Glioblastoma (GBM 4) - Recently Diagnosed

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Glioblastoma (GBM 4) - Recently Diagnosed

by andrew76092 on Tue Jun 20, 2017 01:11 AM

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I was recently diagnosed with a GBM 4 on May 25, 2017.  A few days later, the tumor was resected (visually 100%) by Dr. Sabatino Bianco in Arlington, TX.  I transfered my treatment to Dr. Pan at UT Southwestern Medical Center in Dallas and will begin the standard chemo & radiology care on June 27.  This will include 6 weeks of chemo & radiology (7 days of chemo and 5 days of radiology).  From there, they will stop for 4 weeks, take a baseline, then restart again for a shorter time. As for clinical trials, two were possible but I did not qualify due to my blood type and tumor types.  

I'm reaching out to this forum to ask a few questions about treatment, I'm really very nervous but am mentally prepared for the next steps.

1) Regarding radiation, I hear this "ages" the brain by 10 years.  While I tell my family & friends that I will become 10 years smarter, I know the reality is that the brain will simply become older.  Can anyone confirm if radiation causes any loss of cognetive ability?  Will I become "slower"?  Will my speech be impacted? I've read and heard mixed results and would read results from others.

2) The chemo I'll be taking is Temodar, 140mg orally.  I also know there are side effects which are vast, the two I'm really concerned about are nausea and tiredness.  They have prescribed Zofran, 8mg orally but nothing for the fatigue.  Are there any suggestions that would address my two concerns? With this type of medicine, would there be other prescriptions others have taken to quell the effects?  

I'm aware this is an agressive cancer but I'm prepared to take it on, full force.  I've come to the resolve that I'm going to die one day, until that day, I'm going to live life to the fullest.  I'm surrounded by a great support network that includes family, friends and community resources (including this forum).  

Thanks in advance, I look forward to receiving additional information & suggestions!

RE: Glioblastoma (GBM 4) - Recently Diagnosed

by ottoh on Tue Jun 20, 2017 01:53 AM

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On Jun 20, 2017 1:11 AM andrew76092 wrote:

I was recently diagnosed with a GBM 4 on May 25, 2017.  A few days later, the tumor was resected (visually 100%) by Dr. Sabatino Bianco in Arlington, TX.  I transfered my treatment to Dr. Pan at UT Southwestern Medical Center in Dallas and will begin the standard chemo & radiology care on June 27.  This will include 6 weeks of chemo & radiology (7 days of chemo and 5 days of radiology).  From there, they will stop for 4 weeks, take a baseline, then restart again for a shorter time. As for clinical trials, two were possible but I did not qualify due to my blood type and tumor types.  

I'm reaching out to this forum to ask a few questions about treatment, I'm really very nervous but am mentally prepared for the next steps.

1) Regarding radiation, I hear this "ages" the brain by 10 years.  While I tell my family & friends that I will become 10 years smarter, I know the reality is that the brain will simply become older.  Can anyone confirm if radiation causes any loss of cognetive ability?  Will I become "slower"?  Will my speech be impacted? I've read and heard mixed results and would read results from others.

2) The chemo I'll be taking is Temodar, 140mg orally.  I also know there are side effects which are vast, the two I'm really concerned about are nausea and tiredness.  They have prescribed Zofran, 8mg orally but nothing for the fatigue.  Are there any suggestions that would address my two concerns? With this type of medicine, would there be other prescriptions others have taken to quell the effects?  

I'm aware this is an agressive cancer but I'm prepared to take it on, full force.  I've come to the resolve that I'm going to die one day, until that day, I'm going to live life to the fullest.  I'm surrounded by a great support network that includes family, friends and community resources (including this forum).  

Thanks in advance, I look forward to receiving additional information & suggestions!

Sorry to hear you have this, but I like your attitude!! My wife has had two resections and is, for the last year glio free! After doing the standard treatment, chemo and radiation, I think we would have passed on the radiation, BUT, if you have a recurrance, most clinical trials will not admit you unless you have gone throught the standard protocol. That's an important thing to keep in mind. As far as the clinical trials, there are many to look at and new ones open up all the time. You just have to do the research. You might look to Duke University for the polio trials or as we did at MD Anderson with the immunotherapy trials. I will say, that if you do the radiation, make sure is is the newest machine there is in your area. We found that some machines are much better than others that are not as percise with the radiation beam and it cann affect a larger part of your brain. Temodor is the standard protocol but will work better if you are MGMT metholated. My wife was really fatigued for months after the radiation but we would get up every day and walk and it seemed the more we do, the less fatiged she became. You will be tired, but your brain just needs time to heal, so enjoy the sleep! She used to sleep 12 to 14 hrs a day but now sleeps 8 to 9 a day. We used some THC and CBD oils to help with appitite, nausea, sleep and there are clinical trials going on right now that are showing that these oils combined with Timodor are helping kill the glio cells. Again, you will have to have your research team verify all of that! ;-))  I think a little oil, a little chemo/ radiation, a little laughing, good vibes prayers from all your friends, ( we never realized hope much love there is out there) and a little luck, you'll be just fine! Good luck and all our aloha.  

RE: Glioblastoma (GBM 4) - Recently Diagnosed

by andrew76092 on Tue Jun 20, 2017 02:20 AM

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This is great informatino Ottoh!  Thanks very much.  I'm encouraged to hear your bride has the year behind her!  Great information on the clinicals, I had no idea of the radiation requirement(s), at this point, I'm following everything suggested with the standard of treatment so that will be part of it.  UTSWMC has a good portal that I can review various clinicals, it has become something I review every morning :)

I didn't even think about equipment but it makes sense as I'm sure these machines cost a small fortune.  I consider myself fortunate that the UTSWMC locale where I'll receive treatment just opened two months ago...I don't think there is anything in that building older than those two months, thankfully!  

Mentally, I'm prepared for the treatment.  As a 44 year old male, in generally good health, I plan to continue my workout activity daily, listening closley to my body and rest when needed.  

I actually just ordered my CBD oil which should be here in a few days.  To me, this is a no-brainer (pun intended) as part of my treatment.  The evidence I've seen suggests CBD oil can't hurt, why not, right?  As for the THC, I'm sticking with the 0%, at least for now.  I live in Texas where THC is illegal, plus, while I'm sure this can be debated, I'd prefer to stay away from the "high". Perhaps this will change down the road but for now, I'm taking it one step at a time.

For what it's worth, 10 years ago, I was literally dying from everything but cancer.  I was a 410 pound morbidly obese man, deep in the thwarts of addiction (alcoholic & prescription opiate addiction), high blood pressure, sleep apnea and chronic depression.  I say this because today, thankfully, I'm celebrating my 5 years of sobriety, 170 pounds, perfect blood pressure, no depression or sleep apnea, completely opposite.  I tell my family that if I can "beat" those odds, I will beat these odds.  Come at me cancer, you've got no chance!

The best to your and yours..here's to another year!  Thanks again for the information, it had high value to me as I begin my survival battle!  Cheers!

RE: Glioblastoma (GBM 4) - Recently Diagnosed

by Dodgerblue on Mon Jun 26, 2017 01:03 PM

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Hi Andrew,

   It sounds like you have already overcome a lot!  For your age, your should be able to withstand radiation and Chemo quite well.  Radiation shouldn't age your brain 10 years.  Whole brain radiation may have this effect, but if they are focusing radiation on tumor cavity and margins it shouldn't.  Your will be tired and your short term memory will be lousy during radiation, but will start to improve with in 2-3 after treatment ends.

Temador is a mild chemo compared to IV chemo's used against other types of cancer.  Antinausea meds are effective, but can be constipating, so you may want to take something to counteract that.  I'd have a loss of appetite during my 5 days on and a couple days after, but otherwise no major issues.  

 If you are suffering fatigue, exercise is the best way to combat it.  I'd force myself to the gym after my radiation treatments, then go home and take a 2 hour nap.

Cleaning up your diet of all processed foods will also help your energy.

If your appetite really suffers, you may to add a bit of THC to your cannabis oil cocktail to stimulate it :)

It sounds like you have the right attitude, which is the most important thing.  Any questions don't be a strainger,

Dodger

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