Weakness. Barely walking

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Weakness. Barely walking

by cpnmorgan on Mon Feb 11, 2013 03:03 AM

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My husband is at 3 1/2 years surviving gbm. Recurrence began in June of last year. Gamma knife was done in November on three new spots and original(active) tumor area. On Avastin every two weeks and has done two doses of ccnu. He has also started the Novocure device(9 days). Currently within the last week his health has change drastically. He can barely walk. Is falling down. Weak and extremely fatigued. Last MRI jan. 26 showed no new changes however there are three different doctors reviewing it which has left conflicting overall views. Which I am making calls to Monday. One doctor saw a new active area while two others say there are no changes. And I haven't even heard whether the gamma knife worked or not. I am not sure if the ccnu, which he is roughly 18 post days taking, is the culprit. I just don't know. I am struggling helping him. And I am exhausted. Our kids, 12 and 15, are struggling too. Any thoughts on why he is doing so bad? I am making some calls tomorrow. I need answers. And some direction. This is so tough.

RE: Weakness. Barely walking

by kat54 on Mon Feb 11, 2013 04:28 AM

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maybe necrosis (dead tumor cells)  is causing pseudoprogression symptoms.  sometime the necrosis needs to be removed.  mine did.  hopefully you will get some answers tomorrow.  when mine flared up in 1995 dr.s didn't think I would survive the weekend or another surgery.  I did have the surgery 6/1/95.  prayers for a positive outcome, kathleen

RE: Weakness. Barely walking

by loveiseternal on Mon Feb 11, 2013 10:29 AM

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Yes, it is so tough.

Can't say for sure what is going on.  Avastin never worked for my husband.  I  haven't heard that CCNU is very effective either. 

Your kids are exactly the same ages as mine--my older son will be 15 next month and my younger son is 12.  They lost their dad last June and are doing pretty well, considering.  

I hope they figure out the culprit and your husband gets some quality of life back.  I hope you get some rest.

God bless,  Sally

RE: Weakness. Barely walking

by SarahGrey on Mon Feb 11, 2013 07:02 PM

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i feel like a broken record, keep repeating the same thing - yet maybe this is the cause?..  a need for more steroids could cause weakness and walking issues.  also, a need to adjust seizure meds can also cause these issues...  if they just did a mri and didnt see edema, then i guess steroids arent the issue - but maybe ask?  several times upping the dose of this med helped my husband function again.

RE: Weakness. Barely walking

by Bulley1 on Tue Feb 12, 2013 01:08 AM

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I know of one other person with similar symptoms. Now that he's off CCNU he's literally a different person. Good luck/best wishes that CCNU is the culprit. Pam

RE: Weakness. Barely walking

by cpnmorgan on Tue Feb 12, 2013 04:09 AM

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I spoke with one of the oncologists today who is seeing my husband at our cancer center. We looked at his MRI and he is seeing edema around one of the new areas, tumor. This has him concerned and leads him to believe this is the reason my husband is having so many issues. He recommended 2mg of Decadron twice a day at least for 5 days to see if things improve. Unfortunately this tumor which is showing up on the right side has grown since November's MRi. I don't think my husband realizes it has grown so. My husband has been reluctant to use Decadron because of the side effects however what quality of life can he have without it? It is so frustrating because he is so stubborn and sort of taking his health in his own hands knowing a lot of the medical part knowing what he does as a veterinarian. Caregivers!! Remember you are here to help your loved one and that is what I did today. I had questions and huge concerns with my husband's recent setbacks and seeing the oncologist today relieved me although seeing his recent Mri of course worries me. I don't believe the Avastin is working anymore and we will see how the Novocure does. I have mixed emotions on this device. I appreciate all of your comments. Thank you.

RE: Weakness. Barely walking

by SarahGrey on Tue Feb 12, 2013 11:00 PM

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4 mg of decadron is a low enough dose.  it should only help him and not really cause any side effects at that level.  if he DOESN'T take it, the swelling can cause damage.  and like you said, what quality of life will he have when he loses function, mental cognition, etc...  and remind him, it's only temporary!  (well, for many people - my husband hasn't been able to get off it but he also doesn't have any side effects aside from a hearty appetite).

And I agree - as caregivers it's our job and duty to make sure our loved ones are cared for properly and that means pressing for more information, second opinions, etc...  Right now they really need our help and we need to be there for them and protect them...

Good luck!!

RE: Weakness. Barely walking

by cpnmorgan on Wed Feb 13, 2013 11:34 PM

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We made an ER visit yesterday morning due to him doing so badly. My husband was assuming an inner ear infection causing his unsteady "vertigo" like symptoms. His temp was normal. Blood pressure fine. A check of his inner ear showed nothing. Mri was done and no change from mri on Jan. 26 however still seeing edema around one of the lesions/tumor located deep on his right side. 4mgs twice a day of decadron were prescribed. Today he is a 1/4 better. He drove to his veterinary office and had one of his associates call in a strong dose of antibiotics to our local pharmacy becAuse he feels he has some sort of infection and vertigo. I am at my wits end here that he continues to self diagnose himself and put our associate on the spot like that. I called her to tell I was sorry he had her do that and her words were "he's crazy". She knows how stubborn he is. I believe he is in denial about this tumor with edema causing problems. He argued with me in front of the ER doctor when I called this a tumor and my husband corrected me saying it is a lesion. Are they not the same thing? While I am trying to help him through this his constant wanting to self-diagnose and over analyze his symptoms is truly driving me nuts. I feel like I should talk to his oncologist yet I know he would be furious with me. I am so tired of this!

RE: Weakness. Barely walking

by SarahGrey on Thu Feb 14, 2013 02:03 AM

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omg...  the vertico feelings are coming from the edema.  my husband gets the saaame exact thing when his steroids are cut and he needs a higher dose.  your husband is not capable of making these decisions for himself...  whether it is a tumor or lesion (as he calls it) it is something in his brain that is causing him not to think clearly...  we're all going through this to one degree or another.  call his doctor and get advice.  your husband needs help - hopefully he will realize it soon before he gets hurt...  :(

ps - in our experience, it takes about a week of higher steroid dose before he is much better...  good luck, i know this is anything but easy...

RE: Weakness. Barely walking

by SarahGrey on Thu Feb 14, 2013 02:15 AM

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sorry i just read your 'bio' and understand more.  yes, gbm is a cancerous tumor.  calling it a lesion seems like denial...  :(

maybe the best thing is to call the oncologist and tell them your husband seems in denial and tell them what types of things are going on?  then in your next check up, the doc can talk to your husband and ask questions, etc...  and kind of bring these things to light.  such as, 'do you have any feelings of vertigo?  if so, this is a normal part of edema that will go away with steroids...'  etc.  the doc can do it in a way that is not obvious you called.  it might be your best bet at getting through to your husband.

on a side note...  is your husband ok to be working as a vet now?  he's been through a lot physically, mentally, emotionally...   he's ok to work?  my husband hasnt been able to because of his tumor(s)...  :(

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