Radiation with or without Temodar for Glioblastoma?

Posted by daughterfutureMD @daughterfuturemd, Sun, May 10 6:50pm

Hi Folks,
I am a 3rd year medical student & the daughter of a father recently diagnosed with Glioblastoma. He has also been battling leukemia (Chronic Lymphocytic Leukemia – CLL) for the past 13 years. Here's a quick summary of events so far leading up to my question:

April 7, 2020 – Visit to the local emergency department given symptoms of high BP (170/90s), nausea, headache, fatigue & what appeared to be incoordination. Worried it was a stroke or brain bleed given a fall the previous night so urged dad to go to ED. All reports (EKG, BP, etc.) were clear but MRI showed incidental finding of a contrast-enhancing brain tumor in the RIGHT parieto-occipital region (~2.1 cm in size) and an area (~3 cm) of signal irregularity in the RIGHT frontal gyrus (no contrast enhancement evident) along with some edema/inflammation around both sites.

April 7 – April 9, 2020 – observed overnight at the hospital for 2 nights – placed on steroids (Dexamethasone) and anti-seizure med (Keppra). Decision to pursue surgery to remove mass & biopsy to figure out what it is. **However**, the leukemia medication he is on called Ibrutinib acts as a blood-thinner so surgery was postponed for 14 days while holding that medication.

April 23, 2020 – underwent craniotomy to remove RIGHT parieto-occipital mass

Today (May 10, 2020) – recovering 2 weeks post surgery. Experiencing fatigue, intermittent indigestion/nausea/constipation issues, and headache. Has been tapered off the steroid (Dexamethasone) & has not taken any for the past week. Continuing anti-seizure med (Keppra) and his usual meds for CLL, fenofibrate, vitamins, etc.

We consulted with neuro-oncology & radiation oncology this past week – got the initial radiation simulation/MRI planning done. They suggested proceeding with radiation treatment (traditional radiation – NOT proton therapy) for both areas on the brain (the area where the RIGHT partieto-occipital tumor was removed from & the stable area on the RIGHT frontal lobe). However, given the COVID19 situation & the fact that he is already immunocompromised given the CLL & the drug he is on for that (Ibrutinib), neuro-onc suggested 6 weeks of radiation WITHOUT temodar. With the plan of perhaps doing Temodar later post radiation. What are your thoughts on this for those of you who have had radiation +/- Temodar? How effective is the radiation vs. Temodar? Does not giving him Temodar concurrently with the radiation serve as a disadvantage in terms of outcomes?

Welcome to Mayo Clinic Connect, @daughterfuturemd. You are asking some great questions. Allow me to tag fellow members @mepowers @eileen61 @kodabear @megxoxo @michaeljh and @barbaraak, who have experience with Temodar and radiation.

You may also be interested in watching this Video Q&A with Dr. Bernard Bendok, neurosurgeon, and Dr. Sujay Vora, radiation oncologist, at Mayo Clinic.
#MayoClinicNeuroChat on Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-brain-tumors/

Are you able to ask these same questions to your father's doctors?

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@daughterfuturemd, I don’t think I can be helpful. I never had radiation. I was on an infused Chemo along with the oral chemo Temodar. It was a 28 day cycle with the infused on day one and the oral on day 8, repeat again on day 14. It was grueling. I will say my schedule got messed up due to the insurance company not approving Temodar in a timely fashion making me miss my first time. I have been in remission for a little over three years, so I can’t say if missing Temador was detrimental. I wish your father well and know he’s lucky to have great support from his future MD daughter.

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My situation was a little different… inoperable left parietal AA3 diagnosed in August 2019. Thirty treatments of proton beam radiation along with 42 does of Temodar. I was told the radiation and chemo was more effective together. After one month, I went on the standard of care of 5 nights of Temodar at a larger dose per month. I am actually beginning the 6 month tomorrow. I have been downgraded from AA3 to molecular GBM. Been suffering from large amounts of swelling and a lot of problems with language, which was the initial symptom one year ago. On top of this, I came down with bilateral pulmonary embolism and dvt, so I'm on lovenox injections for three months. Add on the dexamethasone and I'm a walking blue and black bruise.
Not this helps your question, but always keep asking questions until you are satisfied. Best of luck!

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@colleenyoung

Welcome to Mayo Clinic Connect, @daughterfuturemd. You are asking some great questions. Allow me to tag fellow members @mepowers @eileen61 @kodabear @megxoxo @michaeljh and @barbaraak, who have experience with Temodar and radiation.

You may also be interested in watching this Video Q&A with Dr. Bernard Bendok, neurosurgeon, and Dr. Sujay Vora, radiation oncologist, at Mayo Clinic.
#MayoClinicNeuroChat on Brain Tumors https://connect.mayoclinic.org/webinar/mayoclinicneurochat-on-brain-tumors/

Are you able to ask these same questions to your father's doctors?

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Thanks Colleen for your response & resources. I will definitely check out the video. We have a video follow-up with his neuro-oncologist this afternoon prior to starting the radiation tx later this week on Wed, so I will certainly ask these questions then.

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@mepowers

@daughterfuturemd, I don’t think I can be helpful. I never had radiation. I was on an infused Chemo along with the oral chemo Temodar. It was a 28 day cycle with the infused on day one and the oral on day 8, repeat again on day 14. It was grueling. I will say my schedule got messed up due to the insurance company not approving Temodar in a timely fashion making me miss my first time. I have been in remission for a little over three years, so I can’t say if missing Temador was detrimental. I wish your father well and know he’s lucky to have great support from his future MD daughter.

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Thank you for your well wishes, @mepowers. I am so happy to hear about your continued remission & wish you the best. Yeah even with GBM patients, I have heard some do not get radiation & instead pursue chemo options such as intra-arterial chemo regimens/pill per day regimens of chemo so I'll be sure to ask his neuro-oncologist all these questions today.

I am curious to hear how they diagnosed your CNS Lymphoma – were the doctors sure it was CNS Lymphoma primarily based on initial MRI scans or was a biopsy/craniotomy required to get tissue samples? We really thought that my dad's lesions could be CNS Lymphoma given his hx of Chronic Lymphocytic Leukemia (CLL), the response/shrinkage in his contrast enhancing lesion after a week of Dexamethasone (prior to surgery), and especially since gliomas and CNS Lymphomas look similar on imaging in immunocompromised patients. However, the path report indicates otherwise – it indicates GBM.

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@eileen61

My situation was a little different… inoperable left parietal AA3 diagnosed in August 2019. Thirty treatments of proton beam radiation along with 42 does of Temodar. I was told the radiation and chemo was more effective together. After one month, I went on the standard of care of 5 nights of Temodar at a larger dose per month. I am actually beginning the 6 month tomorrow. I have been downgraded from AA3 to molecular GBM. Been suffering from large amounts of swelling and a lot of problems with language, which was the initial symptom one year ago. On top of this, I came down with bilateral pulmonary embolism and dvt, so I'm on lovenox injections for three months. Add on the dexamethasone and I'm a walking blue and black bruise.
Not this helps your question, but always keep asking questions until you are satisfied. Best of luck!

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Hi @eileen61, thank you for your insight. I'm sorry to hear you're going through a bit of a rough patch with all the swelling, language problems, and the DVT/embolisms on top of all that. The dexamethasone is quite a heavy drug, but I wish you the best today & always. As someone once told me, "this too shall pass." And every since April 7 (when I first heard the new of my dad's tumor), that has been my daily motto. It seems like there are good days & bad days, and every day brings with it new challenges & new joys so I've been taking it a day at a time.

I'm curious to know why you & your providers chose to pursue proton beam radiation vs. general X-ray radiation? Also, did your provider discuss your molecular analysis of the GBM (i.e. IDH wild-type vs. mutated, MGMT methylation, etc.) when deciding on using Temodar? According to my dad's neuro-oncologist, given that he is NOT MGMT methylated and the COVID19 risk/crisis, he does not think giving Temodar during radiation is a good idea since the possibility of harm (i.e. COVID infection) >>> outweighs the benefit.

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@daughterfuturemd

Thank you for your well wishes, @mepowers. I am so happy to hear about your continued remission & wish you the best. Yeah even with GBM patients, I have heard some do not get radiation & instead pursue chemo options such as intra-arterial chemo regimens/pill per day regimens of chemo so I'll be sure to ask his neuro-oncologist all these questions today.

I am curious to hear how they diagnosed your CNS Lymphoma – were the doctors sure it was CNS Lymphoma primarily based on initial MRI scans or was a biopsy/craniotomy required to get tissue samples? We really thought that my dad's lesions could be CNS Lymphoma given his hx of Chronic Lymphocytic Leukemia (CLL), the response/shrinkage in his contrast enhancing lesion after a week of Dexamethasone (prior to surgery), and especially since gliomas and CNS Lymphomas look similar on imaging in immunocompromised patients. However, the path report indicates otherwise – it indicates GBM.

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My diagnosis was difficult until I hit Mayo. I live in Albuquerque. My primary care sent me to every specialist except an oncologist. Everyone of them said that something was wrong but it wasn’t in their silo. My primary got me into Mayo Clinic. Again, my nasty insurance company was denying my ability to see a Neurologist. I saw a wonderful endocrinologist at the clinic. She said my life was in jeopardy and admitted me to Mayo Hospital. She said once admitted, my insurance company couldn’t deny anything. Within 48 hours the doctors at Mayo diagnosed me. I had many tests. They were on to something when they did the MRI with contrast. My brain had swollen over the hemisphere. Ultimately, I had a brain biopsy to confirm diagnosis. I spent over 3 weeks at the Mayo hospital in Phoenix. I had one infused Chemo and two biologic treatments there. They set up my protocols and found a hemo-oncologist to treat me in my home state. In 2016, I spent over 70 days in hospitals. I can’t tell you how great they are at Mayo. That was way more than you asked…the short answer is brain biopsy! :). My current oncologist says she loves this protocol and thinks the Temodar was a great added to high dose Methotrexate.

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@daughterfuturemd any updates since your dad's last appointment? How's he doing?

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@mepowers

My diagnosis was difficult until I hit Mayo. I live in Albuquerque. My primary care sent me to every specialist except an oncologist. Everyone of them said that something was wrong but it wasn’t in their silo. My primary got me into Mayo Clinic. Again, my nasty insurance company was denying my ability to see a Neurologist. I saw a wonderful endocrinologist at the clinic. She said my life was in jeopardy and admitted me to Mayo Hospital. She said once admitted, my insurance company couldn’t deny anything. Within 48 hours the doctors at Mayo diagnosed me. I had many tests. They were on to something when they did the MRI with contrast. My brain had swollen over the hemisphere. Ultimately, I had a brain biopsy to confirm diagnosis. I spent over 3 weeks at the Mayo hospital in Phoenix. I had one infused Chemo and two biologic treatments there. They set up my protocols and found a hemo-oncologist to treat me in my home state. In 2016, I spent over 70 days in hospitals. I can’t tell you how great they are at Mayo. That was way more than you asked…the short answer is brain biopsy! :). My current oncologist says she loves this protocol and thinks the Temodar was a great added to high dose Methotrexate.

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@mepowers Thanks for your response. I appreciate the insight. Given my dad's history of CLL, there was high suspicion for a high grade glioma vs. CNS Lymphoma since high grade gliomas and CNS lymphomas in immunocompromised individuals looks very similar on imaging. And with him already being a leukemia (CLL) patient, I was convinced that lymphoma was a greater possibility than GBM. On top of that, there was significant swelling around his tumor, so he was placed on high dose steroids (dexamethasone) prior to surgery and those steroids not only seemed to help with the surrounding swelling but they also shrunk the contrast-enhancing region of the tumor quite a bit so it was just appalling when the pathology post tumor resection showed evidence of GBM instead of CNS Lymphoma. But I guess it is what it is… Now we know what it is and are working with the staff at Mayo to get him the best treatment possible. I agree with you – the staff/care team at Mayo is truly incredible. We are all thankful & blessed to be able to access them despite these crazy times around us.

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@colleenyoung

@daughterfuturemd any updates since your dad's last appointment? How's he doing?

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@colleenyoung Thanks for checking in. Sorry I have been slow to respond – got busy with board exams. Dad is doing okay. He is undergoing radiation treatment at the moment and still has some weeks to go with that. We will be meeting with his neuro-oncologist midway through radiation treatment to figure out the next steps post radiation since he is NOT on temodar and is just doing radiation given the risk of COVID.

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