A more aggressive treatment

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A more aggressive treatment

by Jadore on Thu May 18, 2017 09:34 PM

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Hello,
My dear husband was diagnosed last December with a Glioblastoma grade 4. He just finished his second round of Temodar at a higher dosis. He had a "full" resection and 33 rounds of chemo.
I asked our NO if we coukd be doing something else besides Temodar, as I have read Temodar is not enough. He said no until there is recurrence. My question is why to wait until tge worse scenario happens and that is what we are trying to avoid? He said Temodar is the only treatment fir that and witb that the chances of recurrence are 100%.
We went last Friday to see a different NO who thinks outside the box and does othere treatments but they are mire aggressive. Is a cocktail or combination of 3 different chemo drugs: Temodar, CPT11, and BCNU.
He conducted a very promising study with double life expentency than with Temodar only.
Has anyone tried somethig similar? It sounds promising but it scares me to put more poison.
Thank you and Gob bless you all

RE: A more aggressive treatment

by Lucky7penny on Fri May 19, 2017 02:30 PM

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Hi Jadore,

I am in the same boat with my wife and have the same frustrated mindset -- why can't we do something more proactive to keep it from coming back!  We have been blessed with 14 good months since surgery but the waiting game is terrible.  I'm in Boston and I've heard the same as you from the medical establishment and as far as I know there isn't anybody here that thinks outside the box.  Would you mind sharing your new NO's name and info/access to that study. Thank you.

RE: A more aggressive treatment

by Dodgerblue on Tue May 23, 2017 01:57 PM

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The idea behind the "establishment's" treatment protocol, is to save more aggressive treatments for time when lesser ones are not working or no longer effective.  Temador is effective for some, when it isn't, something else is tried.  Unfortunately, there isn't a clear path how any one's person journey will proceed, as everyone seems to be a bit different.  I would suggest you try not to focus on when the the other proverbial shoe will drop as recurrence rates are high, that is easier said than done.  There are many long term survivor's out there with GBM, stay hopeful!  

Dodger

RE: A more aggressive treatment

by Jadore on Tue May 23, 2017 07:44 PM

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Hello Luck7penny,

Here is Dr. Arenson's web site. There is information there about his aproach. 

http://www.braintumorhope.net/results

RE: A more aggressive treatment

by wagthecaregiver on Tue May 23, 2017 08:29 PM

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On May 18, 2017 9:34 PM Jadore wrote:

Hello,
My dear husband was diagnosed last December with a Glioblastoma grade 4. He just finished his second round of Temodar at a higher dosis. He had a "full" resection and 33 rounds of chemo.
I asked our NO if we coukd be doing something else besides Temodar, as I have read Temodar is not enough. He said no until there is recurrence. My question is why to wait until tge worse scenario happens and that is what we are trying to avoid? He said Temodar is the only treatment fir that and witb that the chances of recurrence are 100%.
We went last Friday to see a different NO who thinks outside the box and does othere treatments but they are mire aggressive. Is a cocktail or combination of 3 different chemo drugs: Temodar, CPT11, and BCNU.
He conducted a very promising study with double life expentency than with Temodar only.
Has anyone tried somethig similar? It sounds promising but it scares me to put more poison.
Thank you and Gob bless you all

My wife was diagnosed on April 10, 2014. She just finished having her third resection surgery. Her 1st tumor was the size of a boiled egg. It went from nothing to boiled egg size in two months. We did the normal protocol after surgery. Radiation and Temodar 6 weeks followed by a year of temodar. After she finished the year of temodar it came back a second time. Second surgery was December 28, 2015 followed by temodar avastin, Optune, then back to avastin and CCNU. Fast forward now she just had her third surgery and did very well. Our original N.S. said it was too risky to do surgery a third time. We went to Cancer Treatment Centers of America for a second opinion. The Nuerosurgeon there was confident that he could not only remove over 90% of her tumor but she would still have great quality of life. She had surgery May 11, 2017 and we were out of the hospital and on the way home by noon on May 13th. She is doing very well considerin she went through surgery three times. Her pain is much less than the first two times. We have been blessed to have a very large prayer network and people from all over the country and overseas that have been praying for her throughout. During these three years of survival we know that the most important thing is to keep his immune system strong. Chemo and radiation and any other protocol that the hospitals use can wipe out the immune system which is what sometimes kills the patient. My wife has held strong and has never gotten sick during this time. She has been on as many supplements as she can to combat anything that would knock out her immune system. We are still praying that she will be here for many years. We don't know, that's in God's hands. But we will pray for you and your husband that God will put the right people and protocol in front of you. Keep praying and watch God work in your lives. Have to go now and will check to see if you respond to this. God bless.

John

RE: A more aggressive treatment

by Lucky7penny on Tue May 30, 2017 09:47 PM

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Wow John -- your wife is a trooper and an inspiration!  I love the never give up spirit!  Would you mind sharing what some of those supplements are that your wife is taking?  Thank you and keep staying strong.

RE: A more aggressive treatment

by wagthecaregiver on Wed May 31, 2017 12:09 PM

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On May 30, 2017 9:47 PM Lucky7penny wrote:

Wow John -- your wife is a trooper and an inspiration!  I love the never give up spirit!  Would you mind sharing what some of those supplements are that your wife is taking?  Thank you and keep staying strong.

Hello Lucky7penny,

I will get her entire list of the supplements she has been taking and put it on this discussion. Thank you for the kind words. She is going for her follow up appointment with the surgeon that did the surgery. It will be good for us to hear what he has to say. She is doing good. Her faith has been strengthened with this surgery. God has really been good to us. She continues to take all of her supplements to keep her energy level up and her immune system strong. And you know how all medical knowledge tells us never to eat anything with sugar because sugar feeds cancer. Well my wife said to me that because this is a terminal cancer she still eats desert once in a while. She hasn't completely eliminated sugar from her diet. To me that's amazing because she is still here with good quality of life. I hope your situation is going well. I will pray that whatever is going on in your life that God will get you through it. Have a wonderful day. I'll respond again soon with the list of supplements. 

John

RE: A more aggressive treatment

by debbipurple on Wed May 31, 2017 12:25 PM

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John, what a great story of success! What type of supplements does she take for her immune system. I need to get my husband on them, although he doesn't want to take any more "pills". How long was she on Optune? Thank you and God Bless you both. 

Debbu

RE: A more aggressive treatment

by Jadore on Wed May 31, 2017 01:17 PM

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Thank you John for keeping me and my husband in your prayers. Your wife seems like a very strong and positive person, so is my husband. Please share the suplements she is taking to keep her immune syste strong. Although this disease is not curable righ now, our doctors told us not to call it terminal yet and I do not like that term neither. He said terminal is when you have exausted all treatments and there is nothing else to be done.

RE: A more aggressive treatment

by debbipurple on Wed May 31, 2017 07:28 PM

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I will be following this thread also for my husband! Thank you Lucky7Penny

Debbi

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