Immune therapy

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Immune therapy

by swehrle on Thu Nov 16, 2017 06:19 AM

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Hello, my husband is a oligodendroglioma surivior that was originally diagnosed as a grade 2 and has advanced to grade 3 and now possibly grade 4.  He has had two surgeries, radiation twice, CCNU chemo and avastin infusions.  He recently made a turn and has lost a lot of mobility and strength on his left side.  There has been no clarification if the recent damage on his left side is from tumor growth or from radiation. They see enhancement but not definite if it is growth or not...His oncologist now wants him to try Immune Therapy which I know is used more with skin cancer patients.  

Has anyone had the immune therapy or heard of anyone doing this?  We've been on a roller coaster ride!

Thanks, Sue

RE: Immune therapy

by bsta62378 on Thu Nov 16, 2017 02:37 PM

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My dad has recently started on Opdivo for his gliobastoma.  He was on temador and it stopped working in July.  His oncologist tried another treatment lomustein 1 time and the tumor grew.  He had gamaknife in October and now 2 infusions of Opdivo.  The oncologist says this is a long haul therapy that may actually look worse before it gets better.  I can keep you posted.

Keep the Faith

RE: Immune therapy

by ottoh on Thu Nov 16, 2017 03:26 PM

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Hi Sue. My wife had stage4 glio. Had surgery Dec. 9 and grew back 6 months later to larger than before and had another surgery to remove. This last surgery was at UCSF and was the ALA-5 clinical trial. They inject you with a dye the glows floresnt orange when used under a black light. The idea is they get all the can during normal surgery, then they turn out the lights and use a black light that illuminates the tumor so they can get more of it. 

Next we went to MD Anerson in Houston and had immunotheropy there. The took Her own T cells and geniticllay modified them to kill the type cancer she had and every 42 days would re infuse them back into her system. The clinical trial was called the CMV trial. She has been having clean MRI's for over a year now. I also read that, I think the name of the company, Norvartis, is now offering the same treatment. Hope this helps with your research and good luck. Stay strong,you can beat this, it just requires a lot of work. There are more and more people surviving longer and longer. You might also look into THC and CBD oils. We still do them and I am confident that they have helped in our quest. Aloha and god bless you.

RE: Immune therapy

by swehrle on Fri Nov 17, 2017 02:06 AM

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On Nov 16, 2017 3:26 PM ottoh wrote:

Hi Sue. My wife had stage4 glio. Had surgery Dec. 9 and grew back 6 months later to larger than before and had another surgery to remove. This last surgery was at UCSF and was the ALA-5 clinical trial. They inject you with a dye the glows floresnt orange when used under a black light. The idea is they get all the can during normal surgery, then they turn out the lights and use a black light that illuminates the tumor so they can get more of it. 

Next we went to MD Anerson in Houston and had immunotheropy there. The took Her own T cells and geniticllay modified them to kill the type cancer she had and every 42 days would re infuse them back into her system. The clinical trial was called the CMV trial. She has been having clean MRI's for over a year now. I also read that, I think the name of the company, Norvartis, is now offering the same treatment. Hope this helps with your research and good luck. Stay strong,you can beat this, it just requires a lot of work. There are more and more people surviving longer and longer. You might also look into THC and CBD oils. We still do them and I am confident that they have helped in our quest. Aloha and god bless you.

Thank you so much for your reply, it's always nice to hear what others are doing.  My husband is taking the CBD oil as well.  Did your wife have any side effects from the immunotheropy?

Thanks again, glad to hear your wife is doing well!

RE: Immune therapy

by surf2kona on Thu Jan 11, 2018 03:05 PM

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On Nov 16, 2017 3:26 PM ottoh wrote:

Hi Sue. My wife had stage4 glio. Had surgery Dec. 9 and grew back 6 months later to larger than before and had another surgery to remove. This last surgery was at UCSF and was the ALA-5 clinical trial. They inject you with a dye the glows floresnt orange when used under a black light. The idea is they get all the can during normal surgery, then they turn out the lights and use a black light that illuminates the tumor so they can get more of it. 

Next we went to MD Anerson in Houston and had immunotheropy there. The took Her own T cells and geniticllay modified them to kill the type cancer she had and every 42 days would re infuse them back into her system. The clinical trial was called the CMV trial. She has been having clean MRI's for over a year now. I also read that, I think the name of the company, Norvartis, is now offering the same treatment. Hope this helps with your research and good luck. Stay strong,you can beat this, it just requires a lot of work. There are more and more people surviving longer and longer. You might also look into THC and CBD oils. We still do them and I am confident that they have helped in our quest. Aloha and god bless you.

Hi,

I have a friend with GBM that is being treated at MD anderson.  Could you please tell me the name of the trial or doctor at MD anderson, so I can contact them for more details?

Thanks,

Brian

RE: Immune therapy

by ottoh on Thu Jan 11, 2018 03:44 PM

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the trial was the CMV trial and our Dr. Was Dr. Kameha. I hope I spelled his name right. He is in charge of the CMV trial. Hope this helps and best wishes!

RE: Immune therapy

by surf2kona on Thu Jan 11, 2018 06:20 PM

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Thank you !!!

RE: Immune therapy

by TarheelNick on Mon Feb 12, 2018 07:46 PM

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Hi Sue, I've been on Pembrolizumab for a year now to treat Grade III oligostrocytoma. This is after surgery, radiation, and two rounds of chemo. It has been up and down, and I'd say I'm only slightly worse than I was a year ago, with some areas growing slightly. I'm not optimistic of cure, but it seems to be managing growth and spreading somewhat, extending my life and the quality of life I have. I hope this helps. I had to have a cerain marker in my tumor, for it to be a consideration. It's very expensive, but the pharmaceutical company may be willing to pay for it, if your insurance does not. All the best, Nick Costanza.

RE: Immune therapy

by ToddlerFather on Mon Feb 12, 2018 10:32 PM

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Has been determined whether your tumor is Micro Satellite Stable or Instable ? Or the mutation burden ? 

RE: Immune therapy

by TarheelNick on Tue Feb 13, 2018 05:52 PM

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On Feb 12, 2018 10:32 PM ToddlerFather wrote:

Has been determined whether your tumor is Micro Satellite Stable or Instable ? Or the mutation burden ? 

I have no idea.

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