Home Forums Melanoma Diagnosis: Stage IV Seizures and Upcoming Craniotomy

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  • #21523
    buffcody
    Participant

    I had my second set of seizures on July 31, which got better but lasted about six days total with 8 days in the hospital, 4 here in Kalamazoo, and 4 in my treatment hospital, University of Michigan. My wife found me passed out on our living room floor about a half hour after they hit and got me over to the local hospital by EMS about half hour, as we estimate, afterwards. The diagnosis has been necrosis from a previously radiated tumor, not a new met, and the neurosurgeon who was debating a craniotomy before this event, has now recommended it, and I have agreed for next Friday. The “remnant” is 2 cm. plus. Right now I am on a lot of dex (8mg.) and Keppra along with another anti-seizure drug. This will be the first day off Dilantin. It will be good if the cutback allows for a little more energy. Once I take my pills in the morning, which need to be at least partially taken then not just at bedtime, I mostly want to nap. Even better if the removal allows me to cut the medications to the point where I can get along with more energy and less of the munchies. Then a few weeks later, my clinical oncologist and I can talk about and plan for further systemic therapies. I did ipi last fall and early winter and have shown only one recurrence, in the left buttock, which was resected in early May before my first set of seizures.

    I’m very curious what implications for future treatment the complete genetic sequencing of my butt tumor may/will show. One thing I mentioned on this Forum before but know nothing more about at this point is that, though it had not shown up on two tests done previously, the sequencing indicated I was BRAF positive. My clinical onc also mentioned that the sequencing had shown some other unusual findings, but these are now backburner to the brain issue. I’m sure these findings will become more front and center in late September.

    Feeling better every day but not up to much more than a walk from one end of the block to the other. Ironic that I was just finishing my swim competition in the National Senior Games three weeks ago today. My neurosurgeon is master swimmer competitor, so we can talk turkey about how much and how hard I can work out as I recover. He is a great believer in physical performance rather than age alone playing a large role in cancer recovery and has written articles on the subject.

    Frank

    #62155
    Catherine Poole
    Keymaster

    Frank,

    It is good to hear from you. Sorry to hear all that you are going through. But you have a wonderful outlook and sounds like your wife is a rock too. I’m sure your level of physical activity has given you a lot of the extra strength you need. We’ll all be thinking of you here during your surgery and hope for the best outcome. Let us know how things are going!

    #62156
    odonoghue80
    Participant

    Frank,

    Wow, that sounds like it was a really long and ordeal with those seizures. I’m glad you are feeling better.

    I just went through similar: docs thought it was necrotic radiated tissue that causing swelling/activity causing seizure. Then recently I had language issues (speech especially) and fortunately I pressed docs for quicker imaging testing. Tumor then grew twice in size between 3 weeks of MRI. I also have full craniotomy scheduled next Friday although I am trying for second consult this week with MD Anderson. The consult appts are not moving fast for my liking. And I do not wait any longer to have surgery (especially I do like my surgeon at Univ of Chicago although he is leaving hospital in a month).

    Where is your tumor? Are you having issues outside of seizure?

    My location is left temporal and by sounds basically worst location. Language, coordination, cognitive function. Very serious stuff. Curious how your plan is? Surgeons thought?

    Good luck Frank,

    Wishing you look,

    Shane

    #62157
    buffcody
    Participant

    odonoghue80 wrote:

    Frank,

    Where is your tumor? Are you having issues outside of seizure?

    My location is left temporal and by sounds basically worst location. Language, coordination, cognitive function. Very serious stuff. Curious how your plan is? Surgeons thought?

    Good luck Frank,

    Wishing you look,

    Shane

    I had been getting very frequent brain MRIs leading up to seizures as part of a research study that I had entered on last year after the first mets had been found in October. As a result, my oncological team at U. of M. had a lot of info to go on. The tumor that was radiated and is considered necrotic but no longer cancerous (based mainly on PET scan evidence) is located in the right frontal lobe in a place that sounds like one of the best locations for the craniotomy. The neurosurgeon, however, was reluctant, I think, to go ahead with the surgery after the first set of seizures back in May because the anti-swelling and anti-seizure medications (dex and keppra) seemed to be handling the problem, and he has been described by my clinical oncologist as conservative. However, I think the clinical onc saw it as desirable to be more aggressive, particularly since the area had grown from less than a centimeter to two plus centimeters from October 2012 to July 2013. Now everyone on the team here (me too) feels like getting the necrotic tumor out sooner than later is a good choice. There has been general agreement based on PET scans that the tumor is no longer cancerous, but, of course, a more final verdict will come after biopsy following removal.

    I’m on 3000 mg. of Keppra, 8 mg. of Dex, and 400 mg. of Vimpat daily. I have just been removed from Dilantin as of yesterday. I’ve never felt as zapped out in my life. My recovery from the seizures in May was quick. I presume this one is more enervating mainly because of increased medication but perhaps also because the seizures lasted longer and were themselves more tumultuous. The first few hours of the day (starting very early at 4 am) are my best. As the day goes on, I nap a fair amount and find it hard to do much even walking around, mainly because of balance issues. I had significant problems speaking and even at times thinking in my 8 days in the hospital, but most all of that has cleared up now.

    I have no desire to do a second opinion. I feel that the team I work with at U. of M. provides second opinions to each other and have done a good job of discussing the pros and cons of the surgery among themselves. I’m ready to get on with it and hope that it will soon lead to a situation where I can either be on no medications or, more likely, cut back significantly. Of course, I have been warned that there is always a chance that something can go south in the course of this, but fortunately the tumor seems easy to get at. I told the doctor that I am much more interested in safety and efficacy than cosmetic outcomes.

    Wishing you the best, Shane, as we share our S (surgery) day together next week.

    Frank

    #62158
    Violeta
    Participant

    Frank , wish you all the best and good luck.

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