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My Husband's journey with Glioblastoma
I have been following discussions in this Brain Tumor group for several months and decided it was time to share my husband, Steve's, journey with a GBM diagnosis. On 10/25/2019, after one short week of headaches and some confusion....thinking Tuesday was Friday, starting to take the wrong exit off the highway....I asked him to see a doctor. On Friday, 10/25, he went to the ER where they did a cat scan and found a mass in his brain. An MRI confirmed a right frontal lobe mass. Surgery was performed on 10/28/2019 after which we learned he had Glioblastoma (WHO Grade IV), IDH1-Wildtype with MGMT promoter methylation absent. The surgeon said he had removed the entire tumor, which luckily did not affect any functional areas of the brain. He underwent six weeks of radiation M-F, along with daily Temozolomide chemo pills. He had no adverse reactions to either. Unfortunately, an MRI on 01/24/2020 showed a recurrence. We were told that because his tumor was not methylated, the temozolomide often does not have success. So Steve underwent another surgery on 2/13/2020, where once again the entire tumor was removed. The plan was to start maintenance chemo pills...but still temozolomide. However, swelling in the brain took Steve back to the ER where it was determined he was taken off steroids too quickly. To our shock, an MRI taken on 03/08/2020 showed the tumor had returned yet again!!! We said "no more surgery" as it obviously keeps coming back. It was decided to try the Optune Cap through Novocure and receive every other week treatments of Avastin, a chemo drip. I also heard about a book called "Radical Remission"...How to Beat Cancer Against All Odds, written by Kelly Turner. The best chapter in the book is the one on diet. I learned that "sugar feeds cancer". My shopping now has me reading labels. The book says to avoid anything with added sugars. Don't eat fast food, or processed meats. I buy everything I can find with low sodium or no salt added. We eat lots of fruits and vegetables and only sprouted grain bread. The book also recommended drinking Essiac Tea, which is made of eight organic herbs that are pesticide and chemical free. Check the website http://www.discount-essiac-tea.com to read the multiple testimonials from individuals with cancer. Steve has had MRI's on 06/01/2020 and 09/18/2020 each showing a continual decrease in the tumor size. On 03/08/2020 it measured 5.8 cm x 4.7 cm. On 09/18/2020 it measured 2.3 cm x 1.6 cm. He continues to wear the Optune Cap more than 85% of the time, plus the Avastin, the Essiac Tea, and the diet and lots of prayers from family and friends. We aren't sure exactly what is working so aren't willing to stop anything. We remain cautiously optimistic.
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The Keytruda was postponed since he was having so much trouble with this round of radiation. He finished the last radiation treatment today. He has improved a lot but still not 100% in his memory and his unsteadiness. At least he is back to walking around the house alone. So now as he keeps reducing the amount of Dexamethasone he is taking, I am hoping they can start the Keytruda this Wednesday. I guess the two drugs work opposite each other with the immune system, so it had to be postponed. He also had a very high protein count in his urine, so his Avastin was canceled last week also. I am pushing him to drink lots of water and hopeful that this Wednesday, 2/17/21, he will be able to get the Avastin infusion and maybe even start Keytruda.
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1 Reaction@otis123, what a relief that Keytruda was approved at this time. I know it's only been a few days, but how is your husband tolerating it? Has the nausea and unsteadiness subsided since you last wrote?
@mgreen616, how are you and your husband doing? What are the next steps for him?
A second round of radiation started last Tuesday, but today we find ourselves back seeing a doctor before his treatment. He is nauseous and unsteady on his feet and his speech a little garbled. Doctor says his brain is swelling because the radiation site has already had 6 weeks of it previously plus two surgeries. They put him back on 4 mg of Dexamethasone 2x day for 7 days to reduce the swelling. I sure hope it works. His last radiation treatment will be one week from yesterday. I got word that the Keytruda has been approved, so that will start tomorrow along with his Avastin. I sure hope he can tolerate it all.
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1 ReactionI appreciate all of the information and thank you for sharing it. We head to Syracuse this morning for his first re-radiation treatment. He will have 10 total. We are still waiting for the Keytruda to get here. I will look into all of the treatments you mentioned. Steve's tumor is not methylated, which makes it a little more difficult to treat, unfortunately. Glad to hear your Dad made a full mental recovery. GBM is certainly scary stuff!
Thank you for your message and suggestions! I really appreciate the references you suggest checking out. I definitely will research all of them. Otie is still drinking Essiac Tea, and I am diffusing Frankincense for 2 to 3 hours a day, which has the ingredient boswellia. You may be right about Optune, but the the cost of it is very high, and insurance companies argue paying when you are taking other drugs like Keytruda w/Avastin. It's a scary road for sure, especially when he is 15 months since diagnosis...feeling fine, but we know the cancer is growing and need to find something to, again, stop it in its tracks, even if for awhile. We are hopeful, and in the meantime, I will continue to research. You have been very helpful!!
I was unsure and confused after trying to research information on keytruda and lomustine yesterday. Steve's (nickname Otie) oncologist called me at 7 p.m. yesterday and we talked on speaker and made a decision. He is definitely going to stop using the optune cap, since the tumor grew while he was wearing it. He will restart Avastin (Bevacizumab) an infusion every other week and begin Keytruda, a chemo pill. He will also have about 10 more radiation treatments. I was concerned the keytruda would not work because of his two prior surgeries, but the doctor said that there is new growth and he is not having a 3rd surgery so it should work. I had read that keytruda awakens and attacks dormant cells.....cells that would be lost if a new surgery is performed. Hey... we have to trust the decision and continue to pray this stops the growth and decreases the tumor for awhile. May all of us have some good luck in 2021 !!!
I'm sure you read the details of my husband's journey with Glioblastoma, starting with his first surgery 10/28/2019. His second surgery was 2/13/2020 after six months of temodar and radiation treatments, which everyone says is standard treatment. He wore the optune cap and had every other week infusions of Avastin (Bevacizumab) from mid-March through December 2020. His June and Sept. MRI's showed a decrease in his tumor, but the Dec MRI showed it has started growing again. That is what took us to Duke. The folks at Upstate in Syracuse have been wonderful so far, and I am asking our Oncologist to help with determining what is best for the next step---Lomustine or Keytruda. I am trying to read as much as I can to educate myself on the clinical trial results of each to help figure out which to do. It's hard. I wish you all the luck with your current treatment. I will let you know what we decide. Let's stay in touch!!
I was diagnosed with a Glioblastom in July 2020 and the tumor was removed at Mass General by William Curry. We did MRI every other month using Abemaciclib. My wife says that the study close now. Then a second smaller
tumor was found this past December by Mass General and we started see if i were eligible for infusion therapy- I was. I started last month.
Dr Curry removed the second tumor last week and I’m on the mend. I can’t say enough for the care I am receiving at the Mass Gen. We live two hours away from Boston so it’s that not fun but given now I have to to an ifusion every 3 weeks it’s nice to not have to fly in to appointment. Begin close to treatment is as plus and long as it’s a good hospital with access to the latest trials. We started off at a local hospital who said they could it the Friedman say don’t go - go to Mass General.
FYI - Dr. Friedman was that one that recommended Dr. William Curry at Mass General to us
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1 ReactionI know I am bombarding you with questions, but I have a few more. How long have you been on Keytruda? Have you had any MRI's since you started? If so, did they show a decrease in your tumor size? Upstate University Hospital in Syracuse, NY, had suggested Keytruda as the next step before I headed to NC for a consult. I have written to Otie's Oncologist with the details you gave me to see if she was going to use the exact same thing. Thank you so much for talking with me. You are very helpful!! Don't go away!!
KEYTRUDA® (pembrolizumab) - Official Product Site
That is was I am on at Mass Gen. Dana Farber’s Doctor is running the protocol which MG with part of.