andrew76092's Message Board Messages

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In the next couple of weeks, I'll be starting Optune therapy. One of the requirements is to keep your head shaved, down to the skin, without any stubble.  

I have thick hair with no balding as it is and am wondering if there's a recommended razor or process to use. I understand that a skin tight cut will be needed so I forsee myself shaving a few times a week.

I appreciate any and all suggestions on type of razor(s), process(es), brand of razor(s), etc.  

Thank you!

Hello everyone!

I had a GBM4 resection on May 28, 2017 and started radiation and chemo this past Tuesday (today is day 4).  I'm still having headaches, long lasting and dull...the kind where they are just simply bothersome.  That said, I have a few questions I'm hoping to answer:

(1) Do narcotic meds help or make it worse?  I'm talking hydrocondone, oxy, fentanyl, etc.  My NO nurse said taking these opiate based meds actually make the pain worse.

(2) Is my only releif of pain going to be the steroids they had me on in the hospital?  The steroids that most people complain about, I'm sorry, I can't recall the name.  FWIW, I'm not taking any steroids at the moment but the doctor suggested I do if and when I get headache pain.

Any information about alternate (BUT STRONG) pain meds would be helpful.  I'm sick and tired of dealing with this headache!

Thanks in advance!

I appreciate your experience and will hope to be "fast tracked" as well.  Five months!  I'm sure there is/was a reason for this tardiness.  Thanks again :)

On Jun 22, 2017 4:35 PM modesta wrote:

when we filed for my husband, I was shocked at how easy it was.  I was told that GBM's almost always qualifiy.  Go for it!!

Great!  I'll be sending in the paperwork today.  Hopefully I'll hear back by the end of summer :)  

Hi there everyone!  I'm interested in learning if anyone has had any success in getting qualified for SSD benefits?  Any tips for making this seamless?  I've started the process online and need to send in my paperwork so they can review.  From what I've read, they DO NOT rely on doctor's orders but rather, ability to do the same or similar previous job.  I'm the last person to take/accept a handout but for SS, I look at it as a "bank account" that I've been paying into for the past 30 some odd years...I'd like to get some sort of financial relief since there is no way I see myself doing the same work I've been doing for that time.  Tips?  Suggestions?  

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!

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!

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About andrew76092

Patient, Survivor
Brain Cancer
Acupuncture, After Treatment, Alternative Treatments, Biotherapy, Cancer Diagnosis, Cancer Nutrition, Cancer Prevention, Cancer Treatments, Chemotherapy, Clinical Trials and Research, Conventional Treatments, Diet, Emotional Support, Insurance, Lifestyle, Local Hyperthermia, Physical Therapy, Prevention Tips, Radiation, Recipes, Side Effects, Spiritual Support, Supplements

I’m a 44 year old father of two boys (15 and 20), married to my best friend for 20 years! I live in Southlake, TX and have been a sales executive/leader for most of my career, mainly in the hotel industry.
On May, 25, 2017, I was diagnosed with glioblastoma (GBM 4) and had it resected a few days after. On June 27, I’ll begin my first course of radiation/chemo treatment. Two promising clinical trials were not possible due to my blood type and tumor characteristics.
I have an amazing support network which include my wife, two boys, mom & dad, mother/father in laws, my identical twin brother, older sister and their families. An amazing group of close and distant friends keep me going, day after day.
In full disclosure to this GBM, you are no match for me, I’m going to crush you!
While politics may not be important to some, I’m proud to share that MY president took office in January, 2017; always have been, always will be a tried and true supporter of Donald J. Trump! #MAGA!

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