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Secondary Synovial Sarcoma on Brain- Information needed..............Please!


#1


Even though this is a rarity it can and has happened to my daughter...
4 weeks ago her epilepsy started to muck up then suddenly changed into psychotic episode which led her to be taken to a hospital where they did a CT scan of her brain... Small dot appeared -approx .43mm round in size..An Mri was needed ... Sadly the Mri was inconculsive due to her poor veins and medication for epilepsy was increased to try and stop what ever it was from happening...
Another psychotic episode a week later led her to be addmitted into hospital where an MRI was performed...
This week she is recovering after surgery to remove the spot...... Yes it did turn out to be a secondery Synovial... 15 x 8 x 3mm in size , fast growing and extremely Rare we are told............... Now

This is what I need your help with.... Has anyone had or known anyone that has had a "WHOLE BRAIN RADIATION"... From what I have read iT sounds scary as far as after affect are concerned... My daughter says she doesnt want them to fry her brain...........So far it was only suggest when she was discharged and Yes we are going to have an offical meeting with the radiologist in the coming week, to find out more...

This is a hard call, so any information to do with "whole brain radiation would be helpful...........CC was DX with Epilepsy in 2008 at 15 and has been dealing with SS since 2009 at 16 and has had many METS and VATS in the last few years , she also redid chemo at the begining of this year because of multipules throughtout her lung , her lungs are now stable.. She is 19 now......................And apart from Cancer the doctors say she is extremely healthy-------- Go figure!!!!!!!!!!!!


#2

I just went through total brain radiation and did one treatment if the gamma knife last week. I have radiation burns but I’m okay. My synovial sarcoma started in my left leg behind my knee in 2007. I had aka and 2 mets to my lung and was was right beside the aorta. I have had chemo and radiation to the one beside the aorta. Then it went to my brain in April. Just finished up my total brain a couple of weeks agao the did the gamma knife last Monday. Too early for scans to see if it worked or not. I had a miracle happen and they said I would not live the weekend the brain mets was found. The family was called in to say goodbye. A miracle happened and one dr was willing to try to save me and removed the large bleeding tumor. There is 3 small ones but hoping radiation will work. I am 41 years old and I still gave my kids to raise and I don’t want to due before my parents and I can’t leave my husband. I am a fighter and I am going to keep fighting. I cherish life and thank God everyday for this month and a half extra he has given me.


#3

Side effects I got was some nausea and headache.i was not confused or tired. They usually prescribe a steroid to use for the side effects and then you get weened off. The most problem I have had is radiation burn on my forehead that looks like a sunburn and it itches. Which I can tolerate. I have fighting since 2007 and I’m going to keep fight for the people who love me and I love them. I also want people to know that even though Ss is scary we have to be strong and fight it.i have had amputation in 2007. Then 3 years later it mets to by lung I did chemo. The next mets went right beside my aorta and radiation killed that one. I had no symptoms at all with the brain tumors until I had a headache that brought me to my knees. I was also diophorectic and my veins were really protruding in my head. I was also throwing up. Called 911. We found the large tumor and was life flighted to Duke Hospital. Was told would not live 2 days. One dr came in and proved the other Drs wrong. Thank you lord for sending him to me. It been over 2 months and radiation is done. The total brain side effects were some swelling in my head and a little nausea but zofran did help. The burns from the radiation made makes me itch and my teeth are showing signs of major issues. But I will handle that when I can. Life is first.oh I have barely any hair left and the scalp is tender in the follicles where some hair is left.