Hello,
First of all, thank you all for the time and work put into this site. I wish I had thought to look for it when my sister first got sick. This is the scariest stuff and it helps to see other families fighting and winning.
My sister was diagnosed with Astrocytoma 2 / 3 back in April 2016 which was determined to be Anaplastic Astrocytoma 3.
I don't understand what she meant but she said her tumor had "favorable" mutations.
She had 95% removal of the tumor at Sloan-Kettering, then moved on to radiation and chemo. She finished chemo in September(?) of last year.
All of her MRIs look good and her last one on 12/18/2017 was still clear.
My questions are:
1) Right now she is not really doing anything for maintenance. Would it be worth looking into a Ketogenic diet or meditation or anything? I would like to have her try the ketogenic diet, but I have read mixed things about it. Also, I want to push her to do this, but it's not my choice and it's hard to remember that.
2) I've read that Asctrocytoma conveys a huge risk to siblings and a lesser risk to parents. Would it be worth having my brother and parents get an MRI?
Thank you.
-Ray
Hi Ray,
ReplyDeleteI would have to guess that by "favorable mutation" she meant her tumor had the IDH1 mutation. For adult grade 2-3 astrocytomas, having this mutation is favorable, and not having it is usually unfavorable.
By "September of last year", do you mean 2017? How many cycles of chemotherapy did she do. I'll assume she was on temozolomide (aka Temodar, TMZ).
Ketogenic diet could be helpful, but is challenging to stay on for any length of time, as the proper ketogenic diet is a form of glucose starvation, which means limiting your daily intake of carbs to virtually nothing (20-50 grams per day). The body goes into ketosis only when carbohydrates are severely restricted. There are modified, somewhat more balanced diets that have achieved the same therapeutic effect in mouse models.
https://www.ncbi.nlm.nih.gov/pubmed/26631612
I've heard the stories of at least 300 brain tumor patients and caregivers over the last five years, and in only one case was there also a sibling with the same diagnosis. The risk exists, but it can't be huge.
From the list of labels running down the right side of the blog, clicking on "IDH1", "lower grade glioma", "cocktails_grade_2", "cocktails_grade_3" etc. will help get you up to speed on past discussion concerning grade 2 or 3 astrocytoma (which are closely related).
DeleteThank you, I appreciate the information.
ReplyDeleteThe risk of a genetic cancer predisposition syndrome with an index case of anaplastic astrocytome is very very very low, unless there is in the pedigree a high cancer incidence which might suggest one. I would even not recommend an MRI in a twin brother or sister.
ReplyDeleteHi SVG. Thanks for the response. I did a little bit of digging and found some info I wasn't aware of. My great grandmother on my father's side had either breast or colon cancer in her 80s. I know my dad had many (9?) polyps in his 50s. No cancer though. My dad's father had skin cancer (non melanoma). He was treated successfully and died in his 70s. Mom's side is clear. Not sure if this could be a syndrome but it seems like alot of cancer.
ReplyDelete