Questions about glioblastoma resection, radiation afterward

Posted by tracyknabel @tracyknabel, Oct 1, 2016

Hi. My husband was dx in Nov 2015 with grade IV glioblastoma. He had a biopsy but never a resection. (The tumor was in the thalamus region.) He began chemo and 6 weeks of radiation. He finished chemo in August. As of Sept 6th, the tumor has grown somewhat (encompassing the hippocampus) and the neuro-oncologist wants the resection done. His neurosurgeon thinks he has time however and should consider maybe more radiation. My question is this: why does my husband have to wait a year from the time his radiation ended to have another round of radiation done? And is it true that resection can cause the tumor to grow even faster? (The thalamic tumor cannot be removed.) Thank you for reading this.

Here is a listing of all glioblastoma related trials (national and international studies) from the NIH Clinical Trials database https://clinicaltrials.gov/ct2/results?term=Glioblastoma&Search=Search

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One piece of advice: Always ask what is the least amount of treatment and/or surgery you need to qualify for any study. Be sure to ask along the way about things you may inadvertently do that would exclude you from further studies.
Until I looked into options and flew to Rochester to meet with my Mayo team, I was not aware that the Temodar wafers placed during my first resection disqualified me from the polio study. I spoke briefly with Dr. Friedman at Duke who informed me of this, so that door was closed from the start. I advised him that I still felt the wafers were an important step with the initial resection, and that I was disappointed the neurosurgeon in Tucson was unaware of this issue.
The last thing any of us GBM victims want is to close the door on options. So, I am an oncolytic measles patient, doing well. My last MRI, late August suggested tumor progression, so I am on Avastin every other week. I was assured that this would not exclude me from the MATCH trial Phase I coming out that matches genomic cataloguing with best results chemo for GBM. I am not apparently a candidate for the heatshock vaccine, but it is still too early to know where that stud is headed.

Take care. Remember, the bottom line is that GBM is NOT cured by surgery. Combinations or series of interventions are needed to try and control this disease. Personally, I have had four open surgeries and have done very well post-operative. I have, however decided that I WILL NOT undergo any further surgery to push my chances of significant morbidity. I have NO neuro defecits other than short term memory issues, and that may all be stress and post radiation therapy related anyway.

If any one would like to call me, let me know and we can set up a safe transfer of information.

Belinda Uhall MD

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Colleen’s resources are amazing. Call them. Get informed.

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@user_che69bc66

Colleen’s resources are amazing. Call them. Get informed.

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Lost my post…..darn.

Take care of yourself your caregivers.

#1 Get your depression managed. I am taking Effexor with Haldol and Ambien for sleep. These have been magic for me, because I was nearly suicidal. It was taking it’s toll on my family. Now, I am rested and no longer depressed. My family thanks me and attends counseling and church with me as well as sets up my medication weekly holder. We sit to set my schedule so they can hopefully attend. I also bought and drive a car, which gives me great independence.
#2 Find friends and/or faith to provide relief of worry, guilt or emotional turmoil.
#3 Remember always: there is NO right or wrong path. each of us GBM victims is unique. At a decision point, you will bring all your special needs and experiences that will impact your choice. Use all that information and experience to your benefit.
#4 GBM is terminal, so no choice can be worse. We need time and quality of life.
#5 Consider alternative medical interventions. I have found aromatherapy very comforting. My daughters choose the essential oils and we combine recipes. spa-like seems best so far. The crazy diets out the have no real proof of benefit. The paleo diet made me depressed and lose too much weight. Now I eat what makes me happy.
#6 Settle your final plans with you ur family. This means funeral and estate planning. Your family has this huge burden on their minds daily. Get is done for them.
#7 Smile 24/7. Try it for a days. It is contagious….look in the mirror and smile at yourself first.

We are all related in a very intimate way with the GBM. If anyone has advice or special needs, let us help each other help ourselves and our caregivers.

Love ya all.

Belinda, smiling and hopeful for grandchildren someday.

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@user_che69bc66

Colleen’s resources are amazing. Call them. Get informed.

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Belinda, thank you for all that you have shared!!!! One of my best friends is living with GBM (three year survivor) and is a patient at Duke, though she has not yet needed to enroll in a clinical study. She followed a strict anti-cancer diet for the first year post surgery (glial wafer added) and chemo. She now follows a strict organic diet, mostly vegetarian; she exercises daily, meditates, and has massage therapy once per week. She also drinks at minimum 8 glasses of water daily, which she feels reduces the side effects of her chemo.

I wondered if you have been in touch with Cheryl Broyles, a 16 year survivor of GBM!!! She has undergone and recovered from many surgeries, and shares her story on her website and on Facebook. She wrote to me personally when my friend was first diagnosed–which gave me so much hope! She is amazing, and such an inspiration, as are you! My friend also goes to a therapilates counselor who also taught her about “smile” therapy. “Don’t until you are happy to smile; SMILE FIRST, and it WILL make you happier.” She was also taught about stacking her joints/body when walking that would make her feel better, and help to recover her poster. Head directly over shoulders, directly over hips, directly over knees (straight,directly over feet). Also, Cheryl Broyles shares MANY tips on her website. All sources and advocates have encouraged my friend to practice the power of positive thinking (easier said than done).

Wishing you the best. I pray for a cure, and for improved treatments and life style measures!

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@cure

I’m about to enter a clinical trial at Columbia in NY City for GBM. This requires further surgery to remove tumor growth. Depending on what leg of the trial I end up in, they will then devolop vaccine from the tumor material and infuse that back into me over several months. Any thoughts or opinions?

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Jeffrey Bruce,MD

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My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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@dfelix

My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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Good day, @dfelix I am Scott and it is nice to e-meet you here. I am sorry for the travails your sister is undergoing. I send peace, strength, and courage. My wife fought GBM for 14 years. After her diagnosis her tumor remained slow growing, then it suddenly accelerated. Due to the location and other considerations the only intervention she chose was an early resection. Even when her tumor got more aggressive at Stage IV she chose home hospice as her option. She defied the doctors’ best guesses of 6 months or less and won her war for 14 months. Unfortunately I have no advice on newer technologies, but I am sure they are legion! I know Dr. Daniel Lachance at Mayo Rochester has been involved in some truly phenomenal research on DNA fighting approaches to brain cancer.

I was her 24/7 caregiver during her war so if you have any caregiving questions feel free to ask.

Peace!

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@dfelix

My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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Thanks for your response. My brothrt in law is her primary care give and he is overwhelmed right now.  I’m going to heil him.  Thanks again.  Dennis

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@dfelix

My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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Hi @dfelix,
I add my welcome to Scott’s. You’ll notice that I moved your messages to a discussion thread where members are talking about GBM and clinical trials. I encourage to read through the past messages. Here you’ll meet @taterjoy @user_che69bc66 @cure @sandydominy1 and @dawn_giacabazi, some of whom have experience with clinical trials.

We welcome your questions.

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@dfelix

My sister has GBM and had surgery and chemo and tumor has come back. Looking for a good FDA study or some newer technology. Or just some advice from people with similar experience. Thanks

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Hello, I’m helping a friend who was diagnosed with stage IV GBM on Jan. 26. She had resection and has been recommended to start radiation and chemo, which was supposed to begin on Monday. She wants to do more research before she decides to pursue treatment. I think she’s most concerned with how to know if her quality of life will be affected so badly by treatment that she’d rather have a few months of good quality of life than any additional time treatment might buy her. We live in Denver. She is 68, in excellent health (other than GBM) and great physical shape. The radiation oncologist said that was a good indicator of how well she would tolerate treatment. If anyone has any suggestions about treatment or resources in Colorado I would love to hear them.Would radiation alone cause fewer side effects and be a possible option? Or chemo alone? We are going to a local brain tumor support group today, which I hope will help. She is aware that statistically they are known to work better in combination but is open to not doing that if it helps her quality of life. I’ll also be asking questions of some of the members about clinical trials. Thanks for your help!

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@colleenyoung

Thanks for reanimating this discussion Belinda.
For anyone interested, here is more information about the GBM clinical trial at Duke: “Targeting Cancer with Genetically Engineered Poliovirus (PVS-RIPO)” https://www.cancer.duke.edu/btc/modules/Research3/index.php?id=41

You’ll notice that this is a phase 1 clinical trial. They are planning phases 2 and 3. You can learn more about the types of trials and their phases here: http://www.mayo.edu/research/clinical-trials/about-clinical-studies

@cure what is the clinical trial you will be starting?

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It seems like the clinical trials are for people who have already tried radiation and chemo. Does anyone know of a trial for someone who would rather pursue something instead of radiation and chemo? Thank you!

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