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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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I wanted to tell you that the doctors never gave us a time frame on how long he had to live. I knew it wouldn't be too long though since I had noticed for many months that he was having issues. I just never realized why he was having those issues. If you want to talk or have other questions, message me here in the discussion or send a private message. When my husband was dying, I tried multiple times to find people to talk to who were going through the same thing. I never did find anyone. It turned out to be a very lonely journey for me. The hardest part for me now is the loneliness too. We did everything together for 25 years and then he was just gone. It is quite a struggle. I wish you the best.
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6 ReactionsMy husband was 76. He had two tumors. They did the surgery to remove them but once they saw it was GBM they didn’t remove any of the tumors because they said they just grow back. They said radiation and chemo would be the only thing that we could try. Radiation just killed him quicker IMO.
The doctors won't/ or can't comment on whether this was caught early. The surgeon said he took out virtually all of the tumor he could see. As we look back on some of the minor symptoms she had prior to diagnosis, we surmise this may have been going on at least six months prior to diagnosis in June this year. Very sorry to hear about your husband. How old was he if I may ask? Take care of yourself.
Do the doctors think they caught it in an early stage? My husband was diagnosed April 1 last year and did the chemo and radiation after surgery. They didn't bother to remove the tumors since they just grow back. He could walk maybe 100 feet after the surgery with a lot of therapy but it was struggle. Once the radiation started that just made him get worse quicker. I hope your wife keeps having good results with her treatments. Sadly my husband passed away July 17. I wish you the best.
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2 ReactionsMy wife completed the 15th and mid point of radiation today. Temodar for chemo also at the mid point of regimen for her GBM on her left frontal lobe. (surgery was done on July 6) Her tolerance for these treatments was excellent until last week. She began getting more tired and even though her white blood cell and platelet counts are on the low side, they are not significantly below normal range. She has been in a vicious cycle trying to regulate her bowels, evidently a result of the chemo. However, she has not had any nausea. She takes an anti nausea pill each day before chemo pills. Also, last week she began losing her hair in clumps. Finally, her sleep habits have been altered to the point she only gets a decent sleep every third night. On the positive side she is still able to walk 2 to 3 miles nearly each day. Her attitude is positive and she has no other side affects such as headaches. She was having a tremor in her right arm several times per day since surgery, however five days ago those stopped. So I guess another positive sign. Prayers to all those going thru this wicked fight.
Dan
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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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1 ReactionI 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 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 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 read your story and it was helpful. Thank you. I hope you and your family are doing well Kathie.