problems with walking and fatigue

Hello Again:

It has been a long time since I have posted a word.  My husband was dx in Aug. 2008 at which time I took him to the ER thinking he had a stroke.  CT scan revealed a mass in the Occiputial Lobe.  Surgery followed Sept. 3, 2008 biopsy results Glioblastoma followed by pt and ot therapy.  Then home.  He then received six weeks of radiation and chemotherapy tolerated it fairly well.  Have received six cycles of temodar and odanestrone with MRI every two months.  Experienced fatigue, and some loss of appettite but has maintained a good weight.  Had his last MRI on 6/26/09  which was unremarkable.  He has been experiencing severe fatigue, and terrible problems with walking he says "his legs feel like concrete."  We were both terrified that the it had reappeared  because of his difficulty with walking.  My husband's Dr. said that nothing on the MRI showed that would account for his difficulties and it could not be the result of the temodar because we had not started the next cycle.  We left the Dr and he said if anything changes to call him.  This morning he says it feels like it is getting worse and I plan on calling the Dr. by the afternoon.  We are a bit confused as to what is causing his symptoms and I am scared to death.  Just wondering if anyone else has experienced anything like this and if so what steps you took to eleviate the problem.  Any responses will be greatly appreciated.

God Bless

Debb

Hi:  You might want to have your husband checked for blood clots in the legs.  They can cause both difficulty walking and extreme fatigue especially if any clots have moved to the lungs.  If clots exist they can be treated with blood thinners.

I don't think Temodar is known for blood clots as a side effect, but blood clots are definitely a potential side effect of GBM.

Good luck and I hope your doctors get to the bottom of this.

Carol 

 

 

Is He still on Dex??The muscles in the thighs are affected by prolonged use.

 

Don

I had the same first thought as Don. I suppose it could be pressure on that area of the brain, but it sounds like classic steroid side-effects: weakness and achiness in large muscles. Sarah mom of Andy 26, dx GBM/PNET 1/09

My tumors (just had a recurrence) were also located in the occipital lobe and I've experienced gate problems, pain, weakness and neuropathy in my legs since day one. Docs are also baffled as to what could cause it--it is not a known side effect of Avastin or CPT-11. They first tried celebrex to ease the pain, but it's not really pain--it's more an ache and numbness. Then they tried neurontin. It took a few weeks, but it's eased the discomfort immensely. My tumors were abutting the parietal lobe, which affects gate. There's nothing they can do for that--a permanent deficit. How is your husband's eyesight on the affected side?

 

On 6/29/2009 Don dennis wrote:

Is He still on Dex??The muscles in the thighs are affected by prolonged use.

 

Don

Hi Don,

What is Dex???

Thx,

Victoria

 

On 6/30/2009 CancerStrike2 wrote:

 

On 6/29/2009 Don dennis wrote:

Is He still on Dex??The muscles in the thighs are affected by prolonged use.

 

Don

Hi Don,

What is Dex???

Thx,

Victoria

 

Hi Victoria,Good question,Dex is a dreaded "must" in the initial treatment of a Brain tumor.There are at least 20 Brand names that I am aware of but they are all Dexamethesone.I have sent you more details in a private reply.

Victoria,this is the right place to ask these Questions no matter what they may be.You will find that the patients and caregivers will have lived most of your Questions.Keep us tuned in.

Our Best,

Don

 

On 6/30/2009 mbg53 wrote:

My tumors (just had a recurrence) were also located in the occipital lobe and I've experienced gate problems, pain, weakness and neuropathy in my legs since day one. Docs are also baffled as to what could cause it--it is not a known side effect of Avastin or CPT-11. They first tried celebrex to ease the pain, but it's not really pain--it's more an ache and numbness. Then they tried neurontin. It took a few weeks, but it's eased the discomfort immensely. My tumors were abutting the parietal lobe, which affects gate. There's nothing they can do for that--a permanent deficit. How is your husband's eyesight on the affected side?

Hi and thanks for taking the time to respond.  It is funny that you mentioned his eye sight, just yesterday he told me he was going to have to get glasses.  He says things look fuzzy to him.  We plan on getting his vision checked very soon.  My husband experiences all of the symptoms you mentioned in your post.  Thanks so much for responding to me.  God Bless whom ever began this sight.  I do not feel so all alone in the midst of this battle because of you and people like you. 

 God's strength and courage be with you:

Debb

 

 

 

 

 

 

 

 

hello

Wife  63 was dx 1/07 and had resection for gbm on right side and had the usual rad and temodar. lost sight in right eye  in oct 08 due to rad treatments and was generally fatigued up to 6 weeks ago. since then on provigil 100 mg/day and it has amazing great results for fatigue and memory...much much improved. she is now better than me on some tv quiz shows. maybe i shouldn't admit that. she is on avastin once every 2 weeks and stable mri's.she was never on a lot of dex so can't help on leg pain but try and try provigil for fatigue but start on low doseage and work up.

best wishes

 

On 6/30/2009 CancerStrike2 wrote:

 

On 6/29/2009 Don dennis wrote:

Is He still on Dex??The muscles in the thighs are affected by prolonged use.

 

Don

Hi Don,

No he is not .  He hasn't taken Dex in over 6 months.  Dr. started weaning him before his last radiation treatment.  Thanks Don

What is Dex???

Thx,

Victoria