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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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Your wife sounds like she is doing well. I have same diagnosis and pathology. I had surgery January 26 and started radiation and chemotherapy February 20. My understanding is they want brain swelling to go down and to ensure scar to fully heal before starting treatment.
I had some nausea, fatigue and lack of appetite from radiation and chemo.
I had to discontinue some supplements because they interact with Temador. If you are interested in alternative treatments I recommend you consult with an integrative oncologist. I’m not sure if your wife is a Mayo patient but there is only one integrative oncologist at Mayo and I have found her very helpful with recommendations for diet, supplements, etc. She recommended 2 books I found very helpful that have information on supplements: Radical Remission and Radical Hope by Dr. Kelly Turner.
There is also a monthly virtual Brain Tumor Support Group you and your wife might really enjoy. It is facilitated by Mayo Staff and typically Dr. Joon Uhm, Mayo Oncologist, attends. Very informative and supportive group.
If I did not do my own research and work together with my husband's medical professionals, asking questions and making suggestions, I truly believe he would not have lived 10 months beyond the standard life expectancy. Please read through my story to understand our journey. To have a doctor tell you to stay off the internet is ludicrous. Kathie from Otis123
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2 ReactionsI am interested in the brain tumor support group that you mention - we attend one facilitated by a Mayo social worker but have not heard of this one.
The August Meeting is next Saturday 10:00-12:00. They typically send zoom link on Friday. I’ll try to remember to post. Here is contact information:
Brains Together
PO Box 8353
Rochester, MN 55903
http://brainstogetherforacure.org
Thank you for your reply and posting for the brain support group zoom meeting. We are not treating at Mayo. We are in the Kansas City area using KU Medical. Thus far after only 3 radiations and chemos she has not encountered any adverse affects. Only a small sample but encouraging. Prayers to you and your family.
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1 ReactionI read your story and it was helpful. Thank you. I hope you and your family are doing well Kathie.
I was happy to hear about how successful your fight with GBM has been. May I ask if he is still doing well? I just found this group. My husband died last year from GBM. He died 107 days after he was diagnosed. He did surgery but they didn’t remove the two tumors because they said it would just grow back. He did some brain radiation which just killed him quicker IMO. He did the oral chemo too but nothing helped. We were never told of any other methods of treatment here in Chicago.
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3 ReactionsI am so sorry to read about your husband’s passing. I lost mine last year. I have struggled ever since. We were together for 25 years and I miss him terribly. I don’t know how people cope with such a great loss. I struggle everyday and it hasn’t gotten any better for me.
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4 ReactionsI am doing okay thanks to lots of friends and family. Keeping busy is the key. I miss Steve "Otis" like crazy but am grateful for the extra 10 months we had. I feel for all of you in the fight to keep your loved ones alive. Stay positive, pray, do your research, and in the midst of everything caregiving entails, please remember to make the most of the good days....talk, laugh, visit, reminisce and, if possible, make some new memories. Sending love and hugs to all of you as well as hope that your loved ones will be the miracles who live on for years and years. Kathie
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5 ReactionsBrains Together Support Group
Saturday Aug 19
10:00-12:00 Central
Zoom
Meeting ID: 874 6178 5274
Passcode: 212795
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