Gliobastoma Multiforme - Any ideas?

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My dad was diagnosed with a grade 4 gliobastoma multiforme December 2009. Had surgery, 6 weeks of radiation and 2 years of chemo for the first week of every month. He has been off chemo since December 2011. Recently in hospital as he was struggling with basic tasks and the ability to express himself. He was tired a lot and we thought the tumour had come back. After several tests and scans, including MRI, PET, MRA to name a few, the doctors are confused as to what the cause was. No tumour present, yet inflammation in the tumour site. Doctors have been very clear in saying although there is no tumour present, the cancer lives in the cells of the brain. He recovered quite soon afterwards and although tests came back negative for seizures, he is now on 2 types of anti-seizure medication as they believe he might have had a series of mini tumors, but still don't know for sure. We are concerned as the symptoms he was presenting with were far worse than the symptoms when he had a 5cm tumour. Has anyone heard of similar occurances? What does this mean?

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CharlieBrown

Sorry, Series of mini-seizures, not tumors.

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siblingof
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It's great your dad has survived so long tumor free. I would wonder if radiation damage was the cause of his symptoms. It can show up long after the fact.

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johngiustino

Are you being treated by a neuro-oncologist? If not, getting a consultation from an experienced NO may be helpful. In my experience a neurologist + oncologist does not equal a NO.

-JG

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jon4156

I would seek another opinion at a different hospital, if possible. It would be nice to have another set of eyes look over the test results.

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CharlieBrown

Thank you. We are blessed to be so fortunate with dad's health. From the initial diagnosis we're all happy with the outcome to date. I will look further into the effects of radiation, to be honest it's not something that has crossed our minds. Dad has appeared to be pretty laid back about everything so far, but definitely not one to express his feelings at the best of times. It was interesting to find out after his last trip to the hospital that he keeps a diary of how he feels from day to day, whenever he feels abnormal he keeps note. There have been a few other episodes, mostly starting about 4 months after he finished his chemo, but not very often. He's recorded feeling vague for half an hour here and there, occasions where he's got lost going for his morning walk, and slight headaches. Admittedly he was quite embarrassed that mum approached the subject when he were there. Dad's always been a tough nut, and I think it's odd for us, but mostly him, when he feels like he's not coming across to be the one in control. Sorry for the essay, it's nice to have someone to talk to xx

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phyllischarles

Your post has been so comforting to my husband. He was diagnosed 4 weeks ago. He had surgery on October 25, 2012. 99% was removed he starts 6 to 8 weeks chemo & radiation on Monday. This is happening all so fast that we don't know what to expect or really what to dream or plan for. We know everyone will respond differently but your posts gives us hope.

Thank you Phyllis & Charles Rice

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Luvingwife

Charlie Brown:

Our experience is similar to your dad's in that my dh also had a period of time when it seemed he had symptoms of tumor growth (no seizures, though) and all the scans showed no tumor progression. The dr concluded it was/is damage from radiation (in 2004) and the years of differet chemo treatments. I agree with the other poster who recommends a neuro-oncologist, if you are not already with one. Also keep in mind that the anti-seizure drugs cause some drowsiness and I believe that this also contibutes to the confusion and inability to focus and engage that we see now. Also, the chronic fatigue is an issue that effects his quality of life. Franklih, dh is much more disabled now than when he was first diagnosed, when he was having radx, or any of the chemo treatments. The disease and its treatments have had a cumulative effect.

Good luck,

Laurie V

dh diagx gbm4 May, 2004; disease currently 'stable'

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