One patient with glioblastoma still alive nine years later
by flfrog on Fri Feb 08, 2008 12:00 AM
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!
by Jan42006 on Fri Feb 08, 2008 12:00 AM
by Jilby on Fri Feb 08, 2008 12:00 AM
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.
by RosaDawn on Fri Feb 08, 2008 12:00 AM
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
by woztoo on Fri Feb 08, 2008 12:00 AM
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???
by betsy70 on Wed Feb 13, 2008 12:00 AM
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..
by flfrog on Sat Feb 16, 2008 12:00 AM
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If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
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