Silly people want to look inside my empty head now!

Lori-S
Lori-S Member Posts: 1,277 Member
So saw the onc today and was going over my side effects that were still bothering me after stopping FOLFOX 6 weeks ago. I have neuropathy in my feet still pretty much ... less pins and needles but lots of numbness, burning, falling asleep and if cold then the pins and needles. My hands less noticeable than my feet. I can pull stuff out of the fridge just fine but, not out of the freezer. And cold seems colder to me than to the "normal" person.

I have been having balance problems, actually fell last weekend and hit my head so hard that I almost knocked myself out. Fell on my wrist under my port and bruised the heck out of my chest. But, the port survived ... yay medical science. Also having problems if I bend over or stoop with coming back up without tipping over. So, though it's probably more related to the oxy neuropathy ... the onc ordered a brain scan just to be safe. I already told him it will come back blank ... no brain ... no problem ... hahahaha

So Saturday get to be up and at radiology at 6am (woo hoo) to do the MRI of the abdomen ... to try and get a better read on the new growth in the colon and a better look at the liver ... and one of the brain now too. What the heck ... I'll just pretend I'm in a space capsule and space out. Wish me luck that we get some good results from the scans.
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Comments

  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Good luck Lori!
    I guess it is better safe than sorry, but I am sorry you have this to go through. I disagree, though, they will see lots of brain in that head of yours! Thinking of you + sending hugs.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Lori....not to be worried about the brain scan.........
    You and I share the same trait.."all the lights are on, but nobody's home"...LOL....they won't find anything sweetheart, its just a side effect from the OXY, I fell against all kinds of things after and during chemo...........I use to when I was a lot younger too but thats a whole different reason and story...we won't go there....Love to ya sweetheart......buzz.....oh, and tell the young man I said hi....... :)
  • Buzzard said:

    Lori....not to be worried about the brain scan.........
    You and I share the same trait.."all the lights are on, but nobody's home"...LOL....they won't find anything sweetheart, its just a side effect from the OXY, I fell against all kinds of things after and during chemo...........I use to when I was a lot younger too but thats a whole different reason and story...we won't go there....Love to ya sweetheart......buzz.....oh, and tell the young man I said hi....... :)

    This comment has been removed by the Moderator
  • lisa42
    lisa42 Member Posts: 3,625 Member
    falling
    Hi Lori,

    Best wishes on the MRI Saturday. Just to let you know- I was off balance quite a bit following taking Folfox & still will get wobbly every now and then. So, I think it definitely can be a chemo side effect & perhaps sometimes your blood pressure drops quickly or goes a bit low and then the result is you feeling dizzy or wobbly. It is probably best to do the scan and rule anything out, but I definitely think you'll be relieved when your scan comes back completely normal!
    Prayers for you and sending hugs...

    Lisa :)
  • CherylHutch
    CherylHutch Member Posts: 1,375 Member
    If it's any consolation...
    It seems like quite a few of us are checking in with the dizzies and balance issues. I can relate to soooo many of your neuropathy signs. Both my feet have been hit bad by the neuropathy from the Oxi and the last Oxi I had was in the spring of 2007!! It has not let up with me at all! I have a hard time describing it because yes, it's numbness but it's so much more... and it can keep me awake all night some nights because of the pins/needles/burning/throbbing. Mostly it's in both feet... but when I'm having a bad flareup... it's both feet and shins ... going right up to the knees. Never above the knees though. I take 150mg of Lyrica daily and that does seem to help... but when it really goes nuts at night, I usually have to get up, walk around, bounce off a few walls, and then take two prescription Tylenol 3's and 5-10mg of Oxycodone. Not sure if that cures the neuropathy temporarily, but I usually can get back to sleep within an hour or two :)

    I thought it was just me being clumsy and blaming my lousy balance on the neuropathy and my arthritis (knees)... but maybe it is a symptom of the Oxy or 5FU damage, even though it was 4 years ago for me? I'll be interested in hearing what your onc finds out, Lori!

    Good luck with the MRI! But good to get it done and a clear picture of what's going on inside :)

    Cheryl
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    Lori, buddy, friend....I
    Lori, buddy, friend....I can't wait to hear the results from the MRI and hope to hear about an upcomming surgery date for the hernia, adhesions (I think?), and that darn tumor that snuck up on you. They're going to leave the brain alone! Then you join me with Folfiri.

    Love and hugs to you, Gail
  • Love2Cats
    Love2Cats Member Posts: 127
    Ouch
    Sorry to hear about your fall. Perhaps you could use a cane sometimes. I have a cane left over from an old knee surgery, that I plan on using when I feel weak.

    I definitely have the neuropathy also. Last weekend I went to Target to get gloves to help with this issue. They had gloves on sale 2 pair for $1.05. Now I keep a pair near the refrigerator, and near where I sit and drink my beverages (non alcoholic)and pairs in car.

    Hope everything goes well this Saturday.

    Sandy
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Love2Cats said:

    Ouch
    Sorry to hear about your fall. Perhaps you could use a cane sometimes. I have a cane left over from an old knee surgery, that I plan on using when I feel weak.

    I definitely have the neuropathy also. Last weekend I went to Target to get gloves to help with this issue. They had gloves on sale 2 pair for $1.05. Now I keep a pair near the refrigerator, and near where I sit and drink my beverages (non alcoholic)and pairs in car.

    Hope everything goes well this Saturday.

    Sandy

    Sorry about your balance problems but I'm still the same!
    even some times months after been off chemo! I wouldn't worry too much about! But here it goes some prayers to you!
    Hugs dear !
  • Nana b
    Nana b Member Posts: 3,030 Member
    pepebcn said:

    Sorry about your balance problems but I'm still the same!
    even some times months after been off chemo! I wouldn't worry too much about! But here it goes some prayers to you!
    Hugs dear !

    Just know that you will be
    Just know that you will be fine, I also had a brain scan and all was well! You will be too!! Hugs Lori!
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    Good luck Lori
    Hugs sending you good vibes, prayers etc hoping all will be well.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Thanks everyone!
    I'm sure my brain will be fine and it's just left over chemo effects. Am a bit curious about what the abdominal MRI will find since it will be a better picture than the CTs w/o contrast and help us locate what's going on with the evelated CEA and new growth showing on the CTs.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Lori:)
    I've got balance problems and near falling every time I do a new infusion - my motor skills get all out of whack - walking slows down to a shuffle, get clumsy and lose my balance too. I've fallen a few times.

    I think chemo in general can do this to us, Folfox or Folfiri.

    -Craig
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Sundanceh said:

    Lori:)
    I've got balance problems and near falling every time I do a new infusion - my motor skills get all out of whack - walking slows down to a shuffle, get clumsy and lose my balance too. I've fallen a few times.

    I think chemo in general can do this to us, Folfox or Folfiri.

    -Craig

    Thanks Craig
    I think it's just chemo related too. Wanna hear something funny? Less than 10 minutes after I posted this thread, I got up walked across the roon and fell down. Think I bruised my ribs good cause it's stll hurting today especially when I take a deep breath. I just shook my head and couldn't believe it. But, I just posted about falling ... doesn't mean I have to go do it again for good measure! hahaha

    But, they called and had me come in early for my MRIs. That was fine with me as I'd rather go in Friday afternoon than 6am on Saturday morning! The onc should have the results on Monday. I'll probably call on Tuesday to see if I can get some info. I'm mostly curious about the abdomem scan since it will be the first time we can really see the liver and get an idea about the recurrence in the colon. Not stressed about it just put it in the back of my head until Tuesday.
  • hopeforcure49
    hopeforcure49 Member Posts: 111
    Lori-S said:

    Thanks Craig
    I think it's just chemo related too. Wanna hear something funny? Less than 10 minutes after I posted this thread, I got up walked across the roon and fell down. Think I bruised my ribs good cause it's stll hurting today especially when I take a deep breath. I just shook my head and couldn't believe it. But, I just posted about falling ... doesn't mean I have to go do it again for good measure! hahaha

    But, they called and had me come in early for my MRIs. That was fine with me as I'd rather go in Friday afternoon than 6am on Saturday morning! The onc should have the results on Monday. I'll probably call on Tuesday to see if I can get some info. I'm mostly curious about the abdomem scan since it will be the first time we can really see the liver and get an idea about the recurrence in the colon. Not stressed about it just put it in the back of my head until Tuesday.

    I was going to reply on your first fall.
    Sorry, take it slow when you get up from your chair or bed. I also have that feeling when I pick something up from the floor. I kinda loose my balance. I hope your MRI is a good one. and Please don't hurt yourself. Maybe get your blood presure checked. But I also think its the chemo. Hope to hear good news. Take care. Blessing Lourdes.
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Lori
    Lori,
    I am thinking about you and will be praying for you tomorrow. Please let us know.

    Aloha,
    Kathleen
  • Lifeisajourney
    Lifeisajourney Member Posts: 216
    Onc said he never saw such
    a weird MRI brain scan after 6 folfox, took 7 and ended up in hospital......believe me folfox, not sure if it was oxi or 5fu, but whatever, it didn't agree with me and showed up in the brain MRI, which got much better after 3 mos off it. Even if your brain MRI is murky, it will get better the longer you are off the chemo. I had 3 major falls while on it.luckily on carpet. They even did a spinal tap, but it was all ok.only....chemo, but you will probably be much better the longer you are off it. It took from June till about September till I became more normal. The MRI in September was lots better than the May one....some of us just react differently to folfox. Good luck with your MRI's, I always hated the brain MRI,,,,,,,,all the knocking.....Pat
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Praying
    Lori,

    I'm praying you get good results!

    *Hugs*
    Gail
  • tina dasilva
    tina dasilva Member Posts: 641
    sending
    oh lori sending them right now hugs Tina
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    Did you ever get these scans
    Did you ever get these scans and results???
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    smokeyjoe said:

    Did you ever get these scans
    Did you ever get these scans and results???

    Hey there
    Yes, I had the MRIs but, I'm not scheduled to see the onc until the 31st. I would have called to get results but, I've been so busy with my son and ithe scan results dropped on the priority list right now.