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GBM IV - how's the battle going?

Posts: 102
Joined: Sep 2009

Just trying to touch base with anyone else battling or caring for someone who is battling GBM IV and who is in their first or second year since diagnosis. Wondering how everyone is going and what's working and what's not. My husband was diagnosed in Feb 09, had his op in Mar 09 and had a recurrence in July 09. We now have 8 week scans to monitor the recurrence. He is on Temodar 5/23. He is also on Dilantin and Tegretol for seizures. He was well enough to go back to work in Sept and is currently doing 3 days a week. This week however he is beginning to doubt his ability to perform his job and seems to believe his employer may give him a redundancy. He was put on dexamethsone 3 weeks ago and has been having chest pains and seems a little depressed. He has finally agreed to more regular checks by the GP (he also has diabetes and heart issues). Life almost seems normal between scans. Next one in next Friday.
How is everyone else going?

Posts: 358
Joined: Aug 2009

My husband was diagnosed in March '09 with an inoperable GBM IV. He went the standard radiation and chemo, inital MRI was positive, the following MRI was not. He was put on avastin and just met with the oncologist following a 4 treatment cycle. The results were very positive. The tumor had decreased in size by approx. 50%. This is not a permanent fix but a time-buyer. He is also on dexamethasone but side effects have been minimal. We are embracing the good times while we have them.

Posts: 102
Joined: Sep 2009

As I have said in another post that's great news. Just out of curiosity how long is a treatment cycle for Avastin? We are now doing scans every 8-10 weeks and as hubby's next scan is next Friday, we are all getting a little nervous. For the first time since diagnosis he is getting pessimistic. I am not sure if its the meds making him depressed. Even though he had an op to remove his tumour, we have been told that chemo will only buy him time. We too are making the most of the time we have together and with the girls.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

Jo is doing GREAT.
I realize that is the way these things go.
She is currently in the 4th week of chemo (temodar) and radiation.
At MD Anderson, she had her entire left frontal lobe removed.
That is where the tumor was.
It had absolutely no effect upon her personality, speech or motor skills, so I am keeping my fingers crossed.
Her left eye is swollen a little and it waters alot and her forehead looks like she has a sunburn along with the incison.
Her hair is just starting to fall out though..so, give it time I guess.
Aside from the area in front of the huge incision, she still has her beautiful long hair hanging down to her shoulders.
I take her to a gym, 3 days a week where she has gone from not being able to bench press the first plate at all to benching it 16 times as she did just an hour ago.
We have walked for up to 2 hours and 25 minutes, but normally it is for about 45 minutes daily.
She can still drive, but work is a contentious arguement with my family.
I wanted her to go back just to get some normalcy back into her life...my family thinks I am a cad.
Believe it or not the guy that sits in front of me at work had Glioma cat 3,(10 year survivor and doing great!) and he told me the two major things was his workout and his diet and coming to work every day, even back when he was doing chemo and radiation that got him through it.
I am honest with my wife however and told her that if I were in the same position I would never work again.
I'd just go to every college cross country and track meet in the country and watch..
That is what we were going to do when we retired in a year and a half.
Funny, how life has a change of plans.
I am going to add some thoughts on the "emotional" thread because it nearly KILLED me..my sister had to grab me by the shirt back in August and say "Get a grip! start being the caregiver here and I have tried my best to buck up.
We go back to MD Anderson on January 5th where Jo may be involved with a trial including "celebrex, accutane and thilodomide"
She is mad because she can't go to the NCAA XC Nationals with me on Monday...
That's the day my sister takes her up for radiation.
We have to share rides because her teatment place is exactly 70 miles from our door step.
I'm going to the nationals with a friend of mine who lost a daughter to endocrine cancer and he really helps me out emotionally...

Posts: 358
Joined: Aug 2009

I am sorry I have not responded to your question re: Avastin. I found I needed a break from the discussion board after awhile and did not see your question until today. My husband receives Avastin every other week for 4 treatments (8 weeks). We then have an MRI and meet with the Oncologist. His results have been very good so far. The plan is to wean down to Avastin every three weeks and eventually to every 4 weeks. How is your husband doing?

Posts: 36
Joined: Sep 2009

I too have GBM4. I was diagnosed on 12/15/08 and had surgery on 1/13/09. I was told in December that the tumor was inoperable, I was sent to Ann Abor for 2nd opinion they too said it was inoperable. The first part of January I became very ill from the increasing size,it went from 2.5 cm to 7.5cm in a month.I had surgery on 1/13/09, (not much choice) They debulked the tumor and got what they could see. I then had 6 weeks of radiation and have been on Temadar ever since. I currently take 250 mg for 5 days and then off for 3 weeks. I have not been able to work since being off in December. About 2-3 weeks ago my doctor put me on permanent disiblity so I am not able to return to work. I always doubted if I could or not anyway. I get tired very easy and tend to get very sick if I overdo it working. I have also had problems with my memory.I have never had a clean MRI after surgery, I just had my last MRI on 11/17 amnd still waiting for those results. I should have the results on 11/23/09 I have always been in good health and pretty much able to do what I want, meaning driving and every day task, house work , mowing, small auto repairs and visiting friends.
I hope everything goes well for you and your husband in the future as well.
Take care and God bless you

Posts: 24
Joined: Jul 2009

My husband had his first craniotomy May 09. His entire left front lobal was removed. He then went through radiation and temodar. After our three week break, we started terceva and avastin. After 2 1/2 months he had a reoccurance, two nodules and thickening of the dura. One nodule was putting pressure on his eye so immediate surgery was needed to make sure the eye was saved. Our surgeon was able to remove everything but he also had to remove his eyebrow bone, scrape the cells off of it and then reconstruct it. Surgery was Monday. We are home now. His head is extremely swollen as well as his eye. The incision is much larger and his head was shaved from the forehead to the top of his head and from ear to ear. Today I noticed his speech is slurring and he keeps repeating himself. (almost as if he were drunk). This just started. He was fine the last 4 days. I hope it is temporary but a call to the surgeon is in the works. With the exception to this past week, you would never know he has brain cancer. He wears a baseball hat, but he did prior to his diagnosis as well. He lost his hair only near his incision. The hat covers the area. He has been able to funtion normally. I just hope his recovery this time around is the same. He is on ritalin to combat the fatigue. Now I am looking for the next treatment for him to start in two weeks (the time the surgeon will clear him for treatments). If anyone has a suggestion please pass it on. I have read so many clinicals they are all starting to seem alike.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

My wife had what she thought was a seizure which caused her to wreck her car when she was in her late teens or early 20's.
They put her on tegretol andshe NEVER had a another seizure AND never quit taking the drug for the past 30 years before her diagnosis.
She still religiously takes that tegretol and i just hate it because I am sure that is what caused the problems in the first place.
I would think that tests should be performed to analyze whether or not there is a need for medication such as this after so many years.
She did have yearly blood work done, but no doctor had ever said

"Ok, I think 20-30 years into this now, it's safe o say that you can come off this medication"

I wonder how many GBM victims have been long term anti-seizure medication patients and I wonder if there ever was a study done or is underway linking anti-seizure medications to brain tumors.

We go back to MD Anderson on January 5th and I cannot wait. Those folks "extended "my wifes life and I am very grateful.

Posts: 3
Joined: Dec 2009

my mother has GBM IV and she had surgery to remove the bulk of one of the tumors, there are still 2 small ones there. she is taking dexamethasone (steriod) for swelling, anitseizure med. had her first chemo treatment last monday avastin and CPT11, and temadar. she sleeps alot and is losing her motor functions on her left side like she was before she had the surgery. that got better after the surgery now it is getting bad again. The temedar is making her leg muscles weak and she can barely walk. I sure hope this gets better? anyone know?

NCAA XC's picture
Posts: 25
Joined: Nov 2009

After 5 months Jo Ellen 1..GBM IV 0
MRI taken at Mays Clinic at the MD Anderson ancer Center on January 5th showed no cancer or tumor activity.
Spaces in the brain which were swollen and closed according to Dr. Puduvalli aare opening back up clear and free of any of the bad guys.
Jo Ellen still walking on the treadmill for an hour every other day, lifting weights and reading books again.
Had to stop working...but she has a full time job now as far as her husband is concerned...
Setting up an art studio in her basement, going to the gym 3 times a week, drinking her pommegranite juice and working up to "running" one mile on the track a few times a week..
Month number 5 in the books..a victory in the war ...woman vs. GBM4!

Posts: 4
Joined: Jan 2010

I am 44 years old, over-all good health. I’m Retired US Army, with 23 years. I was recently diagnosed with glioblastoma multiforme 4, on December 16, 2009. I have a great, and positive attitude and not afraid to fight. I only have 1 opinion so far. I’m seeking more. I’ve already fired my first Oncologist, because after 2 visits he already wrote me off. I have a new one now, who’s Ex-Army, and offers hope.

The more I understand about my illness, the less afraid I feel. Though, I am terrified of the unknown. I look at this, as preparing for battle.
In my military career, I’ve always challenged the odds. My resection was a 3cm mass. I believe I caught it early, because I was listening to my body. My will is strong, with a wife (17 Years) and 2 young children. I will fight to my last breath. Except for some Writing Graphia, I am still an expert on the internet. I have no other side effects, Meds combined.
My Resection was 12/2/2009. I'm feeling stronger everyday,
but I'm being told, I'm pushing my self too hard. I would like some advice on how to fight this. I've never quit anything in my life, and don't believe in CAN'T.

Is there a support group in El Paso, Texas for Brain Cancer? All I see is Breast Cancer.

Robert F. Lefferts

vickie whitener
Posts: 6
Joined: Nov 2009

Hello Robert, we are in our 11 month of the fight. And believe me, it is a fight. You may want to look at brainhospice.com. I found this sight and the information and the stories are all related to our struggle. CAN'T isn't in our vocabulary either! We are fighting with everything we have. God bless

Posts: 358
Joined: Aug 2009

Have not been on the discussion boards for awhile. My husband who was diagnosed in March 09 is doing very well. We are on our third round of Avastin treatments. He receives Avastin every other week for 4 treatments. The first round showed a 50% reduction in the tumor, the 2nd roun should a slight decrease in the tumor. The side effects are very minimal. He is doing well, keeps busy on the computer, reading, everyday chores around the house. We remain optimistic and thankful for every good day he has.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

Examination: MRI of the Brain with and without Contrast enhancement, 01/05/2010

Clinical History: A 50-year-old patient, status post resection of left frontal glioblastoma.

Comparison: 09/2009

Findings: Routine pre- and postcontrast multiplanar multiecho brain MRI scan was obtained.

Previously seen extra-axial fluid collection at the surgical site has significantly decreased in size. The resection cavity appears slightly smaller. The previously seen mass effect upon the midline structures and especially around the floor of the left frontal horn has resolved. The ventricle size is normal with minimal ex vacuo dilatation of left frontal horn. There is no midline shift or brain herniation. Following contrast injection, no abnormal nodular enhancement is present to suggest disease progression. Linear contrast enhancement in the posterior aspect of the resection cavity most likely represents postsurgical change, however, should be closely monitored. Thick dural enhancement appears linear without nodularity. Persistent FLAIR hyperintensity is present in the posterior aspect of the resection cavity; however, it has significantly decreased when compared to previous postsurgical study.

There are no areas of restricted diffusion.

Improved postsurgical changes without evidence for residual/recurrent tumor. To be closely monitored.

Posts: 102
Joined: Sep 2009

Its great news that Avastin is working.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

Doggone it, Jo's WBC was low. We had the lab done at a hospital in Indinapolis and after the blood test, they faxed the results to the researcher down at MD Anderson.
We were in a Dairy Queen in Indy, when I got a call from the researcher in Houston telling us that the result was too low and to schedule another test a few hours before chemo was to start again.
The folks at INDY gladly did that for us and I had my wife resting for a few days and eating the heck out of yogurt, lagumes, spinach, fish oil pills and rest.
Two days later, her WBC jumped up to 2.6 and the researcher gave her a go to continue the trial.
I took her to the gym tonight..She walked on a treadmill for 30 minutes, did 4 sets of bench press, curls, back curls, leg curls......
Of course she is only 5 months into her GBM 4..lets keep it going ole gal, she's the only buddy I got.
We were going to retire in a year and a half and hit every college cross country and track meet from Division 1 to NAIA!

NCAA XC's picture
Posts: 25
Joined: Nov 2009

Jo's hair began to grow back last night..At least that is first time I have noticed anything.
Patches of small brown hairs coming right up..almost overnight.
The 250mg Temodar dosen't seem to interrupt the process.
Month number 6 and all seems well..
Lab work continues this week..back to MD Anderson The first week of March.
She drove to the gym by herself today and lifted weights.
I'd like to think I can finally breathe easy now..but I know better.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

Jo's MRI's were clear!
Shes in the temodar only arm of the trial and they had to reduce her dosage from 250mg to 205mg because her white cell blood count stayed too low.
Already, her schedule at MD Anderson for follow up number 4 is posted on mymdanderson.
The MRI 7 weeks from now will be at 10p.m...gotta psyche up for that one..Waterfall cafe is closed and so is coolbeans.
Hope things stay the same...it is the 7th month of GBM4 after two craniotomies and chemo/radiation..so far...so good.
We walked an hour yesterday around the motel!

Posts: 4
Joined: Mar 2010

First a brief story - I was diagnosed with GBM IV, out-of-the-blue last Oct. '09. I had no headaches, or other "classic" symptoms, although I had severely compromised left peripheral vision, and a weird "detachment" feeling from my left side on a couple of occasions, which is why I was out of town at the hospital, scheduled by my primary physician, with a specialist in an attempt to figure out what was happening with me.
Otherwise, and before I got any word from the specialists, I was riding high and was in the midst of a major, new step in my life - career-wise and love life-wise. This included relocating to the land of my dreams. I was in final discussions to making this all happen, and in fact, I received a phone call from a key player to set up an impromptu meeting that night, a few hours after i received my preliminary diagnoses. I had to, sadly (rather, let's say 'devastatingly'), let the person know that I would be unavailable due to a sudden, unexpected medical condition. To cut to the chase, about four days later, I ended up nearly 3,000 miles away in the hands of a most knowledgeable and capable medical team at a west coast university medical center. The plan: surgery to remove the tumor that was found on the MRI days earlier. The med team was encouraged they got it all, but, after the post-op MRI, it turns out 'nope' - well 'most', but not all. A biopsy was done and the next day was when I had one of the strangest and most mind-boggling conversations I ever had with a doctor - or team of doctors and nurses - or anyone for that matter. Frankly, out of all the words flying around the room, the only ones I really heard at the time was something about me, likely, dying in the next 6 to 12 months due to this tumor, or remnants thereof. Until you've sat there and heard it personally directed at you, you don't know what you're missing. And I hope you never have to hear it, 'cause it ain't fun. I mean, what they had to say could have been worse, but it was no party hearing my 'snap' prognosis either. My daughter fell apart crying, but my mind kicked in to the next gear and shot out "OK, so what's the best case scenario here?" The radiation Doc got a half grin on his face and said "Well, best case is, you go through our treatments and you're back here in five years and we're talking about your recovery". I said "OK, we're going with that then. So what do we have to do to get there"? That's when the radiation therapy, Chemo Therapy (from the oncologist), and other plans were laid out. They also mentioned clinical trials, and this and that. They "sold" their treatments on me, and even offered to send me elsewhere for second opinions, etc. I'll just say this for now. I am up for my 6 month MRI follow up next week. My first follow up, last February must have been REALLY good, 'cause I NEVER saw my somewhat stone-faced Neuro/Oncology team SMILE from ear to ear like they were while they were looking at my new MRI on the screen. I mean it was almost like Christmas morning...they were all smiles and saying to each other "look at that" "Wow, look, etc. etc".
I am happy, of course,but cautious just the same. And my conversations with my small-town primary physician back home here are grounded in 'reality' (what a concept) and kept light-hearted, but with positive outcome as a foundation.

OK, now more about HOW I'm doing. And I'll speak for myself...I don't know how my fellow GBM guys and gals are experiencing things. We've heard about those "good days and bad days". Well, now I know what they mean. And unless and until you are suffering from one these horrible afflictions you won't really have a full understanding of those good and bad ones. For me, radiation therapy was OK. It took over an hour to drive to the med clinic, for a 2 minute procedure, but as I said "so long as this is working, it's all worth it". I lost all the hair on the right side of my head - where the radiation was focused - and the scalp got kind of sensitive. However, the neuro/radiation Doc was very pleased with how I responded to radiation, and from the follow up MRI, it looks like it did very well. Now the Chemo-Therapy. What can I say about that? Well, I just hope to you-know-where it's working, because it is a very unpleasant experience, and the potential future side effects make it even more distasteful. However, when I take my doses - I'm on the 5/23 program now - I think positive, positive, positive. Reality!? The mental stress of knowing the time is getting near to actually start your dosage again is enough to get me feeling sick.
My appetite and diet? Erratic. Sometimes - actually most of the time - I have a voracious appetite, but no desire to eat. So my primary Doc and I are working on different medications to help with appetite, nausea, etc.
Well, the box here ate some of my blurb, so I guess I could take that as a sign to close up here for now.
So now that I have my "storytime/catharsis" out there, maybe now I can answer some of the questions and concerns YOU have.
Aloha All, and see you next time.
Good Luck, keep an open mind, and envision a positive outcome!

danielgharper's picture
Posts: 13
Joined: Apr 2010

I was diagnosed with a glioblastoma in 2007. I had surgery, did the standard 6 weeks of radiation and temodar, then did 6 more months of chemo through Duke University in N.C. I was cancer free and symptom free for 2.5 years, until January, 2010. Since then, I've had 6 seizures, 2 MRIs, 1 P.E.T. scan, 5 visits with oncologists, a radiologist, a neurologist, and a neuro-oncologist in Las Vegas, Salt Lake City, and at UCSF in San Fran. All of these doctors who all gave me different suggestions and treatment plans. I listened to none of them except my neuro-oncologist, who kindly gave me 1.25 hours of his time to show me on the MRIs why it was obvious my cancer had returned. My neurologist said it hadn't returned, and my primary oncologist hasn't called me since I got an MRI he ordered or since surgery. Its now been over 1 month, and I haven't heard from him!

I have no reason to call him as I don't respect his opinion. After seeing my first MRI in January, he said he thought there was a 60% chance that the small growth appearing on the scan was cancer cells come back to haunt me. He said that I shouldn't consider surgery anytime soon, and he prescribed me Temodar. This could possibly be due to the fact (found in a book by Dr. Allen Spreen, an Medical Doctor and Health Sciences Institute researcher) that an two-thirds of an oncologists income comes from prescribing chemotherapy.

I am by no means a crazy natural therapy-inclined person with a vendetta against modern medicine and doctors. I simply recognize the dramatic need America has for reform in cancer treatment and the way pharmaceutical companies control the FDA. For example, members on the board of an FDA approval committee for a certain drug are allowed to receive up to $50,000 from the company soliciting their approval, and still serve on the board. This information is available to the general public, but I found it in the New England Journal of Medicine, amongst other places.

If you would like to read more into what I believe is the best way to treat cancer, my personal story, and alternative therapies that have great statistics, please read my research paper. I was frustrated with the lack of solid research and statistical evidence regarding cancer. Once you've read the paper, feel free to contact me if you want more info on my treatment plan or naturopathic doctor. There are also two books I mention in the paper I highly recommend you read. You can access the paper at http://precisionpoints.wordpress.com. Just scroll down through the recent posts until you find the research paper and you can download it as a word document.

God bless, danielgharper@yahoo.com

PS obviously my research and beliefs will become more believable when I'm a few more years out, so you can keep up with my story on my blog, if you so desire.

NCAA XC's picture
Posts: 25
Joined: Nov 2009

No change in the MRI scan from march.
The docs are worried about a flair or enhancement in an area just below the part of the brain that they took out.
MD Anderson has this hotel (I would imagine most of them do) called the Rotary House that we stayed in for 4 days....WONDERFUL folks.
And obviously close to where all the action is....cancer action that is.
Jo closed the MRI place down on Wednesday night!
Didn't get out of there until 12:15a.m.!
I walked around the twisting and turning corridors of the hospital, wearing my ipod and listening to The Doors "The End" just before midnight..
Eerie and symbolic..gave it that really existential feel..
Roaming the halls from the gazebo back to the MRI room, listening to The End.
Those darkened twisting hallways symbolic of the battle I think..who knows where the next turn will take you.
Of course the Doors were back in my day..I don't think anybody listens to them anymore.ha
I wouldn't either, but this caregiver stuff and the long waits in waiting rooms, there are only so many People magazines you can look at and stay sane.
I hate planes and hospitals and fate has decreed the remainder of a lifetime of these.....
I'll need to put alot more songs on the ipod here soon!

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