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Confessions of a stage IV patient
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Confessions of a stage IV patient

› Forums › General Melanoma Community › Confessions of a stage IV patient

  • Post
    • February 24, 2018 at 7:17 pm
    Ridingaroundwith27Jennifers
    Participant

      Hi All,

      Overall things are going OK at the moment.  No new tumors.  Brain looks OK.  We are still watching the surgery site.  There is something going on but the Drs can't tell if it is normal healing, radiation injury or tumor regrowth so at this point we just wait.  Still on nivo every two weeks.  CT-scan is Tuesday to check remaining tumors on adrenal glad and liver.

      So here's the confession part.  I'm supposed to be taking lovenox twice a day because of the initial stroke.  The oncologists think the stroke was due to hypercoagulated state from the melanoma.  Since my blood is clotting normally I most likely don't need the lovenox.  The injection sites were so sore I just couldn't bare them anymore.  I stopped taking about a year after the initial stroke.  I told the Drs about this and they are all very supportive but won't sing-off on me not having the blood thinner without the vascular neurologist's approval.  So I've got that appointment coming up at the end of March.  

      Here's the other thing.  I'm supposed to be taking 750mg of Keppra daily for seizures.  The 500mg dose was managable however I don't feel very well on the 750mg dose so I've not been taking it.  I mentioned that I'd like to go down to the 500mg dose but they haven't made a decision yet.  I've been off it for 3 months with no seizures and thought that maybe I was doing OK and then yesterday – seizure.  I should tell you that these are very minor seizures.  I don't lose consciousnesss.  It's just uncomfortable and of course I get nervous and take the meds.  

      I know I should be doing everything they say to the letter (that's my normal mode of operation and my comfort zone) but I want to be normal again.  I want to do the things I used to do and not be tied to all these meds.  I had started back at work last July and got a promotion.  I want to stay working and do my job effectively.  The keppra makes me feel like my brain is numb.  I can't think.  I can't exactly work and think when I'm having seizures either.  Not to mention it isn't safe to drive.  I need to drive to get to work so then I need to be on the meds.  Where is the balance?  I can't seem to find my new normal.  I thought the hard part was behind me.  Looks like I'm wrong, again.

      Any tips on staying on blood thinners or anti-seizure meds?  I've hit that point where I'm med averse, and procedure averse.  The thought of Tuesday's scan has me tied in knots.

      Thanks,

      Jennifer

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    • Replies
        • February 24, 2018 at 7:19 pm
        Ridingaroundwith27Jennifers
        Participant

          typos above: sign-off not sing-off; bear not bare

          • February 25, 2018 at 12:42 am
          Prd10
          Participant

            Hi Jennifer,

            I don't have tips, but I will also confess that I couldn't stand lovenox and it just did me in.  I had a blood clot in my neck (this was after a big treatment failure and a hospitalization) and was prescribed lovenox indefinitely.  I would occasionally "forget" a dose bc I just couldn't even find room on my stomach.  Eventually at my pestering my oncologist agreed that bc my cancer is mostly under control that I could probably safely go off but of course his standard Dr recommendation would be to continue. I think I gave myself about 2-3 more shots after that and called it quits.  I like being able to confess here bc my family just freaked out at me, ya know the whole guilt trip, but for real I was over it.  I hope everything goes well this week!  Thinking of you! 

              • February 26, 2018 at 4:36 am
              Ridingaroundwith27Jennifers
              Participant

                I appreciate your response and thanks for the well wishes.  Lovenox is brutal.  My stomach was full of bruises and would just randomly bleed.  I had to bring gauze and bandages with me everywhere because one minute I'd be fine and the next I'd feel something wet on my stomach and be covered in blood stains.  Not awesome at work!  It freaks people out.  My family also freaked out when I stopped.  I can't get used to the forever meds.  I wasn't a big medication person before cancer.  I took a calcium and vitamin D supplement.  Now I'm on 4 forever meds.  Well, two if you count the ones I'm actually taking.  I'm planning on literally begging the vascular neurologist for an alternative if he says I have to take a blood thinner.

                I hope you are doing well.  A blood clot in the neck sounds terrifying as does big treatment failure.  I've been hospitalized 3 times since this journey started.  No matter how great a facility it is it is still horrible.  The beeping, the poking, the heart monitor leads (why is the glue on those so terrible?), the vitals checks at 3AM, and last but not least the roomates.  At least mine were sweet people.  I only hope they are OK as it seemed like they were fighting more difficult battles than I.

                Good wishes to you and hang in there yourself.

                Jennifer

              • February 27, 2018 at 9:39 pm
              cancersnewnormal
              Participant

                Hi Jennifer… I was put on 1000 mg x2 daily of Keppra after my initial grand mal seizure in 2013. After having neurosurgery and gamma, the docs eased things up to 500 mg x2 daily. The 1000 mg made me feel buzzed… almost 1/2 drunk all of the time. With only 500 on board twice per day, I was able to get by, and my body soon adjusted to feeling as if I were on nothing at all. Another "small hiccup" with the brain in early 2016 had the docs jumping for 1000 mg x2 daily again. Ugh. I finally talked them back down to 500 mg 2x daily again, and have been on them since… aaaaaaaand will forever be. I've had 2 crani's and 10 rounds of gamma… my brain is going to be doing some "weird and unpredictable" things for the rest of my life. If you can deal with 500 mg x2 per day, I'd beg them to bring you down to a level you are willing to take. If your body and brain still feel "off" at that dosage after 2-3 weeks, there are other anti-seizure meds they can try for you. Seems like docs default to the Keppra, but I know a couple of friends who had to move to something else, as their brains seemed just too loaded with the Levetiricitam (Keppra).

                  • March 4, 2018 at 2:39 am
                  Ridingaroundwith27Jennifers
                  Participant

                    Hi Nikki,

                    Sorry to hear about what you have been through.  Thanks very much for your reply.  I'm definitely going to do my best to talk them into the 500mg x2 daily dose.  I can't imagine being on the 1000mg.  That must have been awful.  I'm glad you were able to convince them to lower your dose.  A grand mal sounds scary.  Mine seizures are a series of muscle spasms.  It's the weirdest feeling and I lose all control of my right leg which is most inconvenient when I'm at work.

                    Thanks again and good wishes to you.

                    Jennifer

                    • March 5, 2018 at 2:58 pm
                    cancersnewnormal
                    Participant

                      The grand mal didn't scare me, so much as it scared the hell out of anyone else who had to witness it. I was "blissfully" unaware that anything was or had gone on. The loss of control in a limb… THAT is mentally uncomfortable. You know what's happening, but it's both frustrating and scary. Aside from some weird finger/lip numbness, the only other real "ahhh crap" I had was when the left side of my face (SO odd… like a midline was drawn perfectly centered down my face and tongue!) and my left hand decided to go all whack on me. I knew what was happening, and why… but man… sooooo very annoying. If it were a regular occurance, I'm sure I'd be looking for more permanent resolution….. but something that didn't make me feel half loaded 24/7. 

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