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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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No problem, you're welcome @otis123 @amandajro . And I can certainly agree with the point about Optune. In fact, my dad just recently started Optune due to delays with insurance negotiation.
And yeah, I can share a bit more. My dad was completely asymptomatic until he had a seizure around 1 am one night 5 months ago. Fortunately, we noticed pretty quickly and were able to get him into emergency care soon after. He then went through the standard surgery, TMZ, and radiation treatments and is now on the monthly TMZ cycles. We haven't gotten him into any clinical trials yet as we weren't quick enough the catch the window for newly diagnosed and have yet to qualify for recurrent. Fortunately, he's MGMT methylated so the TMZ may be working, at least for now. We also recently started him on Optune and have slowly built up to the regimen of supplements I mentioned in the last post (but constantly looking for more to add).
Before surgery I worried my dad may never be the same mentally, but he made a full recovery. Then after the diagnosis I thought his chances were hopeless, but the more I research the more hopeful I am. It seems there are so many experimental treatments with promise, and I really now believe with the right findings and risks long term survival may be a real possibility. Of course I don't know, but if it's out there I will find it!
I mentioned supplements in the last post, but there are good clinical trials showing survival benefit in GBM too. Most if not all of these are probably not in area/inaccessable to any one person, but probably at least worth mentioning just in case. DCVax-L, SurvaxM, Dendretic Cell Vaccine Targeting CMV, Wilms Tumor 1 Vaccine, CUSP9 protocol, COC protocol, Mebendazole, Anlotinib (FGFR inhibitor), Paxalisib (PI3K inhibitor), namely. Keytruda, as you guys were looking at seems promising as well for patients pre-surgery (or assumedly without surgery) as it seems to need the tumor present at the time of treatment to have an effect.
I don't mean to overwhelm with information but there seems to be reason to hope and believe that action can make a difference. Again, I wish you all the best.
I 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!
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 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?
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 ReactionWell, Steve had his Avastin treatment on 2/17/21 and his very first Keytruda infusion yesterday, 2/24/21. So far no side effects, and we certainly hope it stays that way!
I have not posted in a long time. I feel my life has been turned upside down this past year. My oldest sister passed away in
April. My daughter. who we had so much hope for passed away October 12th. Her tumor had grown into her heart and when they tried to remove it, her heart started to bleed so they closed her up. They went back a few days later and tried to insert a stent so that she would be able to breathe easier. Surgery went well but she passed when they were done. She took a piece of me with her and now we received more bad news for my husband. He has high grade glioma and a new tumor. The doctors have only given him about 3 months.
He was in the hospital about 2 weeks ago for a severe rectal bleed. He lost half the blood in his body and now he cannot go on chemo because his hemoglobin is too low. I cannot vision a life without him after being married for almost 56 years.
Praying for peace and comfort for you and your husband.
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1 Reaction@rosez, I send you a gentle embrace. Is your husband getting palliative care? Have you considered hospice care? Let me know if you want more information about these options.
I am so sorry for all you’re going through. I am praying for you and your family. ❤️