2nd re-occurrence of Anaplastic Astrocytoma
Thank you all the moderators and volunteers for your time. A brief case history of my brain tumor :
1) June2015 : discovery of anaplastic astrocytoma grade 3 due to a seizure 37yr old healthy man with no symptoms
2) Brain surgery at Mass General Hospital to remove the tumor. The oncologist at the time didn’t want to do any follow up treatments (radiation or chemo) as there was IDH mutation and they thought this should be a slow growing tumor.
3) 4-6 monthly MRI scans to follow up. Mar 2017, scans showed tumor regrowing.
4) April 2017, 2nd brain surgery followed by 6 weeks of radiation and a few cycles of Temodar. Only side effects were fatigue, nausea. No symptoms. This round of treatment ended in April 2018
5) Have followed up with MRI scans every 4-6 months.
6) Last week on a bike ride, I had a seizure and ended up at an ER. CAT scan had concerns and so followed up with my neuro-onco at MGH.
7) MRI scan showed tumor growth in 6-7 new places in the brain!!
8) My dr thinks it has all developed in the last 6-8 weeks.
9) They ruled our surgery and radiation as the field will be vast and I am in year 4 since my last radiation treatment.
10) They found a NUV-422 clinical trail offered at Dana Farber cancer institute for which I might qualify. This is a CDK inhibitor treatment. I am now 43 yrs old – still healthy and no symptoms.
11) I am struggling to decide if I should undergo any further treatments that might diminish my quality of life? I have 2 young daughters (15 and 10) and I wish to see atleast one of them graduate high school in 3 years!
We have heard MGH and DFCI are the best in the northeast. Anyone has advice or suggestions? Does it make sense to approach Mayo for 3rd opinion? Thank you!