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Cerebellum IMRT experiences -- prior AAIII IMRT patient

westchestpat
Posts: 1
Joined: Jun 2015

Good afternoon,

I've read through many, many of the threads here and my heart and mind goes out to everyone who has suffered a loss. I'm also at a cross-roads right now and would appreciate the board's collective experience:

At 25 years old, in 9/2009 I had a seizure, MRI dx was low-grade glioma in left frontal lobe 6cm x 4cm x 3cm, post-gross total resection pathology indicated AAIII. Expressive aphasia for a few weeks, frustrating, perhaps more so for my family since I could only get out "yes", "no" and "#$@!" at all the wrong times.

At MSKCC, IMRT 60gy over 6 weeks on the left frontal lobe surgical cavity. No chemo, no other treatment. Use of many supplements about during IMRT (radiosensitizers) and after. 

In the initial 9/2009 scan there was an area of concern in the cerebellum/cerebellar. "voxel" sized. 

1/2010 - 5/2015 MRIs every two months at MSKCC left frontal lobe cavity was clear. Unfortunately I had become lax reading the MRI reports and the area of concern in the cerebellar vermis went ifrom "voxel" sized to "sub-centimeter" to 1.7cm and on the May MRI my NO at MSKCC mentioned it as something of "clinical concern". Putting aside frustration and confusion as to how they had not mentioned it before -- the only viable treatment presented is another round of IMRT here at MSKCC. No surgery at MSKCC nor my NS who did the first surgery (too risky, too deep) so no way to know what type of tumor it is but they are guessing it is a glioma from the MRI images and likely grade two due to slow growth/no contrast pick up/no abnormal uptake on PET. 

Does anyone have experiences to share about cerebellar IMRT? NR is planning same 6 week 60gy protocol. I am specifically interested in side effects and deficits. Particularly any longer-term side effects. Now 31, otherwise healthy. 

I ask, because I could push instead to have proton radiation therapy in NJ.

Sincerely welcome any thoughts,

 

f/Re

sadinholland
Posts: 248
Joined: Apr 2011

Hello! My husband is going through a second radiation treat,net right now as well. How are you doing? My husband had his first one in 2010, now this recurrence and radiation which I was against, but he chose to go ahead with it. He is in his second week. I notice some muscle weakness in his legs and sometimes his thinking isn't as clear as other times. please let me know how it goes for you. God Bless!

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