cyber knife for treating GBM

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cyber knife for treating GBM

by kpeasley on Wed Oct 29, 2014 12:06 PM

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Hi, My husband who just turned 50 years old was operated 28 days ago for GBM. He had sever complications after the surgery of inflammmation. They were able to get out 80% of the tumor. He is still in the hospital trying to recooperate his right side movement and his speech. I am investigating treatments and have heard a lot about the cyber knife for radiotherapy. Has anyone gone through this treatment? This is a new life for me and I feel like I am living a nightmere. I feel helpless and want to do everything I can to get things moving and start treatment. How long.before they start chemio? I know he had complications ffrom surgery but I just hate this waiting and doing nothing while that horrible tumor continues to grow. Any information would be so appreciative. Kelli

RE: cyber knife for treating GBM

by Dchepul on Wed Oct 29, 2014 02:08 PM

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So sorry to hear about your husband. I will give you information as it was given to us by our doctors. My husband was dx at age 42. This was 2 years ago now. They started him on radiation 10 days after surgery along with the chemo pill temodar ata very low dose. He went through this for 33 visits for radiation. ( no weekend radiation ). Then all stopped for 4 weeks while they waited for the brain to rest after radiation and did MRI. He then went on very high dose temodar on the 5/23 schedule. 5 days of pills and off 23 days. Now, we were told they would not start radiation until the surgery site healed. He did very well after surgery with no deficits. His was right frontal lobe with 95% removal. Mynhusband was never qualified and still is not for cyber knife radiation due to tumor that was left was too large and that goes for today as well. He has three tumors and all are too big for cyber knife. I hope this answers some of your questions. But, please keep in mind, all doctors do things differently and on different timelines. My husband got radiation within 10 days of surgery but I know others who did not start any treatments for at least 6 weeks due to they needed to be stronger for radiation. Best wishes and I pray all will get better soon. D

RE: cyber knife for treating GBM

by rmp1399 on Wed Oct 29, 2014 02:09 PM

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First, I'm so sorry you have to go through this. But this is a great place for information. My mom (64yrs) has gbm, right frontal portion of the brain. She was in rehab with her left side weak. She was there for I believe four weeks. She did regain everything. She started chemo/radiation after that. I believe you will wait a couple weeks to start treatment. His brain needs to heal before they hit the tumor with therapy. I was worried about the timing as well. I know they wouldn't have waited longer than four weeks. I have no info on cyber knife, I'm sorry. Hopefully someone will have insight. It's very overwhelming at the beginning. I researched and researched....and still do. My mom is almost at her two year anniversary mark and she has completely clear MRIs with little deficits. She has small balance issues and some short term memory loss. Stay positive, try not to pay attention to the statistics and research clinical trials. My mom is in the CDX 110 trial and that is currently the only medication she receives. Stay strong!

RE: cyber knife for treating GBM

by FranLazerov on Wed Oct 29, 2014 06:45 PM

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So sorry to hear about your husband and yourself.  Any kind of cancer is scary stuff.  I had cyberknife treatment for lung cancer in 2007 and I am still here.  It started in 2002 when I had my upper right lobe surgically removed and the Dr found a small lesion in the lower right lobe.  I know your husband has a brain tumor, but in my case, there were  no ill effects from the cyberknife treatments.  I have been a non smoker all my life, so the whole thing came out of left field.  Take things a day at a time and hope your husband can have the cyberknife treatment.  In the meantime,  take care of yourself as well. 

RE: cyber knife for treating GBM

by michalisk on Wed Oct 29, 2014 10:42 PM

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Hi Kelly, 

I m so sorry about your husband.

My mom was diagnosed with gbm and other tumors in the brain (cerebri) in may 2013. No surgery option. She's still alive and now she is too depressed as she completed the 2nd brachytherapy in Germany. Before Germany, she had a great summer, she cooked and she had an almost 'normal' life. I hope to be as she was before brachytherapy soon.

As I ve understood,  cyber knife is for tumors up to 3.5 cm and it is a focused to the tumor radiation. I do not believe that your husband could have cyber knife at this time as this therapy is for nonsurgical tumors but I may mistake. Most probably your husband will follow the standard treatment radiation and temodar. However, you can have cyber knife in the back of your mind for the future. Similar, save for the future brain brachytherapy and proton therapy. Both of them seems to be the state of the art in the stereostatic focused radiation. 

What I can say during this trip is to not check statistics and try to be as much positive as you can.

Try to express your love to your husband and also check alternative approaches in parallel with conventional treatment. Diet, supplements, yoga, reiki, botanical whatever fits to your heart and will give you the feeling that not only Drs but also you fight this disease.

My best wishes Tobe positive and strong to support him

RE: cyber knife for treating GBM

by kpeasley on Wed Oct 29, 2014 11:03 PM

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Thank you all so much for not only inspirational words, but experienced información, which are both what I so needed right now. I feel stronger knowing I am not alone in this fight. Thanks again to all of you.

RE: cyber knife for treating GBM

by hsh11942 on Thu Oct 30, 2014 12:22 AM

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On Oct 29, 2014 11:03 PM kpeasley wrote:

Thank you all so much for not only inspirational words, but experienced información, which are both what I so needed right now. I feel stronger knowing I am not alone in this fight. Thanks again to all of you.

I'm sorry that you are on this journey. My dx was initially a GBM. The final diagnosis was an Anaplastic Ependymoma III. My tumor was to big for the cyberknife. They used the Varian trilogy for my radiation treatments. I received 30 treatments. The Varian trilogy can treat larger tumors than the cyberknife. Have you given this any thought? I am nearly three years from surgery/radiation. I am doing well with no neurological decificts. God has blessed me with wonderful, caring doctors. I will be praying for your husband and your family. 

RE: cyber knife for treating GBM

by johnjptjpt88888 on Thu Oct 30, 2014 12:28 AM

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On Oct 29, 2014 12:06 PM kpeasley wrote:

Hi, My husband who just turned 50 years old was operated 28 days ago for GBM. He had sever complications after the surgery of inflammmation. They were able to get out 80% of the tumor. He is still in the hospital trying to recooperate his right side movement and his speech. I am investigating treatments and have heard a lot about the cyber knife for radiotherapy. Has anyone gone through this treatment? This is a new life for me and I feel like I am living a nightmere. I feel helpless and want to do everything I can to get things moving and start treatment. How long.before "" target="_blank" rel="nofollow">http://long.before " target="_blank" rel="nofollow">long.before they start chemio? I know he had complications ffrom surgery but I just hate this waiting and doing nothing while that horrible tumor continues to grow. Any information would be so appreciative. Kelli

Hi Kelli, I had the Gamma knife therapy twice 12/2013 & 07/2014. I was diagnosed GBM IV 10/2013. I describe the Gamma knfe as the yard man who comes in to trim the shrubs back. I have had great results with Gamma. http://www.miamineurosciencecenter.com You should be very aware that Gamma is NONSTANDARD radiation and can preclude you from many clinical trials, have your doctor explain to you why! After literally 1,000's of hours of research to save myself and take charge of my survival advocacy and because of my product development/innovation background I am not your average GBM patient nor should you or your husband be! Keep Thinking outside of the box and moving aggresively will be your best survival allies... I recently had a preoperative meeting with Dr Chen/UCsd regarding my scheduled 11/2014 laser ablation procedure where I asked him if it was possible to combine the NOVOTTF with the laser ablation and he informed me that he recently treated a patient that had done both. THe key here is throw as much at it that will NOT, harm the patient in the process:) As you and many here ARE wrapped in a miracle if you ask for it. Go forward with the knowledge that no Weapon formed against your husband will prosper... That is The Lord's promise to all of us. PLease take the time to review the GBM / cancer cures coming out of Novogen.com . Watch all of the YouTubes.

RE: cyber knife for treating GBM

by tjsadowski on Thu Oct 30, 2014 12:53 AM

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You might also check Virtual Trials web site which has a lot if resources including an on line support group and a document by Dr Ben Williams a 20+ year GBM survivor. It explains what GBM is all about and discusses all of the current treatments both medical and alternative. It is a tough journey but there is a lot of help and support. The site also list top brain tumor treatment centers in case you seek a second opinion.

RE: cyber knife for treating GBM

by Dreamgirl on Thu Oct 30, 2014 12:53 AM

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Hi Kelly,

I am recently diagnosed with Oligodendroglioma in Frontal Lobe. I have had surgery, 6 weeks of Radio & Chemo, a months break and now back on Chemo. Probably feeling the best I have felt in years. However, I too am searching for any possible advise / solutions in case I don't get the results we all want. Can you please tell me what the German Brachytherapy and proton therapy is and what they do?

I wish only the best for your mum,

Deb

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