Glioblastoma

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Glioblastoma

by tjohnson1992 on Sat Oct 08, 2016 06:21 AM

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Hello. My name is Tatyana Johnson, I am 24 years old living in Columbia, South Carolina. Here is a little bit on my situation. My mother, Tanya Johnson, had been complaining of headaches since early August 2016. Towards the end of August, I started to notice that her speech was slowly changing as well, but I thought it was from all the medication that her primary doctor had her on. On Wednesday, September 28, 2016, she went to a doctor's appt (at Moncrief on ft jackson) for a MRI. She was then rushed to another hospital (Palmetto Richland). I met her at the hospital. After almost two hours of waiting, they finally came in and told us that my mother had a tumor the size of a baseball on the upper left side of her brain. They kept her in the hospital and scheduled a craniotomy forSeptember 30, 2016. On the 30th, her (awake) surgery started at around9:43amand ended around2:30pm. They were able to remove 90% of the tumor. Only strands were left, as my sister and I were told. OnWednesday October 5, 2016, her biopsy came back and we were told that she has Glioblastoma. Not knowing what it was, I did some research and what I found out was shocking. My heart literally broke into a million pieces. I don't know what to do to help my mother life a longer live than what is expected. She has an appt with a oncologist next week and hopefully they will be starting chemo and radiation next month. I'm terrified, and completely heart broken. My mother is only 53 years old and I don't want her life to be cut short. I can not imagine loosing my mother right now or within the next year or so. This is a definite cry for help. Someone please help me!! What other treatment options can she receive? Is it best to go out of the country? Any suggestions on meds? I am desperate and all I can do at this point is pray. 

RE: Glioblastoma

by hana84 on Sat Oct 08, 2016 07:03 AM

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blog run by very knowledgeable man http://btcocktails.blogspot.in great forum too https://www.inspire.com Ask for as many biopsy tests as possible. MGMT status, IDH1 gene, EGFR and more. I suppose her tumor is now kept in parafin. If it was stored frozen it could serve for further tests for possible immunotherapy. Many (if not all) glioblastoma patients are on cocktail supplements. Best is to discuss on the btcocktails blog. Look for clinical trials offered in your country. Also this is a great site: https://virtualtrials.com Do not give up hope. See e.g. https://www.inspire.com /Knersus/journal/information-and-hope-for-brain-cancer-patients/?group_id=200054 There are many survivors out there too. Also there are some cancercompass threads with survivor's stories. Hana

RE: Glioblastoma

by tjohnson1992 on Sat Oct 08, 2016 11:57 AM

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Thank you so much!!

RE: Glioblastoma

by Wifeofmichael on Sun Oct 09, 2016 03:16 AM

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I'm so sorry, my husband is only 57. He has a different kind of tumor but I totally identify with the shock and heartbreak. I remember the day we found out he had a tumor like it was yesterday and my guts still do a flip when I think about it. That was in 2012. We've been through several surgeries and radiation and we have done things that I didn't think were possible and have gotten many blessings and graces along the way. Tonight, just in the immediate moment, it's ok. He's watching football and we're having a nice evening. remembering everything they throw at you in the beginning about brain tumors is much harder when you are scared and dealing with such bad news. Don't lose hope and don't read all the sad stories out there online. Focus the here and now, when you talk to the doctors, bring a notebook with you and write stuff down. Stress does weird things to a person. I couldn't remember my own name some day. This site is really great for support and information. The best to you and your family.

RE: Glioblastoma

by MikeM1970 on Mon Oct 10, 2016 06:38 PM

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hi Tatyana,

My wife is age 46 and was diagnosed a year ago with GBM as well.  She has had her second surgery on August 1st 2016 and is doing Ok.  She's now on Optune and Avastin and hanging in there.  Tired a lot but so am I :-) 

hers was also in the left temporal lobe.  I would suggest to speak to a Brain Tumor center of excellence (you're somewhat near DUke?  They are great and we have been trying to get into their case study for Polio vaccine. 

All the best.

Mike

RE: Glioblastoma

by rmp1399 on Mon Oct 10, 2016 11:34 PM

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I am so sorry for this news. It can be very overwhelming in the beginning. Try to stay focused and positive. I think it is very important to be seen at a major brain tumor center...and if not definitely a neuro oncologist. Send the scans to Duke for another opinion. I know it's a little far away in NC but it is one of the best places for brain tumors in the country. They will have so many options for you. This site is great for questions and support. Reading and getting insight from here helped me so much through my moms battle with gbm. Also try abta.org . (American brain tumor association) Keep us posted how everything goes. Prayers up for you all.

RE: Glioblastoma

by tjohnson1992 on Tue Oct 11, 2016 10:59 AM

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Thank you! I will look into Duke.

RE: Glioblastoma

by aepcopat on Thu Oct 27, 2016 01:32 PM

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On Oct 08, 2016 6:21 AM tjohnson1992 wrote:

Hello. My name is Tatyana Johnson, I am 24 years old living in Columbia, South Carolina. Here is a little bit on my situation. My mother, Tanya Johnson, had been complaining of headaches since early August 2016. Towards the end of August, I started to notice that her speech was slowly changing as well, but I thought it was from all the medication that her primary doctor had her on. On Wednesday, September 28, 2016, she went to a doctor's appt (at Moncrief on ft jackson) for a MRI. She was then rushed to another hospital (Palmetto Richland). I met her at the hospital. After almost two hours of waiting, they finally came in and told us that my mother had a tumor the size of a baseball on the upper left side of her brain. They kept her in the hospital and scheduled a craniotomy forSeptember 30, 2016. On the 30th, her (awake) surgery started at around9:43amand ended around2:30pm. They were able to remove 90% of the tumor. Only strands were left, as my sister and I were told. OnWednesday October 5, 2016, her biopsy came back and we were told that she has Glioblastoma. Not knowing what it was, I did some research and what I found out was shocking. My heart literally broke into a million pieces. I don't know what to do to help my mother life a longer live than what is expected. She has an appt with a oncologist next week and hopefully they will be starting chemo and radiation next month. I'm terrified, and completely heart broken. My mother is only 53 years old and I don't want her life to be cut short. I can not imagine loosing my mother right now or within the next year or so. This is a definite cry for help. Someone please help me!! What other treatment options can she receive? Is it best to go out of the country? Any suggestions on meds? I am desperate and all I can do at this point is pray. 

Hello, my name is Patrick Erwin.   I was originally diagnosed with Glioblastoma in June 2015 after having a seizure at my office.  Believe it or not, I was in an induced coma for I believe 4 days because my body would not stop seizing.  I was released and referred to Johns Hopkins in Baltimore for a follow up to determine what was wrong with me.  I was notified by the surgeon evaluating my MRI that I had Glioblastoma stage 4.  He, like your mom, scheduled a surgery for me 3 or 4 days later.  The surgeon was able to remove the entire tumor, with the exception of what he couldn't see.  I followed up with all the standard treatments of chemo and radiation.  It wasn't long after the treatments stopped that my tumor came back in the same area.  This would have been around June 2016.  My followup surgery was successful again, but unfortunatelly the tumor returned again within a month.

I am now at Duke University particiapting in the Polio Virus trial.  I will say that so far the trial seems to be working.  I would suggest finding out whether your mother would qualify for this trial.  God speed to you.

RE: Glioblastoma

by LaurieSanta on Thu Oct 27, 2016 02:19 PM

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My husband was diagnosed with stage 4 tonsillar cancer in May. Surgery and neck dissection in June removed all visible cancer. He refused both radiation and chemo. I realise everyone and every cancer xase is different, but i strongly recommend removing all but 20 grams of carbs from your mothers diet. That means no sugar, no grains. Remove all processed food from her diet. Start cooking with whole food, real ingredients. Cancer feeds on sugar, and lives in an acidic, oxygen depleted environment.  Focus on alkaline rich foods. If you can find an holistic office near you, I also recommend intravenous vitamin C. At high doses and intravenously, vitamin C acts as a pro oxident creating an oxygen rich environment which kills cancer cells. Read "Fighting cancer with vitamins and anti oxidents." Also, meditate to remove stress and detoxify the body once she starts these cancer killing protocols it will help rid the body of all that garbage. My husband and I both did these things. His first Pet scan was clear. We both lost 40 - 60 pounds and we are healthier than we have been in 30 years. 

RE: Glioblastoma

by Rossini on Fri Oct 28, 2016 08:00 PM

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HI Tatyana, I know how you feel, my husband had surgery for glioblastoma 4th grade on 6th Dec. 20014, nearly two years ago now, we went through a very bad periodo during radio therapy, but now thank God things are going quite well. Our last scan was last week and is stable. All the best for your mum, there are plenty of long term survivors here and reading their stories helps a lot. Take care.
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