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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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Thank you for sharing the photos I just saw them that is so helpful. I was wondering if there are any other forums that you know about and also have you come across lomustine its after 5 cycles of temodar my doctor suggests treating it with lomustine as there is recurrence. how effective it is ,side effects how you tolerate etc if someone has had it then please reply. Thank you.
We returned from our visit to Duke Hospital's Brain Tumor Center on Sunday. We are waiting with hope that Steve will be accepted into a clinical trial called D2C7 for Gr III or IV malignant gliomas. It has been going since Dec of 2014 and has had success, with people still alive and doing well five years after starting participation. They did an MRI on Fri to determine if they can safely place one to two catheters into his tumor and then infuse an immunotherapy drug over a period of four days. The drug is supposed to build up his immune system to attack and kill the cancer cells in the tumor. If he is not accepted for this treatment, I believe that lomustine is another treatment that was mentioned. Since Steve's tumor started growing again from Sept to Dec, the doctors at Duke don't recommend continuing with the optune cap. Right now we are in limbo with no treatment until we hear from Duke. We are praying he is a candidate for the trial. I will say that Avastin helped him for a good six months before becoming ineffective. Temodar did not help Steve because his tumor is not methylated. I wish you luck "youngwoman" and pray your tumor will start shrinking. If I can help with any more information, I will be happy to.
Thank you for all your wishes that is so helpful we will also try contacting them and see what happens next . Thank you once again.
Forgot to mention in my post We will pray for you that you get accepted in for the trial Best wishes and goodluck
Thank you so much. We are on pins and needles waiting for them to contact us. He has absolutely nothing fighting the growth of the tumor at present, so time is important. Hopefully, we will hear today.
Hello,
I’m new to this group as of today. My husband suffered four seizures in Halloween and they found what they deemed to be a low grade, benign tumor. Surgery was scheduled to remove it on December 17th just to be safe and once it was sent for a biopsy, we were told that it was grade 3. We just found out today that it was changed to a grade 4 and still aren’t sure why it changed and what subsequent tests have been run. He is scheduled to start Temodar and radiation Thursday, January 21st.
We are still in shock that in a period of 2.5 months all of this has happened. I would really like to get a second opinion and possibly be a part of clinical trials. Some we’ve heard from have said that since treatment is starting we should do the six month radiation and chemo and then explore that but I think we need to be more aggressive. We’ve heard Mayo, UC San Francisco and Duke mentioned - are those the best places to contact? He is IDH1 negative but MGMT positive.
We have 7 and 9 year old kids - I’ve let school know and they have been wonderful but does anyone have any suggestions on how I can help them cope with something they don’t totally understand? Thank you so much.
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1 ReactionGood luck to you @otis123. Wishing you the best! Is there a particular reason you chose Duke? Was it because of proximity to home/location? Some other centers that have been talked about are MD Anderson, Mayo and UCSF so I'm wondering what led you in particular to Duke?
On January 6, 2021, I contacted the Cleveland Clinic, Duke, the Mayo Clinic, Sloan Kettering, and Mass General. A phone call from Duke on January 7 is what led us to visit them. We live in Cortland, NY, so it certainly is not close to home. A lot of the other clinical trials I read about excluded people who had been on Avastin. After hearing details about this D2C7 trial and that folks participating are still alive and well after five years with glioblastoma is very encouraging.
Hello @mgreen616 and welcome to Mayo Clinic Connect. I am so sorry to hear of your husband's recent change in diagnosis and understand you are looking to connect with other who may be able to share information to help you navigate this next part of his care journey, as well as to find ways to share information with your young children as you go forward.
You will notice that I have moved your post into an existing conversation started by @otis123 who is also going through a similar journey with her husband. I did this so you can connect with her, another caregiver @IndianaScott as well as other members such as @begleycon who may be able to help you.
I found the following blog that may be helpful as you decide how to share with your young children:
-How to talk to your kids about cancer:
https://blog.braintumor.org/guest-blog-how-to-talk-to-your-kids-about-cancer/
Can I ask where you are at currently for his care?
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1 ReactionHi @mgreen616 I am sorry to read about your husband's medical demands. Really tough, difficult stuff for him and you all, too. I am Scott and I add my welcome to you here at Mayo Connect. My wife had brain cancer and I was her primary caregiver during her 14+ year war with it. We have two children (grown) and two young grandsons who also had to deal with seeing my wife struggle with this terrible disease.
As far as clinical trials, I suggest the site below. It is the NIH's clearinghouse on clinical trials for cancer. It can be a very tool at times.
https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials/where/clinical-center
Over the course of my wife's journey her tumor changed dramatically from time to time with no warning nor timetable. She often flummoxed even her medical team with how it changed, grew, or held off at times.
I know it will be of little comfort, but I will tell you our grandsons learned a great deal about how to interact with people with special/different needs than their own as they dealt with my wife's illness and its many permutations. They came to be quite empathetic and understanding of how disease can change, but at times not change, a loved one. Sometimes the changes were harder for our adult children to deal with than our grandsons. Odd I know, but in some cases young may be a benefit is what we saw.
I also remember times of change were the most challenging so I hope you get some time of stability.
Strength, courage, and peace
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