dragging foot, clean MRI? GBM long term survivor

 Mike, my husband's a long term GBM survivor,... over four years since a successful resection of a 2 1/2 x 7 cm , tumor... right temporal lobe.  MGMT methylated.  He had radiation and two six month rounds of temodar, an MRI every 2 months.  Had successful surgery for recurrence a year ago. He didn't have radiation this time but taking temodar again... new tests showed MGMT methylation for a second time.  It's been a year!  I've been trying to figure out why he's begun to have symptoms from a new, slightly weakened left side.  It shows mostly in his slow walking, dragging his left foot.  He's almost fallen many times... over sidewalk cracks or going up the stairs.  I hold onto him.  He's lost his balance a couple of times... "tipping" over while standing, looking straight ahead.  He's had two MRI's in two months. a full spinal MRI, PET CT scan, and lumbar puncture.  I thought it might be hydrocephalus but nothing shows on spinal tap, or... MRIs... all clear.  That's good!!... but why the dragging foot... balance problems?  not knowing the whys...  I've done all the reading, asked all the questions I can think of.  A physical therapist's just started coming by with exercises... he's getting used to using a cane, his hand grip's ok.  It's difficult leaving him alone, so afraid he'll fall.  So lucky not having issues until now, but here we are...  Does anyone have foot dragging issues without tumor growth showing on MRI.s? He's not taking steroids... just temodar and anti nausea...  Thank you!   

My father was not a long-term survivor so I'm not sure whether this will be applicable for your husband, but I just wanted to mention to you that even up til his last MRI a couple weeks before his death, my father had only small amounts of recurrance of the tumor. My understanding is that the invasive tendrils of the GBM don't always show up on the scans.

On May 09, 2017 3:30 AM tiffcat1 wrote:

 Mike, my husband's a long term GBM survivor,... over four years since a successful resection of a 2 1/2 x 7 cm , tumor... right temporal lobe.  MGMT methylated.  He had radiation and two six month rounds of temodar, an MRI every 2 months.  Had successful surgery for recurrence a year ago. He didn't have radiation this time but taking temodar again... new tests showed MGMT methylation for a second time.  It's been a year!  I've been trying to figure out why he's begun to have symptoms from a new, slightly weakened left side.  It shows mostly in his slow walking, dragging his left foot.  He's almost fallen many times... over sidewalk cracks or going up the stairs.  I hold onto him.  He's lost his balance a couple of times... "tipping" over while standing, looking straight ahead.  He's had two MRI's in two months. a full spinal MRI, PET CT scan, and lumbar puncture.  I thought it might be hydrocephalus but nothing shows on spinal tap, or... MRIs... all clear.  That's good!!... but why the dragging foot... balance problems?  not knowing the whys...  I've done all the reading, asked all the questions I can think of.  A physical therapist's just started coming by with exercises... he's getting used to using a cane, his hand grip's ok.  It's difficult leaving him alone, so afraid he'll fall.  So lucky not having issues until now, but here we are...  Does anyone have foot dragging issues without tumor growth showing on MRI.s? He's not taking steroids... just temodar and anti nausea...  Thank you!   

Hi tiffcat1,

Have they ruled out leptomeningeal spread?

We were seeing some right-sided weakness/imbalance in my husband at the beginning of this April... he was starting to trip occasionally, so we called to move up his MRI. He was also experiencing some bouts of nausea but we thought maybe it was from the Carboplatin/Avastin. Otherwise he was jogging and active. 

Initially the residual tumor on his MRI was deemed stable to the month before... he also had a lumbar puncture that came back clear. We thought maybe unmanaged seizures could be causing so they did EEGs too (spot and 24-hour). After being unable to determine cause of symptoms, they took another look at the MRI and said the cancer was now in the meninges and CSF. They said "this doesn't happen" when I asked if this was an expected progression. I think initially they were looking so closely at the residual tumor areas that they missed this type of progression?

On May 11, 2017 1:05 AM GBMQuestions wrote:

My father was not a long-term survivor so I'm not sure whether this will be applicable for your husband, but I just wanted to mention to you that even up til his last MRI a couple weeks before his death, my father had only small amounts of recurrance of the tumor. My understanding is that the invasive tendrils of the GBM don't always show up on the scans.

Wow, this is such a good question. My husband is on year 5. He's had GBM4 removed and 1 1/2 year another anaplastic astrocytoma 3 removed with, temadar, radiation treatments for both and avastin the last go around. His doctors said his last 2 MRI were stable and clear of tumors, but his slow speech and memory are getting worse. Plus his personality has changed drastically, just as if he had his golf ball size GBM had been there. I feel strongly they just don't know what's going on exactly in his brain, let's face it, so complex. But these explanations are so reasonable I think they are correct. Thank you all for sharing. I'm not loosing my mind in paranoia. Just have to deal with the symptoms now. They said no more surgery for him, too invasive. I doubt he'll agree to the extreme chemo the only option left. You all take care, much support coming your way!

They haven't ruled out or mentioned leptomeningeal yet.  I don't Think that's the cause of his symptoms.  I believe it's radionecrosis: https://www.ncbi.nlm.nih.gov/pubmed/10395835?log$=activity.  It's been four years with one recurrence, If you beat back the tumor for this long even though MGMT methylated, issues due to  radiation necrosis may show, even if there's no new tumor.. or regrowth.  I've read about tumors that can grow within necrosis and be missed, rarely found... possibley because they haven't looked for.  Soon I'll be talking with a neurosurgeon friend who has my husband's first post surgery and last MRI, he'll be honest knowing I'm more informed now and can understand that answers may be elusive... he might be more forthcoming with information. He also knows my husbanad's neurosurgeon whose he's communicated with... don't know the concensus yet.  Thank you for replying... 

These brain tumors can be elusive on MRI's I'm finding, even with the sharpest of eyes... sometimes they seed down to the spine... possibilities go on and on.

So sorry about your father.  

Thank so your response, caring interest.   

Terraserene, hi

Serene... a beautiful place to be.  

My husband's fallen four times since I posted this, his foot's more turned more outward and dragging.  His thinking is pretty good, his hand strength is compromised a little.  Since his weakness is one sided I just bout a Heme sidewalker on amazon, I highly recommend.  It's stable and can help getting up from a chair, bed... and takes up less space.  It's $38... worth it.  I'm not sure a walker with wheels and seat will help as he may loose grip strength in his left hand as I've found reading. His voice changes a from time to time now.  It seemed to have happened so fast!  I'm exhausted trying to do what's right for him,...begin to figure out what may be going on being they don't see signs of regrowth or new tumor.  Further surgery is out for Mike too...  I think he's experiencing radionecrosis, damage from initial radiation.. from four years ago!  You take care too.... keep in touch x

Tiffanie

On May 19, 2017 10:57 PM tiffcat1 wrote:

Terraserene, hi

Serene... a beautiful place to be.  

My husband's fallen four times since I posted this, his foot's more turned more outward and dragging.  His thinking is pretty good, his hand strength is compromised a little.  Since his weakness is one sided I just bout a Heme sidewalker on amazon, I highly recommend.  It's stable and can help getting up from a chair, bed... and takes up less space.  It's $38... worth it.  I'm not sure a walker with wheels and seat will help as he may loose grip strength in his left hand as I've found reading. His voice changes a from time to time now.  It seemed to have happened so fast!  I'm exhausted trying to do what's right for him,...begin to figure out what may be going on being they don't see signs of regrowth or new tumor.  Further surgery is out for Mike too...  I think he's experiencing radionecrosis, damage from initial radiation.. from four years ago!  You take care too.... keep in touch x

Tiffanie

I know, my husband kept falling before his diagnosis too, he thought it was due to failed back surgery that left him with drop foot. But that wasn't the case. Then as you know it progressed to hallucinations and jibberish talk, ear bleed. Drs totally missed it. I was saying all along it was a tumor since his mom and 2 uncles had the same and passed. A dear friend who also has a similar situation just told me, doctors really don't tell you everything. This last visit with our oncologist, really I asked if we could take a trip he said yes very slowly, but I could tell he wasn't saying what he really felt. He's a very compassionate dr. And wears his emotions on his sleve. Our son also goes to him for his leukemia, so he's come really close yo our family. I want to just talk to him one on one, but I'm almost scared to. He also mentioned radiation issues. My husband takes a special MRI with profusion. It tells the difference between scar tissue and tumor. Blood flow. MD anderson brain tumor specialist recommended. But as you say maybe it doesn't tell the whole story really. You can call me Terra. My name comes from peaceful land. It was supposed to be my daughters name. I had 2 sons:( love them dearly:))) Again thanks for all your insight. Hope we can all hang tight these days. Xxoo