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Silly people want to look inside my empty head now!

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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.

AnneCan
Posts: 3692
Joined: Oct 2009

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's picture
Buzzard
Posts: 3073
Joined: Aug 2008

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....... :)

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lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

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's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

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's picture
plh4gail
Posts: 1238
Joined: Oct 2010

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's picture
Love2Cats
Posts: 127
Joined: Dec 2010

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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's picture
Nana b
Posts: 3045
Joined: May 2009

Just know that you will be fine, I also had a brain scan and all was well! You will be too!! Hugs Lori!

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Hugs sending you good vibes, prayers etc hoping all will be well.

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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's picture
hopeforcure49
Posts: 111
Joined: Jan 2011

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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Lori,
I am thinking about you and will be praying for you tomorrow. Please let us know.

Aloha,
Kathleen

Lifeisajourney
Posts: 217
Joined: Apr 2010

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's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Lori,

I'm praying you get good results!

*Hugs*
Gail

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

oh lori sending them right now hugs Tina

smokeyjoe
Posts: 1428
Joined: Feb 2011

Did you ever get these scans and results???

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

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.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Let us know your results !
Love you!

eibod
Posts: 160
Joined: Mar 2011

Hi Lori, Have been checking everyday,since reading your first post on the MRI. Read today that you will get the results on the 31st. Will be thinking of you and hoping that you get
good results.

LOUSWIFT
Posts: 372
Joined: Aug 2006

I am having some rare balance problems too. ONC says its the Oxi and don't plan on just stopping Oxi treatments will mean all gone. It will be there for a while some whiles are longer than others (I love it when he talks down to me)could be months to many months. Folfox is like a box of chocolates you never know what side effects you are going to get! (liberal use in paraphrase). The 5-flur back with my origianl colon cancer messed up my hands and feet so bad that my feet will not recover. I have to rent a cart when we go to Disney with the grand kids. My hands have permanent damage on my right hand index and thumb tips...don't feel anything. Well looking forward to Wednesday to get unplugged from the chemo pump forever. Thursday's CT scan...hoping for the best but very concerned. As for you I admire your determination if you have a little extra send me a scoop...right now I need it! Hugs always Lou

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