Unmethylated/wild type GBM IV - full resection

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Unmethylated/wild type GBM IV - full resection

by Jfelsted on Tue Aug 21, 2018 12:30 PM

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My brother has many things going for him, he’s young (36), the location was in the frontal lobe, and his karnofsky score is perfect. His neurosurgeon remarked that he couldn’t have caught it any earlier, (it was found at a routine yearly MRI not because of symptoms)  all the radiologists and neuroradiologists were shocked when the path report came back as glioblastoma since it didn’t look like your typical glioblastoma on imaging. Upon further testing we were deflated to learn his tumor is also unmethylated as well as IDH1-wild type. While I once feel hopeful and confident that he too can be a long term survivor I am wondering if I just need to be more realistic given the new information of unmethylated and wild type. So I’m coming to you asking if you know of anyone who is a long term survivor that was also unmethylated and IDH1-wild type? Was Cheryl Broyles? I’m sure you don’t like this question but if you were in my brothers shoes would you still do standard of care? Seems like it would do more harm than good given his results. What would you do? His neuro onocolgist is unfortunately very uninvolved which is why we are desperately trying to do as much research as possible.  Thank you!

RE: Unmethylated/wild type GBM IV - full resection

by summersarah on Wed Aug 22, 2018 04:23 PM

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First let me say, I am sorry about your brother having to go through this so young, but you are right - he has a lot of things going for him when it comes to battling GBM. There is still a chance he will be a long-term survivor despite having unmethylated/wild type GBM.
Statistics are not the law.
I will just encourage you not to give up on treatment, it could prolong his life until hopefully a new drug comes along. However small the chance may be, it's still much better than long-term survival with no treatment.
If his doctor is uninvolved,look for a new one right away, waste no time. 

RE: Unmethylated/wild type GBM IV - full resection

by ottoh on Thu Aug 23, 2018 04:44 PM

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you might look into some clinical trials. GW Pharmaceuticals has one foe Glio that uses Temador anf THC with a CBD. Also, MD Anderson is a great place to find other clinical trials. My wife went there 2 or 3 years ago and the cancer has not retuned. She was in the CMV clinical trials. Good luck and God bless

RE: Unmethylated/wild type GBM IV - full resection

by jeanssister on Thu Aug 23, 2018 06:47 PM

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I'm so sorry. My sister has a GBM, and I understand what it means, at least to me, to have a sibling affected by this horrendous cancer. Have the annual MRIs been due to a benign tumor from the past? My sister had a grade II astrocytoma in 2004, and the MRI that discovered her GBM was a routine follow-up MRI, 13 years later.

If his neuro-onc is "very uninvolved," can your brother seek another specialist? I'm not sure where he lives, but there are several cancer centers across the US. My sister is seen at Duke University Medical Center's Preston Robert Tisch Brain Tumor Center in Durham, NC. She receives all her treatments at her local cancer center in Columbia, SC, but it is guided by Duke. 

Every month one survives, is a month closer to potential new treatments. Potential cures. I always keep that in mind. My sister's treatment hasn't caused any severe side effects. I know that's not true for everyone. The Avastin she's on now has been very successful in keeping the tumor at bay.

The link to receive a consultation at Duke, either in person or over the phone, is: https://tischbraintumorcenter.duke.edu/adult-patient-self-re

The phone number is: 919-684-5301.

Best of luck. Your brother and you are in my thoughts.

RE: Unmethylated/wild type GBM IV - full resection

by MargaretS on Wed Sep 05, 2018 07:21 PM

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Your brother is not a statistic!  At this point it is impossible to predict how much time he has. My 65-year-old husband's tumor is also unmethylated and IDH negative.  His first NO didn't think he would last a year, but he has made it more than 30 months since diagnosis.   

The key thing is finding a NO who is nimble and aggresive.  We have gone through two resections and various treatments including hypofractionated radiation, an immunotherapy clinical trial, Keytruda, Optune. a renal cancer chemo and daily TMZ, which has been found to be much more effective for unmethylated tumors than the SOC.  He also takes Celebrex and Prozac to enhance the TMZ.  It hasn't been easy, but he is still biking, hiking, driving and enjoying life.

Getting Optune is a no-brainer.  Median survival of folks who wear it 90% of the time is 25 months versus 16 months for those who just stick with the SOC.  It has no side effects, other than some scalp irritation, and it is just as effective for patients with unmethylated tumors.

Good luck!

You can get the stats here:

https://www.optune.com/hcp/newly-diagnosed-glioblastoma/effi

RE: Unmethylated/wild type GBM IV - full resection

by KB-Austin on Fri Jun 07, 2019 01:40 PM

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I know this post is old, and don't know the status today.  But your message gives me some hope.  My husband is also IDH wildtype, unmethylated, age 59.  He was diagnosed 18 months ago.  We have done TMZ and radiation and 1 surgery, and are about to start with CCUU because the tumor is growing.  There still aren't many options for treatment, so they just - as you said - continue to try different things to see what works.  I am looking for THC oil to combine with the CCUU to help with side effects and also improve it's effectiveness.  Being both caregiver and wife is a blessing and a challenge.  My sister lost her husband (at age 56) to this terrible disease as well.  So we've been down this road together once before.  Blessings to you.

RE: Unmethylated/wild type GBM IV - full resection

by ottoh on Fri Jun 07, 2019 03:00 PM

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Dear KB, long story short, my wife had 2 surgeries for GBM and the last one was at MD anderson. We gave her THC and CBD oil and took her off Dex, and other durgs that the THC and CBD oils replaced. That was in 2016. She just had her lastest MRI and is still clear. The THC will help your husband with nausea, sleep, appitite, and when combined WITH CDB oil, can help with GBM. I'm convienced it is one of the main reasons she has been doing so well. My point is, give him CBD and THC together. Google GW pharmacuticals and their clinical trials with this. They have been showing promising results. Good luck and our prayers are with you. Aloha

RE: Unmethylated/wild type GBM IV - full resection

by MargaretS on Fri Jun 07, 2019 08:06 PM

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On Jun 07, 2019 1:40 PM KB-Austin wrote:

I know this post is old, and don't know the status today.  But your message gives me some hope.  My husband is also IDH wildtype, unmethylated, age 59.  He was diagnosed 18 months ago.  We have done TMZ and radiation and 1 surgery, and are about to start with CCUU because the tumor is growing.  There still aren't many options for treatment, so they just - as you said - continue to try different things to see what works.  I am looking for THC oil to combine with the CCUU to help with side effects and also improve it's effectiveness.  Being both caregiver and wife is a blessing and a challenge.  My sister lost her husband (at age 56) to this terrible disease as well.  So we've been down this road together once before.  Blessings to you.

Dear KB-Austin -

I am sorry to hear that you and your husband is going through this and that his tumor is growing.  I am wondering whether he has tried Optune. Also, did your husband do Temodar daily on the standard dosage? Was genomic testing been performed on the tumor?  That was how we were tipped off to the possibiliy of Torisel. 

I really do feel that daily Temodar and Optune saved my husband.  My husband's tumor grew on THC, so I don't put a lot of stock in it.  

I understand your anxiety about reaching out after all the time since my last post.  I am happy to report that my husband has been doing great.  In fact, he just left for a two-hour bike ride. 

Good luck!

RE: Unmethylated/wild type GBM IV - full resection

by KB-Austin on Fri Jun 07, 2019 10:09 PM

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Yes, they did genetic testing once on the biopsy and will do again on the tumor.  He did do temodor weekly during the first round of treatment in 2018 along with radiation.  Our NO says if the lomustine doesn't work we will try daily temodor with optune.  I'm so glad to hear from you!

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