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GBM IV, Left Frontal Lobe- many questions

Heather Q
Posts: 3
Joined: Mar 2010

I am beyond grateful to find this website. My mother, 67, was diagnosed w/ a GBM in October, 09 and my family has been going through this alone w/ a ton of questions. We noticed some thing was not right w/ her b/c she could not retrieve her words, names and communication became increasingly difficult. On 10/26/09 she had surgery and the surgeon was able to do a complete resection (3cm tumor) and he did use the G-Wafers. Later I learned that having the wafers would exclude her from many clinical trials, and I still wonder if the surgeon should have asked us prior to using them, however, it is comforting to know they started to combat the cancer immediately. She's already completed her 6 wks of radiation w/ the Temodar 125 mg. She also took steroids during her 6 wks of radiation to combat brain swelling, then she was taken off for a few weeks. She had an MRI in 2/10/10 and there was no re-growth nor evidence of cancer. She has done one month of Temodar 250 mg and will start her next cycle in a week. She did vomit for hours the first 3 days but we finally figured out you weren't suppose to take it w/ food. She was exhausted and could not stay awake but they put her back on the steroid, the generic, dexamethosone (sp) and it was like she was raised from the dead. She's still tired, but only takes an occasional cat nap and its brought her appetite back. However, I can tell something is off b/c she's having a hard time retrieving her words again and although, she's so much like herself, she struggles w/ multiple step tasks, so we worry, is its growing back. Oh yea, she did have major problems w/ her left eye, which was finally dx'ed as a 'dry eye' by the eye doctor and was easily taken care of w/ drops,however, she suffered w/ blurred vision for weeks b/c neither the surgeon or oncologist could figure out the problem.
QUESTIONS:
How long can we expect break through brain swelling?
Does anyone else notice short term memory problems or confusion while taking the Temodar?
What's the best time to take Temodar? Morning or evening? how long do you wait to eat prior or following a dose?
Does your hair grow back?
How often do you have MRI's?
My mom has had many symptoms due to the location of the tumor, left frontal lobe, I've read some people have had the frontal lobe removed w/ no change in personality etc... I don't understand that at all?

I apologize for this way too lengthy note, but I figured it was important to give some history.

Your experiences, comments and insight will be appreciated.

God Bless you all.

Heather

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

My wife had GBM4 on the left frontal lobe..
The luckiest thing we did was pick up a US News and World Report and find what at the time was the top place in the nation.
Back at home, they were going to leave 80% of the tumor in my wifes head and throw some avastin at it.
But the docs at MD Anderson did a second craniotomy and got it all out...taking out her entire left frontal lobe.
It looks like you have already reached a point in the process so, I'll just answer the questions in our experience..

1. Not sure about this one. My wife was ondecadron the whole month of September and fortunately we did not experience any of that.

2. Hair is growing back good and thick, except for one big bare spot where they probably aimed the radiation...at least that's what I think. My wife gets sick every first dose of the week...real odd, she is fine after that, the rest of the week...she is on 205mg of temodar 7 days and off 7 days.
She was on 250mg a day, but her WCB would not budge from 1.7, so they halted her treatment, then lowered the dosage.
No effect whatsoever on the hair.

3. Bloodwork and MRI every 8 weeks.

Oops missed a question or two:

4. Best time to tke tegretol? I don't know. They have my wife taking it just before she goes to bed..Every Monday night, tuesday morning at atound 1a.m., I can hear her stomach getting ready to discharge.....I wanted her to start taking it in the morning, but she follows orders to the letter..She takes her anti-nausea at 8:30 and temodar at 9:30..
Her last meal is at around 5p.m.

No change in my wifes personality at all..she can't work anymore for various reasons one of which is that she can't concentrate at all....the therapist asked her what 100-7 was at MD A the other day and gave her 5 minutes..she couldn't get it..she'd look around, look at her shoes..pick lint off her sweater....odd things.
Today, I had her make a phone call for me..man, was that a mistake..it took me an hour to clear up all the misunderstandings-ha.

All GBM's are different..We were lucky. My wifes was fairly small and in a place where the docs could get it all..which dosen't mean all that much in the long range scheme of things, but gave us more hope than sticking around our state.
Thank goodness for my sister who had th nerve to make the call to MD Anderson even while I was in pieces at our local hospital.

Best of luck to you!

Heather Q
Posts: 3
Joined: Mar 2010

Thank you so much for taking the time to reply. It is a relief to hear some of your wife's sypmtoms, because my mom too has a difficult time concentrating and like I said before has some trouble w/ tasks that have multiple steps. Recently, she handed me a check she wanted me to mail and it was a mess. We were told that my mom was experiencing swelling due to the tumor, then the surgery and the radiation, and sypmtoms like I described above worsen when the swelling increased. These very same symptoms were how we diagnosed the tumor, so long story shot, its good to know that the symptoms we still see are possibly due to damage to the frontal lobe and don't have to mean that the tumor is growing back.
Thanks for the tips on how to take the temodar. My mom has blood work every week and I'm hoping they will do an MRI every 8 wks but the surgeon mentioned that if her 2nd in April comes back good, they may go to every 3 months.
Your wife sounds amazing. I think I read that she is walking a couple miles a day! Wow, what energy. God Bless.
Thanks again for taking the time.

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

I think the only reason that we are heading to MD Anderson every 8 weeks is because my wife is on a trial.
Although the arm of the trial that she is on is the temodar only arm which dissappointed me..I wanted to go in with both guns blazing (as our radiology oncologist says) but she got the temodar only arm.
Probably after the trial is up we will be going to every 3 month check ups..which is actually good in one way..but I would like appointments more often, I gotta tell you, I'd pay out of pocket for an MRI every Friday night if I could.
Best of luck to you!!!!

Petjea65
Posts: 2
Joined: Apr 2010

Do other people get 2 chemo drugs on the other "arm" as treatment or what is the alternate treatment you are not getting... My daughter tried a new drug called Tarceva which didn't work for her and we are now having to do another surgery (3) since her diagnosis in oct. 09. We are considering trying Temodar and Avastin since the doc was agreable to try...what do you think?

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

In my wifes trial she was given the first arm of the trial which was temodar only.
I was upset at first because I wanted them to go in with both guns blazing.
But she got the temodar only arm.
So far, it has worked out Ok.
She got sick on 250mg, but when they dropped it to 205mg it was a perfect fit.
The treatments she could have gotten in the "8th arm" of the trial would have basically involved temodar, thalidomide and celebrex and one other.
I couldn't have imagined my wife being a part of that arm...
I'm sort of glad now that the oncologist was a little cautious in throwing everything at her at once..moving by degrees based upon the outcome of the followups and always having the option of adding and increasing as we go and could not have done had we of thrown everything at her brain all at once.
We go back to MD Anderson soon and I cannot wait..
I'd carry her on my shoulders to get her back there and that's coming from a guy whose phobias were once flying and hospitals.

horseridr
Posts: 2
Joined: Apr 2010

I decided against that study for the opposite reason, I signed up, was randomized and drew up all of the drugs. Because of that I would have been put on a drug thinner also. I decided it was not safe for me to take all those drugs and ride horses everyday, which is what I do for a living. so I am just on the Temodar.

June

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

Jo is just on the temodar, but that was her luck of the draw in the random drawing!-ha.
We were at Rice Village shopping when I got the call from the researcher.
She could tell I sounded dissappointed when she said that my wife would just be placed on the 1st arm..(I think the arm is actually called a "random comparator" arm or something like that.)
I was thinking "oh boy, my wife got the short end of the stick"
But in the end, I think it worked out well for her because she actually had problems with the dose of temodar that they gave her and they had to reduce it.
While we were riding in the MD Anderson courtesy van (Residence Inn) back in March I was listening to a lady who was dropped off at the Rotary House who was into horses...
Well, maybe she was dropped off at the main building...anyway, she had some great stories on horses and horse training....you may have been her!

good luck to you!

danielgharper's picture
danielgharper
Posts: 13
Joined: Apr 2010

I get MRIs here and there. Your hair WILL grow back. Steroids reduce swelling but have bad side effects. Try a natural supplement, MSM, you can get it at whole foods or a health-food store. I used to be able to feel inflamation in my brain, and my scans showed tons of edema and swelling. MSM always took away the slightly painful and annoying inflamation/pain I felt.

horseridr
Posts: 2
Joined: Apr 2010

I was diagnosed with a GBM 11/08. I went to MD Anderson and had an awake craniotomy and they removed approx 98%. I did radiation and Temodar afterwards and since then have been on the 5 days Temodar every 25 days since. I take mine right before I go to bed, 2 hrs after eating and 1/2 hr after Zofran. I haven't taken Dex in over a year. I lost some use of my left fingers from my surgery and have some short term memory issues, but that could well be from turning 50 instead! Other than that, and a couple of bad days stomach and energy wise usually on day 4 and 5, I live a very normal life. I continue to work (I train show horses professionally), serve on Association boards, travel, etc. Just came in from planting a bunch of annuals after a day at the barn. I return to Houston every 8 weeks for my MRIs. I am thankful that as of my last visit at the beginning of April, I still have no regrowth. I have a GREAT team at MDA. Oh, and my hair did grow back - but with all these wierd curls!

June

basskitty1212
Posts: 4
Joined: Jan 2010

sounds promising. My husband is 49 years old and was diagnosed new years, after surgery they told me he was going to die and I took him to duke where he is currently on a reasearch study. He started phase two today which is 420mgs of temodar and 3 of Topotecan at the same time for 6 days straight, along with avastin every two weeks, this goes on for at least 6 months, I'm afraid of how much zofran I should give him to prevent illness. Phase 1 was only 150mgs of Temodar and radiation and 1 8mg zofran controlled it. But now with 420mgs of Temodar and 3 Topotecan, how much Zofran will he need? Advice needed

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