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tracyknabel
@tracyknabel

Posts: 1
Joined: Oct 02, 2016

Glioblastoma Resection

Posted by @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

REPLY

@tracyknabel Hello and I am so very sorry you both have to go down this extremely difficult journey.

http://www.mayo.edu/research/clinical-trials/cls-20116731
Here is some interesting information that might help you with these questions. Sadly they say Radiation is not the cure for GBM but it does slow the regrowth process.

Praying for you & family
Dawn

I add my welcome Tracy. I'm glad you connected with Dawn already. I'm also going to tag fellow members @cure @sandydominy1 @barbkaser @martyc2016 @js119 @ljsandlin and @adri are all caring for a family member who has glioblastoma. They may be able to provide further insight to your questions about radiation and surgery according to their experiences.

Tracy, can you please clarify something from your first post? The oncologist is recommending surgery and the surgeon recommends radiation first, but you have to wait several months before a second round of radiation can be given? Are the neuro-oncologist and neurosurgeon at the same care facility?

Get second opinion.

@colleenyoung

I add my welcome Tracy. I'm glad you connected with Dawn already. I'm also going to tag fellow members @cure @sandydominy1 @barbkaser @martyc2016 @js119 @ljsandlin and @adri are all caring for a family member who has glioblastoma. They may be able to provide further insight to your questions about radiation and surgery according to their experiences.

Tracy, can you please clarify something from your first post? The oncologist is recommending surgery and the surgeon recommends radiation first, but you have to wait several months before a second round of radiation can be given? Are the neuro-oncologist and neurosurgeon at the same care facility?

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The typical treatment is surgery, then chemo and radiation together.

Hello,

My name is Belinda. I am 57 years old, a 30-year physician, who was diagnosed with a grade IV GBM last May 2015 after experiencing a grand mal seizure. I had the resection, radiation/boost and oral chemo. I have done well.
As a physician, I did have an edge-up, but put myself to task and contacted as many clinical study and GBM specialists as possible. Short term memory issues interfere somewhat, but I take lots of notes. A second or more opinions are a good idea. It is essential that you develop a team within a facility or town so that communication is smooth and timely. I became an Oncolytic Measles study patient at Mayo Clinic Rochester as of June 2016. This took me from my home in Tucson, but the satisfaction of team coordination has been an essential part of my survival. I had an oncology/Rad/Onc team in Tucson for breast cancer in 2014. I happened to personally know my team as colleagues for several years, but still find I need to prod them to work together at times. What a trip.
It is frustrating to see time pass to quickly, so you need to get going. If your team at Mayo feels unified and you both are feeling safe and informed, stay put and ask the team leader who they might recommend for another opinion. Duke and Cleveland Hospital have GBM specialists. A couple California medical schools also have GBM specialists. Online is reasonable to search, carefully. The GBM specialists around the world know of each other. There are GBM facilities in Europe as well. Each have their own studies, ideas and personalities. DO NOT BE AFRAID TO CALL THE DOCTORS, BECAUSE YOU KNOW MORE NOW THAN MOST PRIMARY CARE DOCTORS WILL EVER KNOW ABOUT GBM. YOU HAVE SPECIFIC QUESTIONS FOR THEM. I WOULD BE HAPPY TO ASSIST IF YOU NEED.
Currently, I am in Tucson, Az and follow up in the Scottsdale Mayo Clinic Cancer center. I recently added Avastin to my chemo, but I am 17 months survival, have a normal exam and a tolerable medication list. I actually inquired to Mayo as to a possible job as a patient and/or physician advocate to help with exactly your issues.

Belinda

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?

Liked by taterjoy

@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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I’m encouraged that there is hope
if our GBM returns. We all know it will. We are putting our hopes in Duke Clinical Trials.

Liked by taterjoy

I’m hoping this polio study at Duke site will be one of the final ones that any us will need.
To me, I think a fair amount of refining will be necessary for all these designer anti cancer immune therapies to actually benefit patients. I’m praying for more life time for me so this can be done for my benefit. I do not mind being a study mouse, because the risk of the research is no worse than the known outcome, death. These therapies are very complex despite the fact we can sit with colored pencils and draw like a cartoon what we THINK is happening. The genetic mapping of GBMs is amazingly complex. It is being done by tumor banks that actually grow the cells. They are sorted and catalogued for study with different chemotherapy drugs and immmune therapy. Ask your team to be sure your husband’s tumor has this completed. They then try to match the most effective chemo meds and, some day, match anticancer immune therapy to that specific tumor. The possibility of GBM cure lies on one or both of these study paths. I have not spoken with a tumor bank. They are in the US and Europe, as far as I have seen.
It might be worth travel to one of these sites for more information. The clinical study coordinator Sue Steimetz in Rochester or the GBM DOCTORS should know a lot more to advise you.
Certainly, comfort care and quality of life are primary. We have a terminal cancer. Spending time with family and cultivating his and your faith must be started now. The proverbial “bucket list” needs either begun or considered not necessary. Personally, spending time with my mother and 2 adult daughters are my only needs. I don’t have a bucket list. Church and faith are my greatest help in bearing this burden. In times of despair and distress, I reach for my pastor and my 78 year old mother. We are enduring. I am truly blessed to be happy and be fairly independent. I pray for all of those with thi devastating cancer.

Belinda

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?

Liked by taterjoy

HSPPC-96 at Columbia.

Liked by taterjoy

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)

@cure

HSPPC-96 at Columbia.

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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

Liked by taterjoy

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

Liked by taterjoy

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

Liked by taterjoy, cbrice

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

Liked by taterjoy

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