Optic Nerve Astrocytoma: Long term survivor-negative radiation effects

Posted by renmart69 @renmart69, Sep 16 12:36pm

HISTORY: I am an otherwise very healthy 57 yr old male who had craniotomy surgery & radiation therapy for a pilocytic astrocytoma (glioma) located in the optic chiasm in 1989 at UCSF. Results of surgery were sacrifice of left optic nerve (no eyesight in left eye) and no olfactory (smell). Very lucky as I have lived for 35+ years with no issues.
PRESENT CONDITION: Partial loss of right eyesight in right side of right eye. (only eye i see from). MRI shows very slight increase in remaining lesion and appears i am having bleed(s). Iron residue on MRI. Bleeds have contributed to pressure/damage on the right optic nerve. Have consulted with UCSF, Johns Hopkins and MD Anderson. Aside from follow up MRI's appears no options for high risk surgery (eyesight would be immediately impacted) or immunotherapy. (spinal tap showed no dna for possible tumor growth. Dr's suspect increase in lesions is not new tumor growth and I am dealing with the long term effect of radiation therapy-radiation necrosis of the remaining tumor and radiation impacts to the vascular area in the optic chiasm causing the bleeds. ANY TUMOR SURVIVORS WITH ANY EXPEREINCE IN THIS ARENA? ANY RECOMMENDATIONS WOULD BE GREATLY APPRECIATED. Otherwise this is a slow road to blindness, Thanks you!

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Colleen Young, Connect Director | @colleenyoung | Sep 26 7:16pm

@renmart69, while I'm sure you are relieved to hear that the lesions are not indicating new tumor growth. However, accepting that the treatment (radiation) that has led to long-term survivorship may also be the slow road to blindness.

Do you notice the bleeds? Is there any pain associated with them?

edivebuddy | @edivebuddy | Sep 26 8:03pm

Unfortunately I have 5 years of dealing with this very issue you're asking about. My first signs were radiological and we waited almost 3 months for the follow up Scan. The day of the appointment I lost all my vision to the Left both eyes . Pentoxifylline vitamin e followed by bevacizumab because my oncologist said it was the most effective. Took that little over 3 years. The last Year and.Half I'm back on the pentoxifylline and vitamin e because of extensive dental surgery and after the year everything was still under control so that's where I'm staying.. It's more a hassle because it's twice a day, but there are no side effects for me. And the bevacizumab while tolerable was super annoying.

I also added boswelia and have been taking that the entire time to avoid steroids.

My necrosis has beasts stable my bleeding I can't tell, the hemosiderin always looks a little different to me. I had a massive brain bleed after the radiotomy and the vessels were definitely leaking in the begining. I get perfusion MRIs and My PET scans capture most of the area of interest and both are useful in monitoring cerebral radiation necrosis.

The craziest if things about this is the DOC is to do nothing until you're symptomatic. Huge medical problem with that. By the time you're symptomatic it too late. Brain damage is nearly universally permanent. Had I started the pentoxifylline, vitamin e, in September at the first radiological signs of possible necrosis/progression maybe I'd still be able to see to the left. 1 treatment of costs More than a lifetime of my current treatment.
Both treatments are really the only real option you can do hyperbaric oxygen therapy. It a huge time drain and no real way to do it forever. The others would be surgery again be it LITT or standard. The are no FDA approved treatments for cerebral radiation necrosis.