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Father with GBM IV

twincityecho
Posts: 1
Joined: Jul 2007

My 62 year old father was diagnosed with a glioblastoma multiforme IV on May 23rd. It is unresectable and the size of a lemon. It is in his left frontal lobe (language center). He is currently going through radiation and taking Temodar. I cannot find any information on how long he has left given that he cannot have surgery. Does anyone have any information on that? Not knowing how long we have is the worst part of all of this.

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

hi twincityecho. i'm really sorry to hear about your father. My mom has also been diagnosed with GBM IV. She was able to go through surgery, radiation and chemo(temador) but none of that has helped her. We are also just waiting to see if this current chemo we are using is helping. She has used Temador, Avastin w/CPT-11, and now she is on Avastin w/ carboplatin, but she can't do anything on her left side, so we know the chemo's not working. I still hope for the best though.
Here are some websites and numbers that might help you with the surgery.
This was our neurosurgeon, great man.

http://www.healthcare.ucla.edu/institution/physician?personnel_id=8637
-If page doesn't load, then these are his #'s,
Surgery: (310) 794-7788 Patient Appointments
Neurosurgery:(310) 825-5111 General information and referral
Brain Injury/Trauma: (310) 825-5111 General information and referral
Comprehensive Brain Tumor Program:
(310) 825-5111 General information and ref

Here is another neurosurgeon that has special techniques to remove the tumor if it is unoperable. His name is Dr. Hrayr Shahinian, and he is at Cedars Sinai. We have not been treated by him, but my brother's co-worker has had an inoperable hemifacial spasm, and he was able to operate on it through her ear and she is fine(even though i know you are thinking "so, he didn't have a GBM" cuz that's what i thought too, but God is good(if you believe) and he will surely help those in need. So that was great. Maybe it might be of help to you and your father to consult with him. https://referrals.cedars-sinai.edu/physdetail.aspx?pid=146508

that is the website, but if it doesn't load, then this is his contact info.
Office: 8635 W.Third St., Suite 1170W
Los Angeles, CA 90048
Phone:(310) 691 - 8888
Fax: (310) 691 - 8877
Hours
Monday 8:30 AM - 5:00 PM
Tuesday 8:30 AM - 5:00 PM
Wednesday 8:30 AM - 5:00 PM
Thursday 8:30 AM - 5:00 PM
Friday 8:30 AM - 5:00 PM
_____________________________________________
These are the only 2 that i know of. I hope if someone else knows someone they will help you also. I pray for you and your father. Tell him to hang in there, be strong, there's no such thing as "no cure". I hope this information helps you in some way.

StillwaterMan
Posts: 2
Joined: Jul 2007

Twincityecho. I'm very sorry to hear about your father. My brother who is 57 has GBM also(surgery Mar this year). You really need to talk to your father's oncologist/Dr about this. I'm really sorry to have to tell you this but my investigations have found that "The median survival time from the time of diagnosis without any treatment is 3 months". The median survival of all GBM patients is ~12 months. Keep the faith - miracles do happen.

seof
Posts: 826
Joined: Jun 2007

I think you have been given more information relating specifically to your question than I can give...I have no experience or knowledge about GBM, but as a Speech-Language Pathologist would suggest you talk to the Doctor about seeing one asap if the cancer is beginning to result in language impairment. It may not be the top priority at this time. I know there are overwhelming numbers of issues to address with any cancer, but an SLP may be able to help him learn communication techniques that can help improve functional communication and quality of life until the cancer is gone.

pjd61
Posts: 1
Joined: Oct 2007

I am sorry to hear about your father. My 70 yr. old father was diagnosed on 1/4/07, and underwent surgery to right frontal lobe to remove golf-ball size tumor as he has glioblastoma grade IV tumor as well. We were told he would have about 1 month to 1 year, but each person is unique. He also has speech problems, seizures are under control, but has some memory and focusing problems. He is active, more than I can keep up with, but this is his strong will. He's had 6 weeks of radiation and chemo, and then had a month off and started on a clinical trial through mayo clinic which he was chosen randomly by a computer as to which study he would be in...so, he has continued on a 5 days out of 28 of each month of taking temodar. He's lost 60+ lbs, and has many mood swings. It's tough...but I am his only caregiver and his daughter...so I will be with him. I'm just glad to now have others to chat with about this. Hang tight and take one day at a time.

momatabor's picture
momatabor
Posts: 10
Joined: Nov 2007

Dear twincity i truley know how your feeling my brother is 43 and has GBMIV found it in oct,2007 they told him 3/6 months without treatment and less than a year with . I am so very sorry to have to tell you this.I know it seems hopeless. but you must put your faith in god, Ive read through the discussions & chats and some are doing very well 2 years in .I will pray for you and your family, please do the same for us . good luck

Good4u1
Posts: 1
Joined: Apr 2008

Hi twincityecho- My dad, 64, was diagnosed with GBM last Friday, April 25. Golf ball sized tumor 2 cm into his brain, so they couldn't cut it out. That worried me alot and I have been doing a lot of research about it. My understanding is that you can start with radiation and THEN if the tumor shrinks or changes, it may enable resection. However, just because they don't start with surgery is not what is predictive of prognosis. My dad is starting radiation IMRT next week. Make sure your dad is seeing a radiation oncologist and a regular oncologist. They gave him 9-12 months, IF his tumor is responsive to therapy. I hope it works out for you and your dad. Take care.

Lorza77
Posts: 1
Joined: Mar 2012

I'm looking for anyone who is a SURVIVOR of an inoperable brain stem tumor. My father has just been diagnosed with these horrible monster. He did 6 weeks of radiation and was taking temador. He had another treatment which was a trial of temador inserted through a cathather into the brain. He is currently on intravenous Avastin every other week. This is tearing me apart. I want him to get better. He dosnt deserve this. Noone deserves this!!!!! Please give me hope and let me know if there are any SURVIVORS of this inoperable monster. You can also email personally at qt1177ny@aol.com. Thanks

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im a so sorry to hear about your father. Horrible monster.... nightmare...That is what it is. Many of us on this site have been in your shoes, this is a hard road. Some do better that others, and Im not sure why. That monster just does what it damn will wants to.I hope and pray that your father does well. This is a nice place to come for support from those of us who know it first hand... Event, scream, cry, we are here...
my sister -gbm4

tmfaubus
Posts: 23
Joined: Jan 2012

i have a diffuse intrinsic pontine glioma. radiation, temodar, carboplatin, and avastin. nothing has slowed it down for more than a couple months. i have stopped all treatment and am living day by day. scary odds but there's nothing left.

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