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jstow07
@jstow07

Posts: 3
Joined: Aug 09, 2018

Share Your Brain Tumor type & Years since Diagnosis

Posted by @jstow07, Wed, Aug 8 7:56pm

Hey everyone I was diagnosed almost 7 years ago with a medulloblastoma in my right cerebellum. Completely removed followed by proton radiation. No reoccurrence since. Just curious what everyone else has and how many years and treatment

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My husband had a craniotomy dx GBM on June 18. Now taking Avastin and radiation. We are just starting this journey. The fatigue is unbelievable. Must have had some cerebral edema as increase of steroids has helped for more periods of wakefulness.

Temador not Avastin

My husband was diagnosed with gbm stage 3/4 in April 2018. Had it removed and has done Temador and rad currently is using OPTUNE and Temador and clinical trial for one week out of a month.

My husband is also on blood thinner shots. John had 2 blood clots. Very small in each of his legs between ankle and knee. John hates the shots and we are going to a dr on Wed to see if he can get off of them and do something different. My husband is also on a large dose of Vimpat for seizures. I believe the seizure was caused by being outside in very high humidity and being dehydrated. This only happened once. I want to take him off the Vimpat (I get asked if he’s having side effects) and try CBD oil that is used to help reduce seizures. Any advice will be greatly appreciated. Blessings.

@sorenjal

My husband had a craniotomy dx GBM on June 18. Now taking Avastin and radiation. We are just starting this journey. The fatigue is unbelievable. Must have had some cerebral edema as increase of steroids has helped for more periods of wakefulness.

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I am so very sorry. Did he have any cognitive loss? That's what my sister in law has experienced. She has not been herself since the seizure before the GBM .

His seizure was after the surgery when he was feeling better and energetic and did too much. Because of his gbm in the frontal lobe there has been slow reaction and not a lot of talking unless he is interested in something. What else would be cognitive? I’m having trouble thinking of all of those things.

@johns66

My husband was diagnosed with gbm stage 3/4 in April 2018. Had it removed and has done Temador and rad currently is using OPTUNE and Temador and clinical trial for one week out of a month.

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12 years ago, before Optune, I kept my wife alive for 3 years in part by taking the supplements recommended in Ben Williams book on his experience in surviving a very invasive GBM for over 10 years. We also made sure that her diet eliminated carbohydrates which contain large amounts of sugar. Sugar causes geometric increases in the growth of brain tumor cells. She also had some success taking Tarceva to limit tumor growth. Things were going quite well with 2 resections and rad and temodar but unfortunately another GBM appeared in same frontal lobe as the original tumor and her age (66) prevented the oncologists from trying to treat both tumors.
I have heard some really good info on the Optune success in extending the lifespan of GBM patients, and also have heard positive things about the results of a Phase III vaccine trial (Tacogen the research firm). I am keeping up with brain tumor research because my son has Phase II diffuse astrocytoma. Seems he has picked up my wife's DNA makeup.
Wish your husband the best.

Richard

I was diagnosed with a meningioma in 2009. It was on the left side near the frontal lobe area with numerous tendrils extending towards other areas. Surgery removed the tumor but some of the tendrils were left because they couldn't be reached without causing damage. I have since been diagnosed with mild cognitive impairment in which executive functions have been damaged. There is now another meningioma located at the top of the brain also in the frontal lobe area, this one is still very small and slow growing. I have both long term and short term memory loss and am no longer able to perform the necessary tasks needed to be employed. I retired in March, 2015.

Hi I was diagnosed with a craniopharyngioma in 2015. I was treated with proton beam radiation and the tumor has not reappeared.

I was diagnosed with GBM in April 2017 and given a 2 year life expectancy. I had a crainiotomy and the standard of care – radiation and temodar and now on the maintenance temodar of 5 days every 28 days. I have just completed month 15 of that plan. I will be on it for 2 years. My main complaint is the headaches. I have them 24/7 with some days being more severe than others. MRI every 3 months with no sign of reoccurence.

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@barbaraak

I was diagnosed with GBM in April 2017 and given a 2 year life expectancy. I had a crainiotomy and the standard of care – radiation and temodar and now on the maintenance temodar of 5 days every 28 days. I have just completed month 15 of that plan. I will be on it for 2 years. My main complaint is the headaches. I have them 24/7 with some days being more severe than others. MRI every 3 months with no sign of reoccurence.

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That is the same plan as my husband is on currently and he was diagnosed April 2018. John does not have headaches though. What milligrams are you taking for the week, daily dose?

I was diagnosed with a hemangiopericytoma in June 2017. I had surgery in July 2017 and they removed as much of the tumor as they could. In November/December I received 6 weeks of proton beam radiation. My first follow up MRI was in April 2018 and there was no new growth. My next MRI will be in October.

I was diagnosed with an intraventricular pilocytic astrocytoma in October 1992. I had surgery in November 1992 at the Mayo Clinic in Rochester, MN. This tumor was in the center of my brain. It was located inside my left lateral ventricle. I was SO fortunate that it was benign. I required no additional treatments. Unfortunately, I started having grand mal seizures, again, in 2014. Sadly, not one doctor I've seen can tell me why. I feel like I'm in uncharted territory.

Hello, I had a grand mal seizure at 4am on my birthday 4/11/2016 and was lucky I had friends with me in my room on vacation. I woke up in hospital in Chicago and my family had already had flown in and were there when I came through. Knew it couldn’t be good! Eleven days later taken home to MN to The Mayo in Rochester by ambulance and they quickly figured out it was a tumor that caused the seizure and two days later I had the craniotomy. A couple weeks after I got the call. Lateral Right temporal lobe AA3. Had standard radiation and chemo ( temadar). MRI every 3 months now and so far so good. I experience some fatigue and tinnitus but I can handle that! Next MRI on 10/2. Thank god for the staff, nurses and doctors at the Mayo! I also love this community and try my best to help and give back what I can.

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@yags182

Hello, I had a grand mal seizure at 4am on my birthday 4/11/2016 and was lucky I had friends with me in my room on vacation. I woke up in hospital in Chicago and my family had already had flown in and were there when I came through. Knew it couldn’t be good! Eleven days later taken home to MN to The Mayo in Rochester by ambulance and they quickly figured out it was a tumor that caused the seizure and two days later I had the craniotomy. A couple weeks after I got the call. Lateral Right temporal lobe AA3. Had standard radiation and chemo ( temadar). MRI every 3 months now and so far so good. I experience some fatigue and tinnitus but I can handle that! Next MRI on 10/2. Thank god for the staff, nurses and doctors at the Mayo! I also love this community and try my best to help and give back what I can.

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I'm so happy for you!

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