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If you have a heart, Please Help.

czeytuntsyan91's picture
czeytuntsyan91
Posts: 3
Joined: Jun 2007

My mom,(who is ONLY 44 years old) was diagnosed with GBM grade IV, last year on July 30. She underwent a craniatomy, followed by a rigorous course of radiation, and Chemotherapy(Temazolomide). Her MRI's were clear for about 5 months, and then in February, she fell, and an MRI showed edema surrounding the tumor bed. They gave us decadron, and the oncologist stopped Temador. We then started a new Chemo called Avastin with CPT-11. This worked for about 6 weeks, and a recent MRI has showed an enhancement. Currently, we are on Avastin with Carboplatin. My mom is also on homeopathic medication, and she takes many immune-boosting supplements. However, her walking has become severely terrible. Her tumor is at a spot that makes her forgot her left side. (Right Parietal Lobe, which is infiltrating the corpus collosum, with a mid-line shift). We are considering 2nd surgery, but our neurosurgeon is not confident everything will go well. He says whatever effects the tumor might cause in about 3 or 4 months, the surgery will ensure those effects right away. I'm only 15 years old, and I feel like there is a big block in front of me and my family. If anyone out there is a survivor or knows anyone that has survived, PLEASE don't hesitate to contact me. I am open to any suggestions that might give her a few more months to live. Please, I'm begging anyone. My mom is my life, and I can't bear the fact that she is suffering. Thank you. I pray for all and anyone that has(or had) to suffer through any of this.

-Christina Z.
(We are at UCLA Medical Center)

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

Bless Your heart. This is not an easy road your on. My mom fought for 16 months.
I know other who have lived 4 years and are doing ok not well but ok.
My mom is not one of them, she passed away June 7th.. I'm 44 but that does not make it any easier. I wish I could help you. Hang in there, spend time talking with your mom, you will charish the time.

I'm so sorry
Janine

cnall
Posts: 2
Joined: Mar 2005

Hi Christina,
There is hope. My husband was diagnosed with a GBM in December of 2004. He had surgery, chemo, radiation & then we went to Duke. (They are the most wonderful, caring people in the world.) He did a full year of CPT-11, CCNU & Temodar. The next year, he did Tamoxifin. As of April of this year, he is not on any meds & is doing great! There is hope!
Hugs to you,
Carol

StillwaterMan
Posts: 2
Joined: Jul 2007

What is CCNU?

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

CCNU is another chemo...My mom was on it also for 6 weeks, also the waffers they can insert during surgery are a form of CCNU.
Good Luck, Janine

tommyd
Posts: 4
Joined: Jul 2006

dear christina, my wife is dying from gbm 4 and I totally understand what you are going through and what i say may not sit well with you right away. You should think not only about adding a little time here or there but also about how you can help make her remaining time as good as possible. its diferent for everyone. My wife got to a point where she decided not to continue treatment so that she could have some peace and controll in her life. She has taught me such amaing things about courage and strength and how to live each day. I totally relate to the crusing feeling you talk about and i advise to to keep reaching out to people hun and dont try to go it alone. I pray for you also and I think God recognizes your compassion. That for me now is my greatest wish also that my wife will not suffer. Good luck Hun and God bless you, ? is she still able to express her wishes and if so what are they? , sincerely with empathy Tommy

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