My Story

3 Posts | Page(s): 1 

My Story

by Erob72 on Wed Jan 09, 2019 09:35 AM

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Hello all- I come to this site looking for other GBM surviving patients to share experiences, get advice, and find an outlet that doesn’t add stress to my loved ones. A little about me- I am 46 years old, married for 23 years to my wonderful partner in life and wife who was an oncology nurse before becoming an ARNP. I have three children ages 18,16, & 13. I was diagnosed with GBM4 on 8/14/2016, had surgery 9 days later at UW hospital in Seattle. My surgeon, Dr Silbergeld, was able to get ~95% of the tumor. I was in the hospital for almost 3 weeks doing rehab as I had severe left sided neglect and weakness. I did 30 Proton Radiation treatments at the Seattle Cancer care alliance while doing the standard 42 days of Temodar. I then did 4 chemo treatments of 5 on 23 off. I did not tolerate the chemo well(I pushed for the highest dosage possible) and due to being Wylde type they ended my chemo in March/ April of 2017. I did 8 doses of Avastin in spring/summer and my last 3 scans have been stable. I am at 17 months since diagnosis and continue to have very weak left hand- pretty much useless- but I have regained use of my left leg so I can walk close to normal. I frequently do 4-6 mile walks when the weather allows. I have not had a full blown seizure however my NO believes I have seizure activity that does effect my left leg at times. I have not worked since my diagnosis but was lucky enough to had long term disability although they required I go on SSDI so technically I am retired and disabled. My biggest challenges at this point Is 1)my inability to use my left hand in normal day to day activity 2) I am not cleared to drive and likely never will be 3) Short term memory is basically shot from the radiation & 4) and the biggest one as I have compensated for the others is Fatigue!!! I am surprised to be as far removed from treatment and to not have more energy. I realize this is common but I was s very high energy person when healthy and that has been a big psychological challenge. I am getting better at dealing with it but I still push myself pretty hard hoping I can get some of my old strength/energy back. Probably not going to work but I am a type a person and not pushing myself is way out of my personality. Oh, I also have Avastin induced high blood pressure which I now manage with two different drugs. My daily “cocktail” consists of: Losartan and Aodapine both for blood pressure Vimpat twice a day for anti Seizure Wellbutrin for depression which was an issue pre diagnosis Vitamin B12 and Vitamin D Tumeric Fish Oil CBD oil FECO Medical Marijuana 5:1 THC:CBD at night Smoothie high in antioxidants with chia and Hemp each morning I appreciate you reading my story. Reading this forum for a short while provides a feeling of comfort that the random physical issues and symptoms aren’t unique to me. Best wishes and my prayers to each person and family fighting this terrible disease! PS: For those in the PNW, my NO Is DR Taylor at the Alvord Brain Tumor Center at UW. She is absolutely fantastic. Anyone else being treated there?

RE: My Story

by bobarmstrong on Wed Jan 09, 2019 07:44 PM

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Hi Erob72.  I know Dr. Taylor very well.  She was my NO at Virginia Mason Hospital in Seattle for many years. 

I was diagnosed with Anaplastic Astrocytoma 3.  It was inoperable due to it's location in the left pariatal section of my brain.  I recieved five or six weeks of radiation and six three day chemo sessions that lasted around nine months with BCNU.  I  went back to work almost immediately at my home in Southeast Alaska fixing office machines getting there many times by float plane, jet, and a number of different boats, including my own.  My visits to Dr. Taylor were less than regular. In 2010 they had difficulty finding any record of me.  Recently after 25 years I have moved away from Alaska and retired due to increased seizure activity. 

I think that with Dr. Taylor, UW and newer drugs that you have a better chance than ever.  Please give Dr. Taylor my best regards the next time you see her.  Contact me at bobarmstrong70@gmail.comif you wish.

RE: My Story

by Miles22 on Fri Jan 11, 2019 04:19 PM

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Erob72, I am another PNW brain cancer patient. I was sent to OHSU in Portland two years ago and had surgery to remove as much of the stage IV gliosarcoma tumor as possible. Was told by my neurosurgeon that surgery went well but expectation of life should still be only 2-3 months and he would not release me to go back and work with my college baseball team.

Those were the hardest as I had to hurry to setup all things for my beautiful wife and children to take care of them after I am gone. I followed the same path of radiation and daily chemo followed by 6 months of the 5 days taking chemo 23 days off but hated how it made me feel as I had found a different doctor who released me back to coach and chemo took away my energy far 2 much. So 14 months ago I went against my Doctors advice and stopped chemo as I preferred to live a better life even if that may cause it to be shorter.

From day 1 getting home from surgery I bought into a strict ketogenic diet to not allow the cancer to feed off of sugars or carbs, when into a naturopathic path taking many similiar pills of omega 3, frankenscence, two mushroom types, tumeric, ginger, melatonin and went right back into my normal routine of lifting and running.

I've always loved the work and attitude it takes to win in sports and I look at cancer as my new opponent I need to put everything into thathallenge to beat it. This may not sound right, but I have to give this situation credit to opening my eyes to how beautiful simply life is and the time we have to spend with those we love and do those things that give us such great happiness.

I will be the first to admit that I have zero medical knowledge and no factual backing to the path I chose to beat gliosarcoma, but I have total belief and faith that the path I have chosen to take will give far more great days with those I love.

My thoughts and prayers go to all dealing with cancer issues. Fight the battle

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