I know it sounds weird) but I really am… 

                      Hoping and praying for your hubby….

                      Love,

                      Patrisa

                      • May 28, 2017 at 5:23 pm
                      Bubbles
                      Participant

                        Sorry you and Shane have been dealing with all of that.  I am sure that was very frightening for you both!!!  Sometimes just after a seizure (and this can last even a couple of days) folks are not themselves…sometimes very sleep and out of it…sometimes combative and argumentative in ways they would normally never be!!  It even has a name in medicine…the post-ictal phase.  So…give your new meds a minute.  They usually have fewer sombulant (sleepy or drunk-like behaviors) after a few doses – AND – he needs a minute to make sure his behaviors are not residual effects from the seizure itself.  However, if things don't settle down and his behaviors fail to return to normal – the prior poster was correct!  There are many anti-seizure meds available and Shane's docs should be able to find one and a dosage schedule that works well for him.  I would certainly want to discuss all of this with the oncologist as well….so I think you are wise to plan on contacting them.

                        Hang in there.  Celeste

                        • May 30, 2017 at 5:29 pm
                        zfishberg
                        Participant

                          Hi Janis!

                          My husband also has a lot of brain mets wight only a few in his lungs. He also had mixed response to targeted BRAF combo and even Keytruda. Some of the mets were reduced in size, some got bigger and new ones keep popping-up. I think that nobody can explain for sure why the results are mixed. It could be the speed of disease progression, "bad luck", etc. As we know there are no answers to the question of who will be a good responder versus non-responder to the targeted/immunotherapy drugs.

                          Currently he is on the ipi/nivo infusions – we had 2 of them so far.

                          He is constantly on steroids – between 4 mg and 8 mg – because of the inflammation in the brain.

                          Although he did not have such severe symptoms as your husband, he frequently forgets things and seems disoriented. In addition he is experiencing tremendous fatigue.

                          Yesterday the doctor increased the dosage of decadron to 12mg.

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