GBM Tired, Sleeping alot between treatments

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GBM Tired, Sleeping alot between treatments

by flfrog on Fri Feb 08, 2008 12:00 AM

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I first want to say thanks to all who post on these boards.  My dad 54 had 90% ressection on 11/16/07 and was dx with a GBM IV.  He was given 6 to 18 mths with rad/ chemo combo.  These boards have been a blessing becuase Dad changes daily it seems and I am always able to find information on here to help me uderstand / cope with what's going on.  So thanks!

 My question now is how do others respond in between treatments?  My dad completed 6 wks of Proton Therapy with concurrent 42 days of Temodar on 1/16 and other then HUGE mental issues (believed to be caused from medication / reaction to radiaiton) he was fine.  He had no physical reactions to either except his hair fell out in the place they did the radiation.  However within a week of stopping the chemo / rad he started getting tired. The following week he started getting nausea.  Is that common to get sick once you're done with treatment?  He had an MRI on 1/22 and there was no change in the tumor at that time and they are not doing another MRI until mid March.  He seems to daily get more tired and is taking frequent naps.  Is there any way other than a new MRI that they can tell if something is going on with Tumor?  He goes tomorrow for blood work and has his follow up oncolgy appt 2/18 to start chemo for the 5 day cycles.  I'm concerned that if he is sleeping and nausea now, what's this next round of chemo going to be like for him.

 I didn't know anything about this type of Cancer before this and I hate it!  It takes away their life and while I'm thankful we have this time together (I'm his full time caregiver) I hate that his life has changed so much.  He was a truck driver and now he can't ever drive a car again, it's been such a blow and I struggle with how to help him cope because saying I'm sorry all the time is starting to sound hollow.  God bless you all who are surviving or helping other survive Cancer!

RE: GBM Tired, Sleeping alot between treatments

by Jan42006 on Fri Feb 08, 2008 12:00 AM

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I had to stay on a low dose of decadron for around 6 months after chemo due to fatigue and nausea. Decadron has it's own side effects, but it made a big difference in my quality of life. Ask your doc if they would be willing to try it. The radiation does still work for awhile after the dose has been given...

RE: GBM Tired, Sleeping alot between treatments

by Jilby on Fri Feb 08, 2008 12:00 AM

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Hi,

My dad had extreme fatigue for about 6 weeks AFTER radiation was finished. He did not do the chemo and part of it was he didn't want to completely run himself down w/all those drugs/treatments. After radiation was complete...he also started weaning himself off the steroid...so I contributed the fatigue from that as well. However, that did subside and now he's doing good. He still needs a daily nap and he does sleep a longer night than before this happened to him. But all in all, it did get better for him. He still has chosen not to take the oral chemo. So I don't have much advice to give you after the radiation part is complete.

My dad is 64, also with a GBM 4...diagnosed in July 2007. Still doing OK. I'm sorry about your Dad, it's so hard to watch our parents grow up. Your Dad is still a young guy too....so I am praying he can be strong through these treatment. Lucky he has such a caring daughter.

Jill

RE: GBM Tired, Sleeping alot between treatments

by Jilby on Fri Feb 08, 2008 12:00 AM

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One more thing...my dad was also a truck driver. And his life has changed so much because he can't drive anymore either. However, he is able to drive a car? Is your Dad forbidden to drive a car too? I think taking that ability away from a person is such a horrible experience. My dad was restricted to drive for 3 months after his last seizure...so it was about a total of 6 months before he got in the car again. I think that helped with his mood so much. Cancer sucks though...I agree!!!!

RE: GBM Tired, Sleeping alot between treatments

by RosaDawn on Fri Feb 08, 2008 12:00 AM

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My Dad was a Truck Driver for 30 years and it just about killed him to think that he would never drive again.  He has good days and bad days and we are lucky because he knows when he is having a bad one and he won't drive his pickup.

This monster changes everything in the lives that have it.

Rosa,  Dad dx 02/07 right frontal lobe GBM IV

RE: GBM Tired, Sleeping alot between treatments

by woztoo on Fri Feb 08, 2008 12:00 AM

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On 2/8/2008 RosaDawn wrote:

My Dad was a Truck Driver for 30 years and it just about killed him to think that he would never drive again.  He has good days and bad days and we are lucky because he knows when he is having a bad one and he won't drive his pickup.

This monster changes everything in the lives that have it.

Rosa,  Dad dx 02/07 right frontal lobe GBM IV


IT sounds like no surgery in these cases.If so why not surgerey???

RE: GBM Tired, Sleeping alot between treatments

by flfrog on Fri Feb 08, 2008 12:00 AM

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When he was released from the hospital they said he couldn't drive, when we had the last follow up appointment with the neurosurgeon he said he could ride a bike and that was it.  My dad asked the oncologist and she said dad can't drive until he's been on the anti seizure medicine for a year?  I'm going to try to get back in touch with the Neurosurgeon and see if he will ever be able to drive again, I asked my husband (4th year med student/ worked for Neurologist for 3 years) and he said he thought it was due to the remaining tumor location at the corpus callosum at mid-brain ( I think).  He also hasn't seen the neurologist since he became mentally stable again so it maybe something they will consider, I'll definately check because I think that would really help dad's spirits but now with as tired as he is, I don't know that he would want to drive anywhere.  Today I woke him at 7:45am for an appt, he slept off & on in the car, in the waiting room until 10am then we ate brunch and he was back in bed by noon.  He woke up at 5pm ate dinner and then went back to bed at 9pm.  I really hope he gets more energy as the above post.  He had stopped taking steroids midway through the rad. as they thought that was causing or irritating his mental issues which turned out not to be the case.  The 1/22 MRI showed the swelling had gone down since his post surgery MRI..

RE: GBM Tired, Sleeping alot between treatments

by betsy70 on Wed Feb 13, 2008 12:00 AM

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On 2/8/2008 flfrog wrote:

When he was released from the hospital they said he couldn't drive, when we had the last follow up appointment with the neurosurgeon he said he could ride a bike and that was it.  My dad asked the oncologist and she said dad can't drive until he's been on the anti seizure medicine for a year?  I'm going to try to get back in touch with the Neurosurgeon and see if he will ever be able to drive again, I asked my husband (4th year med student/ worked for Neurologist for 3 years) and he said he thought it was due to the remaining tumor location at the corpus callosum at mid-brain ( I think).  He also hasn't seen the neurologist since he became mentally stable again so it maybe something they will consider, I'll definately check because I think that would really help dad's spirits but now with as tired as he is, I don't know that he would want to drive anywhere.  Today I woke him at 7:45am for an appt, he slept off & on in the car, in the waiting room until 10am then we ate brunch and he was back in bed by noon.  He woke up at 5pm ate dinner and then went back to bed at 9pm.  I really hope he gets more energy as the above post.  He had stopped taking steroids midway through the rad. as they thought that was causing or irritating his mental issues which turned out not to be the case.  The 1/22 MRI showed the swelling had gone down since his post surgery MRI..

Hi, Sometimes if someone has been on decadron for a while, it can suppress the body's natural production of steroids(cortisol or adrenal hormones) so that when the decadron is stopped too quickly, the body is in a relative state of adrenal insufficiency, which can cause extreme fatigue and nausea, among other symptoms, The body normally makes the equivalent of 0.75 mg of decadron daily, which it needs for normal functioning. The solution is to have your doctor check a cortisol level to see if adrenal insufficiency is the problem. Or, alternately, he can go back on a low dose of steroids and taper of very slowly. The following is a link that may be helpful: http://www.aann.org/ce/pdf/jnn04-12c.pdf Of course, nausea and fatigue are non-specific symptoms which can also result from radiation and chemo, as well as from the tumor itself. However, if the scans are showing decreased edema and stale tumor, the adrenal insufficiency is definitely worth looking into. Hope that helps.

RE: GBM Tired, Sleeping alot between treatments

by flfrog on Sat Feb 16, 2008 12:00 AM

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Dad was taking the steroid, 8mgs a day 4 in the am and 4 in the pm, but midway through they cut it to 2mg am/pm and then a week later only in the monring and then a week later he was off.  They did a cat scan 12/28 and the swelling was fine and the MRI 1/22 showed the swelling had continued to decrease.  We see the oncologist Monday and I will definately mention that to her.  It's bad enough everything tastes bad but then too get nausea too.  He vomited today and I am so concerned it's a re-occurence but I am staying hopeful.  Thanks all!
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