Glioblastoma Resection

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.

Liked by Belinda

@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!

Liked by sunshine06

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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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@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 @cbrice Nice to e-meet you here. Sorry to hear of your friend’s health challenges. They are always tough.

My wife was 49 when she was diagnosed with brain cancer. She fought her war for 14 years while I was her primary caregiver. So my viewpoint only comes from that which I witnessed and spoke to her and her medical team about.

I would offer this one bit of advice, which we found helpful. Cancer, and especially brain cancer, is a unique disease which attacks each patient in a novel and sometimes very individualized manner. My wife made her care decisions based on things she decided before her first medical intervention, which happened to be an emergency craniotomy, so right away you can see her case is different. She however said she wanted quality over quantity and made her subsequent decisions following that with what she called her Main Directive. She made many other choices along the way, but they were all guided in light of her overarching initial decision.

I won’t publicly say what her care decisions were since I am sure they were unique to her situation, area of the brain affected by the tumor, and our family situation. None of which might be applicable to any other patient, so describing them could serve to raise or crush another’s expectations.

I will also say there is no such thing as having too many early discussions with your medical team! My wife had fabulous support from her neuro-oncologist at Mayo Rochester and her neurosurgeon there as well. They, more than anyone else, helped her become at ease with her decisions.

Peace, courage, and strength

Liked by taterjoy

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Thank you for the quick reply. I’m very sorry about your wife, but am always thrilled when I hear anyone has lived longer than expected with this disease. I think the frustrating thing for my friend is that everything is so individual and unique. I understand her desire to find some answers but, as you know, a lot of it depends on her individual responses. Peace to you too!

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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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Is there a number to call to discuss treatment options and side effects and clinical trial options with someone at Mayo?

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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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cbrice, I don’t know the “current” answer, but my friend who has GBM (diagnosed 3+ years ago, and still living) refused radiation (against her ONC’s orders), and instead had surgery including implantation of a Gliadil wafer installed at the tumor site; with chemotherapy ongoing, intermittent. She is still alive at 3.5 years, and doing well despite that they could not remove the entire tumor. Her husband and she chose these options after consulting with Oncologists At Duke University to assist in making choices (she lives on East Coast); his choices were based on the GBM cells particular to her tumor subtype and her tumor location/resection . I would suggest you consult with a GBM specialist (please see Belinda’s comment above with a list, and comments but “cure” and others) at Mayo or another top GMB center, if possible. They can discuss your subtype, location, and appropriate protocols & trials options. In my friends case, accepting the Wafer and surgery did preclude her from some clinical trials, but she is still visiting Duke for scans every few months to stay close to clinical trials if needed in the future. She read a book about anti-cancer foods, and eats an organic diet primary based on vegetables (fresh, and cooked in stir fries), oatmeal, ginger, turmeric, lentils, anchovies, olive oil, organic bran muffins fresh cranberries. Gluten-free, and no preservatives, colorants, etc. She has worked with Polestar Pilates therapists to regain as much of her limb function as possible. She also avoids watching News or reading News in the news paper. Walking the hall daily and meditation are two of her other routines. I hope you will find appropriate help and guidance, and wish you (or your relative/friend) the best.

Liked by cbrice

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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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@cbrice
Welcome to connect.
I am so sorry to read about your friends diagnosis. My mother was diagnosed 3 years ago with stage 4 GBM. She was not a surgical candidate as over 100 fingers wrapped her brain and through her brain and develop tumors at the end of three of the fingers.
She chose quality over quantity he and refused them to attempt the dissection of two of the tumors she started chemo and radiation the very next day. Radiation 30 days straight and she was on a chemotherapy drug temozolomide. The treatments slowed down the progression for about 4 months before she went to her forever home.
Here is a link to the Mayo Clinic:
http://www.mayoclinic.org/diseases-conditions/glioma/home/ovc-20129412
Here is some useful (updated) information you can print out if that helps. http://www.mayoclinic.org/documents/mc2024-0409-pdf/doc-20078916

Prayers
Dawn

Liked by taterjoy, cbrice

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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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I appreciate your time!

Liked by taterjoy

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