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Small cell lung cancer side effects longer term

gregw
gregw CSN Member Posts: 6
edited March 2014 in Lung Cancer #1
This is my first post, hope I am doing this correctly. I was diagnosed with small cell lung cancer 2 days (lung and nodes in left lung=considered limited still) before christmas 2007. I am now 47 years old and have three children ages 27, 15 and 12. My diagnosis was a complete surprise. I was at Mayo Clinic for what I believed was a sinus issue. I was a smoker until about six months before diagnosis. I did 4 rounds of chemo (Etoposide and cysplatin, twice day radiation to my chest. MY scans two months later came up "clean". I then did PCI radiation to my head. It has been 21 months since diagnosis and scans (MRI, Petscan, and Cat scan) all come clean. I get scans every 3 months and alternate MRI and Pet scans every other.

Over the last 6 months I have developed a scintallating scotoma (spell) in my vision (also called migraine aura without headache. I have had two MRIs during this time and no metasis (my next MRI is next week and see Neurologist at Mayo also). 5 eye doctor exams come up normal. My oncologist (my hero) does not list this as side effect.

My question is does anyone know , had or heard of this being a side effect of treatment. Obviously it scares me as to brain metasis. I am sure you all know this fear. I never had these vision issues before and now not uncommon to get 4 or 5 a week.

Also any sclc long term survivors would be nice to hear from also. You are all in my prayers and look forward to feedback on my issue.
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Comments

  • stayingcalm
    stayingcalm CSN Member Posts: 650 Member
    #2
    Scintillating scotoma
    I didn't know this had another name (besides migraine), but I had it too - no headache, but a "wigglyness" in my vision that I would describe as looking like the invisible alien in the movie Predator (I know that sounds odd!). I was taking an experimental drug at that time, but a year or so prior I was on Cisplatin and Etoposide. It stopped happening after a couple of months, tho, and I attributed it to hormones and menopause. That wouldn't be your reason, however, if your name is Greg :)
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  • gregw
    gregw CSN Member Posts: 6
    #3
    stayingcalm said:

    Scintillating scotoma
    I didn't know this had another name (besides migraine), but I had it too - no headache, but a "wigglyness" in my vision that I would describe as looking like the invisible alien in the movie Predator (I know that sounds odd!). I was taking an experimental drug at that time, but a year or so prior I was on Cisplatin and Etoposide. It stopped happening after a couple of months, tho, and I attributed it to hormones and menopause. That wouldn't be your reason, however, if your name is Greg :)

    Thank you for response
    Thank you for your response
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  • medi_2
    medi_2 CSN Member Posts: 505 Member
    #4
    stayingcalm said:

    Scintillating scotoma
    I didn't know this had another name (besides migraine), but I had it too - no headache, but a "wigglyness" in my vision that I would describe as looking like the invisible alien in the movie Predator (I know that sounds odd!). I was taking an experimental drug at that time, but a year or so prior I was on Cisplatin and Etoposide. It stopped happening after a couple of months, tho, and I attributed it to hormones and menopause. That wouldn't be your reason, however, if your name is Greg :)

    Scotoma
    Lol, Stayingcalm; What a great description!
    To Greg: I'm not a 'long time' survivor yet, but plan to be!
    Everyday is a gift.
    Medi
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  • pkaz53
    pkaz53 CSN Member Posts: 84
    #5
    medi_2 said:

    Scotoma
    Lol, Stayingcalm; What a great description!
    To Greg: I'm not a 'long time' survivor yet, but plan to be!
    Everyday is a gift.
    Medi

    Scotoma
    I'm 6 yrs out of sclc and had this happened as recently as this past Saturday, I was driving and had to pull over because it was as stayingcalm described it a wiggling distortion I'm glad my wife was with me when this occured I felt nauseated this has occured several times in the past I also have sensitivity to the sun and bright lights.
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