Driving with GBM 4

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Driving with GBM 4

by MkScott on Tue Feb 15, 2011 06:17 PM

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I was diagnosed with GBM 4 back on September 21, 2010.  They removed what they could of the tumor and since then I've gone through the radiation and temador.  I'm currently on an Avastin/Temador treatment right now.  I take Avastin once every two weeks and the Temador for 5 days then off for 28 days.  I'm 37 years old have great energy, walk 2 miles every morning and work out.  Just had a recent MRI that showed there was no new enhancements with my tumor.  Checked with both of my oncologists about me driving and they thought it would be fine as long as it's local and not on highway.  Just curious if anyone out there with GBM 4 has been driving.  My wife is the one who is upset about me driving.  Please let me know.

RE: Driving with GBM 4

by Bruce_Edward on Tue Feb 15, 2011 06:28 PM

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On Feb 15, 2011 6:17 PM MkScott wrote:

I was diagnosed with GBM 4 back on September 21, 2010.  They removed what they could of the tumor and since then I've gone through the radiation and temador.  I'm currently on an Avastin/Temador treatment right now.  I take Avastin once every two weeks and the Temador for 5 days then off for 28 days.  I'm 37 years old have great energy, walk 2 miles every morning and work out.  Just had a recent MRI that showed there was no new enhancements with my tumor.  Checked with both of my oncologists about me driving and they thought it would be fine as long as it's local and not on highway.  Just curious if anyone out there with GBM 4 has been driving.  My wife is the one who is upset about me driving.  Please let me know.

Hi,

My daughter, age 23 (GBM) is driving. Her docs. have given her the green light. She is 3 years out now, but has been driving for sometime now. Do it!

RE: Driving with GBM 4

by ilovemybear on Tue Feb 15, 2011 06:45 PM

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On Feb 15, 2011 6:17 PM MkScott wrote:

I was diagnosed with GBM 4 back on September 21, 2010.  They removed what they could of the tumor and since then I've gone through the radiation and temador.  I'm currently on an Avastin/Temador treatment right now.  I take Avastin once every two weeks and the Temador for 5 days then off for 28 days.  I'm 37 years old have great energy, walk 2 miles every morning and work out.  Just had a recent MRI that showed there was no new enhancements with my tumor.  Checked with both of my oncologists about me driving and they thought it would be fine as long as it's local and not on highway.  Just curious if anyone out there with GBM 4 has been driving.  My wife is the one who is upset about me driving.  Please let me know.

Hey there!

My husband was dx with GBM on August 28, 2009.  He had surgery to remove the tumor on September 2, 2009.  Kevin is still on Temodar, 5 days on/23 days off, as a maintenance medication and will be doing so indefinitely.  He is driving and riding his motorcycle with no problems!  I will tell you he was not allowed to drive for 6 months in the beginning because of the seizure he had, which actually led them to find his tumor, that we thank God for! This may sound weird, considering this demon of a disease he is fighting, but that seizure was a blessing because the tumor was found while it was still very small.  He has no visual or balace issues and he is no longer on anti-seizure medication, as the test they did to see if there has been any seizure activity came back with no signs of seizure activity.  I was a nervous wreck when that 6 months was up, because i just had this terriible fear he would have a seizure while driving, but little by little I was able to let go of that fear. Right when he was allowed to start driving again, he only drove to work and back.  No long distances.  Kind of worked his way up to that.  I had been and I still do most of the driving since we met 20 years ago...not sure why..it just ended up that   I even go with him on motorcycle rides, especially when he is going to go for a ride in the mountains...too beautiful to miss!  But that took me a bit more time to get the courage to do.  Tell your wife she is not alone in her fears.  If she ever needs to talk we are here for her as well!  

Many blessings to you and your wife!

Melissa

RE: Driving with GBM 4

by cjsbama on Tue Feb 15, 2011 06:56 PM

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Hi  My husband had surgery then chemo radiation then 5/23 chemo for a year and with permission of drs drove all that time

Then he had a grand mal seizure and MRI showed some regrowth and no more driving.  It was like cutting off his arms. at 65 he had always been the driver.  He is getting used to it now but it was hard for him.  As his copilot I admit I was a little nervous but he showed no signs that contraindicated driving so I kept my fears to myself and he drove very well.  He still has a 4 wheeler and he can drive that all over the woods whenever he wants so we are looking forward to spring. A guy has to have some fun.

My thoughts are with you both and heaven knows you need some control over your universe.

RE: Driving with GBM 4

by I_love_Gary on Tue Feb 15, 2011 07:07 PM

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Without knowing anything about your tumour location, or your history of seizures, or your cognitive ability, it seems like a dangerous thing for us to just say go ahead and do it.  

My husband had a left side weakness, which did not prevent him from driving at first, and because he had not ever had a seizure, he was never told to stop.  So he did drive as soon as he felt up to it.  As his wife, sitting in the passenger seat, I felt nervous, because I could see that his judgement was off when he parked, he had trouble judging distance from other vehicles, and he drifted to the left on the road, into oncoming traffic.  He drove either very fast or very slow.  He didn't seem to be able to find the appropriate speed for different situations and wasn't aware of any of it. 

I would comment about his problems, and gently suggest that he would have to trust me on it, because he couldn't seem to beleive me.  He thought I was just trying to get him off the road.  That was the farthest thing from the truth, as I would have loved for him to keep that independence, and I wouldn't have to go everywhere he did, but my concerns made him angry.

After a few months of making the effort, he started to realize that I might be right.  One day he drove right into the intersection in front of a car, almost got us killed.  He misjudged how far away the car was.  I didn't make a fuss, I just said "that happens to anyone occassionally", but I was scared.  After that he finally 'got it'.  It wasn't impossible for him to drive, it was simply unwise and unsafe.  I didn't ask him to give up his license, but he stopped driving, and just this past Christmas, he didn't renew his permit to drive.  I deeply wish that it didn't have to be that way.

That's what happened to us, and maybe you can trust your wife to help you assess what your skills actually are.  You can also maybe just sign up with a driving instructor for a refresher course, and they would give you an impartial opinion as to your best course of action.  I know guys don't like to trust the 'little woman' but I'll bet she feels like I do about it.  I hope you really can drive successfully!

Good luck to you.         DL

RE: Driving with GBM 4

by ddhaeder on Wed Feb 16, 2011 12:37 AM

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My husband's tumor was in Rt temporal. Was told not to drive until after completed radiation - as a precaution. Then was given go ahead to resume driving. However knowing that one of his symptoms had been drifting to left when driving - I asked if it would be wise to get his peripheral vision checked at opthamologist. Doctor agreed that made sense. And the outcome was - it confirmed that he had lost upper outer Left quadrant of his peripheral vision. As it turned out - he had been cheating all along when oncologist checked it by wiggling fingers and asking how many. It has been hard for him (and me) dealing with his loss of independence, but would he has adjusted.

RE: Driving with GBM 4

by twhmom on Wed Feb 16, 2011 12:52 AM

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My husband has a similar history as your but he was first dx Aug 2008. His dr's told him the same as yours with the exception. As long as he has never had a seizure. So he has driven for two years up until this past January when he has new growth. His reflexes are slowing down and his memory is not good so they dr's thought now would be the time to stop driving. He is 59 years old and still takes the Avastin every three weeks. But he had two good years of us traveling all over the US and enjoying our cancer-imposed retirement.

RE: Driving with GBM 4

by ilovemybear on Wed Feb 16, 2011 04:28 AM

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On Feb 15, 2011 6:56 PM cjsbama wrote:

Hi  My husband had surgery then chemo radiation then 5/23 chemo for a year and with permission of drs drove all that time

Then he had a grand mal seizure and MRI showed some regrowth and no more driving.  It was like cutting off his arms. at 65 he had always been the driver.  He is getting used to it now but it was hard for him.  As his copilot I admit I was a little nervous but he showed no signs that contraindicated driving so I kept my fears to myself and he drove very well.  He still has a 4 wheeler and he can drive that all over the woods whenever he wants so we are looking forward to spring. A guy has to have some fun.

My thoughts are with you both and heaven knows you need some control over your universe.

This is still a fear of mine that continues to resurface on occasion, my husband being told that he would never be able to ride his motorcycle again.  That is his therapy! Like you, I kept my fears to myself and believe me, that was not so easy to do when he asked me to go for a long ride into the moutains on his motorcycle.  I must have said a million prayers as we rode up into the mountains!  It was all worth it though. That day was so beautiful and it was a time to forget for just a while what we are dealing with.  God willing, I am going to do it again this year.  He had a very thorough eye exam not too long ago, which revealed no problems with any part of his vison.  He has never had balance issues.  He gets MRIs every 2 to 2-1/2 months.  So far, no tumor regrowth.  I can only pray each time he goes out that he is brought home safely to me. If that day ever comes where he is told no more motorcycle riding, I am getting him a 4 wheeler!  Cause like you said, "A guy has to have some fun."  You and your husband enjoy that 4 wheeler this spring! Sounds like fun!

Many blessings to you and your husband!

Melissa

RE: Driving with GBM 4

by jcassick on Wed Feb 16, 2011 04:52 AM

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I agree, first you need to consult your doctor about what is safe.  In New York State you must be 6 month seizure free before being allowed to drive.

My husband was miserable that he could not drive, but was glad because he did not want to endanger anyone if something happened, OR hurt his car.  (His car is a Saturn Sky convertible, and the only car he has really enjoyed).

To answer your question:  He was diagnosed November 2009 with GBM, non-operable, his last seizure was also in November.  Basic treatment regimen, Temodar, Radiation, and then Avastin.  He began driving 6 months later.  He loves driving and his freedom.

I know exactly how your wife feels.  I feel the same way.  After a while of being seizure free, you build up a trust.  I trust that he is stable right now, but at the first sign, he will stop driving.  He would rather be safe than sorry, especially if someone else gets hurt.

Listen to the doctors. I suggest going for an eye exam, because your vision may be affected.  But know yourself and let your driving laws guide your decision.

Take care & be safe,  Joanne

RE: Driving with GBM 4

by passionfish on Wed Feb 16, 2011 04:58 AM

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As you can see by the many responses, every case is different..My sister didn`t drive during the initial 6 week Temodar/Rad..When she did start again, there was some serious riding of the middle line that scared the wits out of me..However, she did get stronger even doing a road trip with my brother and I, to see her beloved Willie Nelson on tour..She even drove after her second surgery and up  until a month before her death..So, it`s all relative ....best wishes and safe driving :)

Adonna    sister of Marilyn dx GBM 7/27/09 died 12/21/09

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