Questions about glioblastoma resection, radiation afterward

I am enrolled in and the final entrant at Mayo, Rochester, Oncologic Measles Virus in GBM, phase I clinical trial. I think I am #25 of 25.
I just reviewed the recent GBM national meeting report. There are studies in California, MD Anderson, SloneKettering and others. Sorry for spell errors.
And, there are Canadian studies and European.
From what I gather, the national GBM attack plan is to open as many studies of ALL phases to all GBM patients. We just need to figure out how to enter the system and identify a patient advocate to navigate the options. I personally would be interested in holding this position, but do not know where to start in the network and get started applying for the position.

Belinda (Dr. Uhall, MD)

Thank @cure!
Here are the details of the study that @cure was involved in
HSPPC-96 Vaccine With Temozolomide in Patients With Newly Diagnosed GBM (HeatShock) https://clinicaltrials.gov/ct2/show/NCT00905060
This phase II study closed in 2014 and the data is being analyzed.

I like this explanation from NCI Trials.gov on how to read a study record https://clinicaltrials.gov/ct2/help/how-read-study

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

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

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

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.

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!

Jeffrey Bruce,MD

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

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!