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Glioblastoma Grade IV - Right Temporal Lobe - 64 year old Male - March 22nd, 2012

GinaOwensby's picture
GinaOwensby
Posts: 6
Joined: May 2012

I am the caregiver to the love of my life.

And looking for other caregivers or people with GBM IV - right temporal lobe diagnosis that has information and first hand knowledge of this journey.

We have been through:

Phase One March 26th, 2012: surgery
Phase Two (May through June 2012): 6 weeks of radiation (TrueBeam) & chemo (Temodar)
Phase Three until May 2013: Currently on maintenance doses of Temodar 5 days on and 23 days off

mighty6
Posts: 47
Joined: Sep 2011

Gina,

My husband was dx with GBM 14 months ago. The tumor was at the same area: right temporal lobe. He has been through almost the same treatments, except we've put him under daily Temodar plus Celebrax in maintenance phase. So far so good, he has been totally disease-free on all MRIs.

Not sure what you want to know exactly. but a few things that we did and might be worth considering:
1. a thorough gene test for the status of MGMT, PTEN, EGFR. etc. We have used Caris Life Science for this. but I'm sure there are lot of others out there. based on the available brain tumor studies, this test also gives a list all the agents "associated with clinical benefit" and the ones "lack of clinical benefit". This is by no means golden standard, but I consider it a good starting point to explore your options.
If un-methylated MGMT, you might consider switching to non-standard Temodar schedule.
PTEN & EGFR are associated with effectiveness of other treatments (Tarceva, CDX-110, etc.)

2. Avoid 3S': sleep deprivation (takes Melotoni daily), sickness (per our NO, we used anti-biotic every other day for infection prevention), stress (whatever provides you inner peace...).

3. healthy life style (exercise, good food, lots of love) is never too late

4. There are quite a few immuno-therapies and gene therapies are in good shape, but most of them require the patience being newly diagnosed. Your loved one,like most of us, are not qualified anymore. I hope you never need it, but if there is recurrence, look for:
. CDX-110 for recurrence
. Tocagen for recurrence
. DCvax for recurrence
. ICT-121 for recurrence -- should be there soon

Keep up the good fight.All the best!
-- Jane

GinaOwensby's picture
GinaOwensby
Posts: 6
Joined: May 2012

Jane,

If you don't mind me asking what city and state are you located in? We are in Brunswick, GA but our treatments are in Savannah.

I suppose that what I am looking for is anything that can help Randy. Looking to see what side effects others have had from surgery or medication. Looking for success stories from people that are still around after the 18 to 24 month time-frame that is generally given and wanting to talk to those that are in the group that have beat those crappy odds.

We had an excellent surgeon and was able to remove the complete tumor and for the most part Randy does not seem like he was impaired neurologically. He was always really good with numbers being able to remember his golf score as well as everyone else's scores that played with him. He struggles with that now. The only other thing that I have observed was sometimes when he stands up he goes into slow motion with his feet and arms barely moving when he walks forward and he is very likely to falling when this happens. The whole episode lasts for maybe 30 seconds or so.

Has your husband had any thing like this happen to him?

So far sleep is concerned that is not a problem because he sleeps a lot. He has been very healthy except for another condition that he has called achalasia which is a problem swallowing. And his stress level is very low... fortunately he is retired and we have great medical insurance.

What is the purpose of a gene test and how is it used?

Does your husband take a lower does of temodar if he takes it on a daily basis? It is our impression that Randy will come off the temodar May 2013 and would not have to take it again, well unless there was new growth shown on an MRI and if that was the case the next drug of choice would be Avastin.

Thanks for reaching out to me I really do appreciate you taking the time.

Putting one foot in front of the other with my head up for right now.

Wishing you and your husband a bright future.

Gina

mighty6
Posts: 47
Joined: Sep 2011

Dear Gina,

We are treated in Dallas, Texas.

As far as I can recall, Gary did not have symptom you described. He was physically weak for a few weeks though. Not bed-ridden, but move slow. maybe that's what Randy is going through.? The only problems Gary had from all the treatments are:
. hair loss during radiation, but they came back soon after it is done
. relatively low blood cells count, which is expected (unfortunately), especially considering he is on daily Temodar (low dosage, the same dosage as the one you took during radiation therapy).
. fatigue. This is from the low blood cells count. He took 1-2 hours nap per day when he is tired.
. His eyesight is worsen some, but this could be from aging too

Gene test on the tumor tissue is to help identify which treatment plan is better suited for each patient because every drug/treatment has its own target. e.g. MGMT methylation is associated with lot better Temodar response. I strongly believe that the individualized treatment plan gives better chance.

It is great that Randy had total gross resection. This is a big plus. And his good KPS before and after surgery. Both are strong indicators of the better prognoses. Wish you and Randy too a bright future!

--Jane

GinaOwensby's picture
GinaOwensby
Posts: 6
Joined: May 2012

Jane,

I visit there often since my daughter, son-in-law and granddaughter live right outside of Dallas. It is a great place and I imagine has good treatment opportunities.

Randy has had the same: hair loss all of his blood work after every check-up has been within normal range. So we have been blessed in that respect. I am not sure what KPS stands for but we were very pleased that they were able to remove the tumor. The five days on Temodar makes him ill about the 4th day and hangs on for about a week. Then we have smooth sailing until the next round starts.

He is still waiting for his hair to start growing back around the surgery site... The other bald spots have started filling in... he has little patience!

Now that we have been through the radiation, chemo had his first post MRI (which was good) and started the maintenance dose the worse part is every time he has a headache I start to worry... the only two major signs that anything was wrong was the loss of his peripheral vision in the left eye (which he has back) and the progressively worse headaches.

After being on this site and reading all of the symptoms I feel so fortunate that his were minor compared to what it could have been... and I think the location of his GBM was better than most. I am just heart sick for every one of us that have to face this terrible journey.

Hoping that Gary and you are doing well on this Saturday evening.

Gina

Spiely
Posts: 2
Joined: Sep 2012

I too have just found myself to be the caretaker to the love of my life!!

Four weeks ago my strong, handsome, healthy husband had two seizures clear out of the blue. Now, 3 weeks, 2 states, 3 hospitals and 1 CAT scan and 4 MRI's later, he was diagnosed with Stage VI Glioblastoma brain cancer.

They found 2 tumors, the second one being called a satallite tumor. They cannot operate. They recommend very aggresive chemo and radiation treatments which would more than likely leave him deaf and blind due to the location of the tumors. So, he's opted not to do the traditional treatments.

He did a lot of online research and has studied how tumors thrive on sugar. He checks into a clinic tomorrow where they teach you how to eat and cook an all plant based diet. This theory is, if you starve the tumors of sugar they will die.

Has anyone else heard about this or tried this treatment??

Seems like we all share very similar situations with very different journeys. Here's to my heart felf hope of a miracle with this diet. I so wish he would try the traditional treatments but this is his journey, not mine. I will love and support whatever he wishes to do.

GinaOwensby's picture
GinaOwensby
Posts: 6
Joined: May 2012

I am so sorry to hear your story. We never knew about this insidious disease until March and now being on this site and undergoing treatment we have so learned that even though "they" say this is a rare tumor it really doesn't appear to be... It seems to be everywhere!!!

Why did it take so long for the to figure out his tumors? Randy had one CT Scan that showed the "large mass" and then the MRI showed it in more detail and of course the surgery confirmed it.

I have never heard about the alternative treatment you are speaking about nor about sugar feeding tumors. I pray that this course of action your husband seeks will provide him with a successful outcome. And you are right we cannot choose how they walk down this path only that we walk down it with them; holding and loving them as we go...

I suppose the hardest part about this whole thing is that we all know we are going to die someday... but we have no idea how soon or far away. This diagnosis brings the inevitable closer to our doorstep and that makes me feel scared and sick.

Sending you prayers for a good outcome. Sending you hope for abundance of good memories and happy times together.

Gina

Jaxees
Posts: 14
Joined: Sep 2012

I have heard of this, it's actually based also on a regular detox program. 10 days of water fasting to starve the tumors. This is so hard for most people to do. Years ago, I researched this for myself, I was told I had breast cancer, and then a few years later thyroid cancer. I did a 10 day water fast both times and both times no tumor was subsequently found. Also, though, I incorporated a lemon cleanse. * after the 10 water cleanse, pure organic home squeezed lemon juice, pure maple syrup, as little to taste, pure green organic tea and purified water. Yes, I did this prior to it being "FAMOUS".

I am here now on this site because, my mother was dxd last year with lung cancer, she was told she was cancer free only to find out 4 months later ( so 3 weeks ago)that it was in her brain, 12 tumors. Still being called lung cancer. Then, last Friday, my FIL, a healthy man, jogger, works out... went the hospital with loss of function on his left side. Today, he was told IV GBM. :( Neither he or my mother would be the types to actually try to starve a tumor. Both are only 71.
I have known a few people over the years that swear by it, fasting and healing oneself.
Steps- get rid of all processed foods, all corn syrups, all sugars, if it comes in a box, can, bag, do not ingest it. Pick whole organic foods and invest in a good juicer.

Because of this in my face illness stage with my family, I have ordered a new juicer and will start a cleanse myself this Wednesday. I like the Omega brand juicer, I made sure it can juice wheat grass and I sprout my own sprouts etc...
As care givers I recommend a cleanse for all of you. After the second day, you can actually feel a difference. The 3rd day, brushing your teeth seems SOOOO important, ha, it's gross, the 4th day pretty big energy boosts and the 5th, 6th, 7th the same... 8th-10th you realize how light you can feel internally. Back in the 90s with the breast cancer scare, I also did organic coffee enemas. I haven't done that since, but if you feel someones diet has been truly just crap, I would suggest reading up on it and giving it a try.

More later. My H just walked in, he has to go help arrange his parents house for his father to die. The Dr told him not to seek any treatment at all. :( AND WTF? Seriously, gave the family no hope what so ever. :(

Anyhow, I am going to read as much as I can for my husbands family. I know my mom won't change and she has decided to die, she is eating bacon right now for dinner. :( Animal fats will especially grow cancer cells...
If anyone else has whole food cures stories I would also love to read them.

My thoughts are with you all. I hope to post more

Scottgri
Posts: 44
Joined: Mar 2012

I was diagnosed in April of 2011, tumor was immediately removed and I then started radiation, temodar and Avastin. I just completed a clinical trial and am now on 1 more year of Avastin....then we stop it all! Because, if after 2 years there are no new Tumors I can officially claim "remission", but I will call it WON!

My docs wanted to stop the temodar after a year of it because he has had patients get leukemia from it, which is curable but hard to get on a donor list when your fighting a GBM.

I've been back to work for almost a year now and living a completely normal life....

Duke University is where I found hope, there wasn't a lot of that going on around here in Western NY when I was diagnosed.

I drove race cars for a long time, been skiing huge steep mountains my whole life and have never been more scared than when I started finding out how nasty GBMs are. I took a fighters stance and never looked back from my "I'm going to win" attitude. Despite all of that, I had the sleepless nights and waking my wife up to reassure me, and she the same for me. This has been a really hard18 months, that I'm starting to put in my rear view mirror.

Find docs you can trust, seek treatment plans that match your goals and KICK SOME butt!

GinaOwensby's picture
GinaOwensby
Posts: 6
Joined: May 2012

I look forward to watching you kick some GBM butt. Attitude is so important not only in this but every aspect of life. Glad to hear that you are tumor free since your surgery. So you are 17 months into this journey. If you don't mind me asking a few questions... What were your initial symptoms that lead to the diagnosis? What is your Avastin schedule? Do you have any side effects from Avastin? is the Avastin a part of the clinical trial?

We have had our 1st follow up MRI with a good report. No new tumor(s). Randy is now on his 2 round of Temodar.

I understand the fear... Night time is the worst because the shadows distort everything... Even the familiar things in my life. Randy is a fighter but he also has a faith that if it is his time - then - it is his time. We are living our lives in smaller increments such as from MRI to MRI. Have put some of our long range plans on hold and living each day to the fullest. We have always been able to talk about anything and everything, that has not changed. This GBM happened inside of his head but it feels like it is inside of mine as well.

Will keep you and your wife in my thoughts and prayers.

Gina

michral
Posts: 14
Joined: Jan 2003

Hi everyone,

My best friend, love of my life was diagnosed with GBM on 03/10/2012. It is located in the right temporal lobe. He was fine, healthy, etc. He left for work on Monday and at about noon, I had the police at my door that my husband had been rushed to the hospital. My oldest son was home and we rushed to the ER. We got there and found that he was found down in his work car and without an airway. A coworker, who was not suppose to be anywhere near him, found him, admininstered CPR and brought him back. He was rushed by ambulance to our local hospital. When we arrived, he seemed fine, but about 1/2 hour later he had a grand mal seizure that lasted about 15 minutes. We live in a small community and after a few days, we had MRI results of 3 lesions, 1 large and 2 satelites - inopearable, too close to ventricle, worry of spread. I decided to go to Boston, Brigham and Women's Hospital for a biopsy. The biopsy took place on 03/5/2012 and the result was GBM. We have undergone 6 weeks of radiation and tonight we start our fourth round of chemo, temodar.

My husband has had a lot of side effects, fatigue, loss of balance, confusion, but he seems to clear between cycles. I have asked for a referral for a second opinion in treatment at Dana-Farber in Boston and hope to get the appointment information this week.

Staying strong and having others to talk to I find really helps. I will keep everyone posted.

Honestly, for the most part, I stay positive, we have 3 children (a son 16, a son 13, and a daughter 11) and I have to be the anchor for the family and don't want to bring my husband down, but mentally it has really taken a toll. I've lost 30+ pounds and spend a lot of time hiding and crying. I feel like this is a nightmare, but we are expecting a miracle and fighting a hard fight - we can beat this horrendous disease.

Thoughts and prayers to everyone.
Michelle

GinaOwensby's picture
GinaOwensby
Posts: 6
Joined: May 2012

My Dear Michelle,

I am saddened by your story because I just can't imagine what it is like for you - knowing you must be young and have 3 young children in your family. Our children are grown with children of their own.

It is hard enough learning about GBMs, navigating through the health care system then adding on caring for your husband and children... so no doubt there is probably not much time left for you. But it is so important to find time to take care of yourself. I hope you have a network of family and friends that can step in and help you.

You are right it is a nightmare and unfortunately it is not one that we can wake up from... it follows us night and day. It seems like you and I started on this roller coaster ride about the same time yours 3/10/12 and mine 3/22/12. Please keep us posted to how our husband and you are doing. I think hearing of victories no matter how small they may be is so important for all of us... some how it gives us hope and strength.

You, your husband and your children are in my thoughts and prayers.

Gina

michral
Posts: 14
Joined: Jan 2003

Having this forum really helps to connect with others going through the same thing. I look forward to sharing our journies.

My husband is 52 and I am 49. We've been together 29 years this November (19 years married).

I'm hoping that his next MRI shows shrinkage. I will say between the radiation and chemo, his personality is somewhat different and I hope and pray it's just the strong medications he is on. Anti-seizure medications, pain killers, steroids, and chemo.

I will keep everyone posted and look forward to forming support relationships on this site.

Have a great day and thoughts and prayers to all of those suffering.
Michelle

Scottgri
Posts: 44
Joined: Mar 2012

My symptoms were mostly headaches. Severe pain that lasted 20-30 seconds then went away. My initial Avastin schedule was every other week for 12 months, now it's every 3weeks or another year. After that, nothing. They tell me if it hasn't come back in 2 years I win!!! No side affects I can feel, but my blood pressure was high so now I'm on drugs for that, and my urine protein dip came back +1 twice (indication the kidneys might be being affected) not high enough to stop treatment.
It was a component of the trial, but I completed it and it is now part of my normal treatment plan.

Hang in there!!!
Scott

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