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Stage IV – one year later
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Stage IV – one year later

› Forums › General Melanoma Community › Stage IV – one year later

  • Post
    • July 31, 2017 at 10:33 pm
    Ridingaroundwith27Jennifers
    Participant

      Here I am almost one year from my Stage IV diagnosis.  I met with my oncologist today.  Overall the outlook is positive.  I've only got two tumors (if no new ones pop up).  My big question was how long would I stay on Nivo treatments.  I'm tired and just want to stop.  I have a CT scan of chest/abdomin/pelvis on August 14th with more blood work and nivo treatment.  The plan is that if the scans show no tumors and the next MRI shows no tumors then 6 more months of treatments.  If CT still shows tumors then another 2 years of treatment.  The most interesting thing she said was that treatment options are changing repidly and that this tentative plan is based on data that is a month old.  So the plan may change as new data comes in.  Overall it's good news.  I just need enough energy to keep on.  I'm trying to balance low energy levels, work, kids, housework.  The thing that isn't on the list is exercise which I need to somehow fine the energy to fit in.

      And let's not forget the seizure driving ban.  Can't wait for that to be lifted.  Has anyone else with mild edema from brain tumor removal have minor seizure activity and get put on Keppra?  How much and did it help or just make you drowsy.

      Best,

      Jen

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    • Replies
        • August 1, 2017 at 3:28 am
        Jahendry12
        Participant

          Just wanted to say congrats Jen!  Praying for no tumors on your next scan. 

          • August 1, 2017 at 5:03 am
          UBContributor
          Participant

            yes, agree, it is promissing situation. Best of luck! Keep us posted

             

            • August 1, 2017 at 6:15 am
            sgreenberg
            Participant

              Congrats on the anniversary! My wife is 18 months following Stage IV diagnosis, has 9 brain mets and is prone to seizures from post-SRS edema and occasional tumor bleeding. Know that there are LOTS of anti-epileptic options out there – all quite effective. She's been on Depalept, Kepra, and Tripleptin…and finally settled on Vimpat. No need to compromise on side effects, but the transitions between meds can be tricky. Good luck!

              • August 1, 2017 at 12:23 pm
              marta010
              Participant

                Hi Jen – my husband has had a number of brain mets/edema issues and been on 750mg of Keppra 2 x day for the past 5 years.  At first, he was drowsy but has adjusted over the years. Hope you have great news with your upcoming scans.

                Ann

                • August 1, 2017 at 1:37 pm
                cancersnewnormal
                Participant

                  Congrats! It sounds like your doc is as up to date as possible on the long standing question of "when we can stop". I was put on Keppra in April 2013 after having a big juicy seizure that started this whole stage IV party. Six month driving ban was seriously annoying, and made simple things in life a big challenge! I must admit though… I was a little nervous about getting back behind the wheel at first. I started Keppra at 1000 mg twice per day and had no trouble with it. My brain has been carved into twice and gamma radiated for 10 rounds… sooooooo… I'm still on the Keppra, but have cut back to 500 mg x2 daily. I've never had an issue with it causing fatigue. The Keytruda made me far more sleepy, as did the hypothyroid that developed as a side effect of the immunotherapy. On very rare occasion, I still get twinges of numbness in a few of my left fingertips and the corner of my mouth. I've discussed coming off of Keppra with my docs, more in concern of my long term kidney health, than any noteable side effects. It is a very effective drug though. If you have trouble with it making you too dizzy or drowsy, there are other anti-seizure meds the docs can recommend. Do they still have you on steroids for the craniotomy edema? Those lil buggers gave me far worse issues with feeling drunk and tired all the time. 

                  BTW… work, kids, and housework… plus infusions and surgery… tired would be expected! : )  Sounds like maybe your Wonder Woman cape just needs to be loosened up a little for a week of "Jen time". ; )

                  • August 2, 2017 at 12:10 am
                  Ridingaroundwith27Jennifers
                  Participant

                    Thanks to you all for your support.  I'm doing OK but always feel better after your replies.  Good thoughts to you all as we travel down this uncertain path.

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