first post. . . my sister has a GBM IV

frederick · New User Joined: 11 Nov 2008 Posts: 3

Hello everyone,

to Tamayles, Anguss and Siren8, I read your threads last night and feel like we have much in common. My sister was diagnosed with GBM IV in late July. She had bad headaches, three minor accidents in her car and was losing motor control. Her doctor apparently did nothing except write a prescription for Lortab.

She was diagnosed during a vacation to visit her eldest son. The doctors in Omaha NE did a scan and found it immediately. They operated to relieve pressure, then went back and did a resection/debulking. She also received SOC radio therapy directed at the tumor and chemo with temodar/temolozide (not sure of the spelling). After that course of treatment, she was able to return home. Everything that happened to that point was related to me through her son. I'm not exactly sure of the dosage and duration of treatment. By all accounts she was able to tolerate the whole thing pretty well.

She is living in her own home now and seems to be doing well. Her daughter lives in the same town and is the primary care giver. She's feeling pretty lost right now and so am I. We had a wonderful, terrible, sad, loving, and tearful conversation last night. I have committed to move so I can be close enough to do what I can. Right now, I'm 300 miles (500 k) away and am trying to organize things so I can leave. At times in the past I haven't been the best brother, or best uncle I can be. I hope to make up what I can.

I see my role as helping her live the best quality of life possible. I'm not sure what that will look like. Part of that will be up to her. She is about to begin a new course of therapy that will be 450 mg of temo???? for one week out of the month for the next six months. I read last night that it can be particularly brutal. I would appreciate anyone's knowledge of what I might expect.

I came here because I need you people and the knowledge you've earned by walking the path I'm now on. For those reasons and because there's really nowhere else. My niece is seeing a psychiatrist. . . and I've decided to come here. Perhaps she'll decide to join us. I'll show her the forum when I get up there.

Thanks everyone,

frederick

Kristalee · Regular Joined: 06 Nov 2008 Posts: 24

Hi, so sorry to hear about your sister. I think its awesome you are planning on moving to be near her. It's quite a shock to hear the news of a brain tumor,but there is hope!
It seems with these tumors, there are no two alike. Keep praying and hoping! My hubby has one, Astrocytoma grade 3. At first I decided not to search the web on brain tumors, but now I'm glad I did. There are some really great news on treatments. You should check out Avastin. The FDA is working on making it a new treatment for GMB IV.
Ask about clinical trials too!
Diet seems to make a difference as well. As soon as Mark is through with his radiation, I plan on giving him Maitake mushroom extract and flaxseed oil. It might sound kooky, but I'm willing to try it! Also green and white tea is great! It will boost her immune system before the chemo and radiation. Dr's say to limit the intake of antioxidants during radiation though.
I'll be praying !
Krista

brainman

Oh frederick, I am so sorry about your sister. My mother died of a GBMIV 10 years ago and I am a 16 year survivor of another glioma.

Temodar is often used with radiation therapy at first for a GBM. The side effects are minimal in comparison to other chemotherapy alternatives. She might feel very tired during her treatment.

You and your sister are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Anguss · Regular Joined: 10 Sep 2008 Posts: 31 Location: England

Hello Frederick.

I am so sorry that your sister has GBMIV.

The difference between our two stories is that your sister has had surgery and chemo, which offers a better prognosis. Sadly my mum received neither (she did have steroids and radiotherapy, both of which she tolerated very poorly and from which she suffered severe side effects) and passed last Friday... ten weeks from initial diagnosis.

I have limited experience of brain tumours but it has touched my life dramatically this year. If there is any way that I can support you through this, please do not hesitate to contact me.... I have found this site to be a fantastic resource and I'm sticking around.

Thinking of you.
_________________
"Walk Tall Jill"

ksplat

Hi Frederick
I am so sorry to hear about your Sis & her GBMIV! I'm glad you found our forum though because it's a great source of information & support. I found the support here very comforting during my Bro's battle with a GBMIV. It's a bloody hard road...well it was for my Bro!
My Bro found the Temodal easy to take. He was on the monthly cycle of 5 days on 23 off. The fatigue played a big roll in his overall wellbeing. He was on other drugs too.
It's wonderful that you will be moving to be close to your Sis. I lived just over 1hrs drive away from my Bro. I found this to be difficult, that I wasn't close by.
I do hope & pray that your Sis will have a very positive result from her radiation & chemo, I pray for you & your family. Remain positive for your Sis's sake, a positive attitude will be imperative. As for food...I know an organic approach will be a good start. Google away on anything you can try. Being informed is the best way to approach this.
Because a GBMIV is such a serious brain tumour I believe you have to keep the tumour "guessing" so trying various approaches will be the way to go.
We look forward to sharing your story here on the forum.
Please pass on my love & hugs to your Sis.
Thinking of you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

frederick · New User Joined: 11 Nov 2008 Posts: 3

Thank you all for the kind replies. I've been getting ready to move north and have only talked to my sister by telephone. She's just finished the first 5 days of the Temodar so I guess she'll have 3 wks off. I'll try to get a look at the doctor's reports when I get there. . . I really know very little right now.

She has an amazing outlook about the whole ordeal, much like the courageous stories I've read here. I intend to be there to spend as much time with her as possible.

I've read some interesting posts here about how families react to GBM and tx of a loved one. I guess I'll find out more about how well my niece and nephew deal with the situation when I get there.

Again, sincere thanks to everyone here. Only you know how very much it means.

sincerely,

frederick

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