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GBM - WHO Grade IV, patient needs your help!

Alex_George
Posts: 1
Joined: Sep 2016

On June'15 my brother was been diagnosed with a Brain Tumour (GBM IV). The tumour's location is on the left frontal lope, it was about 7 cms. big. Later on there was a resection surgery done, followed by 1 month of radiation therapy & 1 year of chemotherapy (TMZ). At present he has finished his chemotherapy, and has been put under monitoring.  The latest MRI shows no sign of the tumour, its completely wiped off. Is there any therapy or treatment to avoid a reoccurrence ?  Anything to maintain the  current progress ? Request all of you to please post your comment down below, anything least u'll can do please.

Tallie
Posts: 3
Joined: Sep 2016

I have stage IV Glioblastoma brain tumor.  Have been looking for a chat site and there never seems to be anyone in this one!

 

AZPat99
Posts: 1
Joined: Sep 2016

I was diagnosed on June 27, had surgery to remove a right parietooccipital mass on July 2.Begining Aug 1, I have had 15 Radiation treatments and 21 days of oral Chemotherapy. I am currently on a 4 week hiatus to allow my body to heal, but I return on Monday for an MRI, more tests and meetings with the Radiaton Oncologist and one with the Neuro Oncologist when they will determine my further treatment.

Happi1
Posts: 3
Joined: May 2017

My husband was dx with gmb 4 terminal and 8/2016 . Doing 5 days a month of chemo . Had radiation . And now just rpt mri's. It's been a very hard journey for both of us . He has lost feeling and strength in left arm and leg . we depend on God and Prayers now.. 

4oregonz
Posts: 4
Joined: Jan 2015

Hello Alexand others.....I do not have a Gioblastoma.  I just had a 2nd craniotomy < 2 weeks ago for recurrence of an Oligodendroglioma Stage 2.  All I can say is that this could have been avoided had I gone for a 2nd opinion and had UCSF follow my MRI's.  I would suggest that your family seek a 2nd opinion.  I am an Oncology RN and have heard so many stories where things could have been prevented.  NOT saying this is always the case.  BUT research your brother's tumor type and know where the best cancer care centers for HIS type of tumors are!!  Probably a teaching hospital, where there would be SEVERAL sets of eyes looking at everything!!  Make an appointment OR call and ask them to review his tests/scans, etc.  Most MDs would not (and should not) be offended.  Many hospitals and doctors claim to be affiiated with larger institutons...ask to go there!  Actually as a working medical professional, I believe a good oncologist would send you for a 2nd opinion!  WEB MD has info on a 2nd opionion here:  http://www.webmd.com/cancer/features/cancer-when-do-you-need-a-second-opinion-and-who

Also the National Cancer Institute in the last several years, has established an algorithm for many cancers and their treatment protocol: https://www.cancer.gov/ On this site, you can also look for INTERNATIONAL clinical trials. Without clinical trials we would be no where. I would not be here! For many of us, living with cancer is like living with any other chronic condition. I was told 8-10 years and here I am at 11 and a 2nd surgery and facing more chemo...ugh! The National Brain Tumor Society has much assistance also! http://braintumor.org

Wishing you all the best of luck on this journey. Advocate for your brother AND yourselves. Caregivers need help also! Just be as informed as you can possibly be...even if you feel like you are being a pain in someone' s [content removed by CSN]...then there is nothing to regret later...ask your questions...take notes, if need be, ask the MD to record the conversations! 

I would like to hold your brother and family in thought and prayer iif okay with you!

 

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