Srijana, Suanne here. Going on 14 months since my last TMZ (Chemo) treatment and I am getting stronger every day. I had 14 additional months of Temazolomide on top of the resection and radiation and yes, cumulatively, it all takes it's toll on you.... Very tiring BUT, you must nourish your body, exercise daily (and I know how impossible it seems when you are unwell, I was paralyzed on my left side and was not terribly energetic) get plenty of sleep, laugh as often as you can, envision the outcome you want, surround yourself with only positivity, the rest is not helpful. The supplements I used were simple, 2tblsp of flax seed oil oxygenated (whipped) in 1/4 cup of cottage cheese, 2xday, organic fish oil 2xday, green tea and alkaline water, plenty of it... 10 -12 glasses per day -lots of green veg (Spinach, Kale,) Leeks, Fish, Berries, absolutely NO refined flour or Sugar. I'm not completely out of the woods yet BUT, I feel good and have had no sign of recurrence. For the record, I NEVER believed the prognosis (18-24 months)...how could I? I had my surgery on Nov 11/2011, it's June 2014....and I EXPECT to be updating this column again in 2016 and thereafter. Now, there may come a time when I will go BUT, I will be whole again before I do. Love & Light to all, Suanne
Dear Suanne, I have read your posts and my husband also has gliosarcoma. He just finished his 6 weeks of radiation and temodar and now has 2 weeks off before going on the 5/23 temodar. He is a very active man, 55 yrs old, and this hit us like a ton of bricks. Right now he is experiencing weakness in his legs and numbness in his hands and feet. He doesn't let the weakness slow him down. I am starving for information on GSA and there is so little to find out there. how did you come up with the supplements that you take. I read Ben Williams book and the anti cancer book and have been writing Ben via email and he has given me a list of his supplements. He has survived 20 years of GBM. You are the only person that i have found that has survived over 2 years and I would love to find out anything I can from you.
so glad that you have found the way to survive. Thank you so much!
Pat
Hi Suanne.. I feel so happy to read your post. May all good health be yours. My mom has been diagnosed with the same about 2 months back. She is now going thru her CCRT, last 10 days left. She feels very negative, does not eat well, not willing to try any new alternative medicine also. I feel sorry for her... She is no more the active, talkative person she used to be.
Hi can you please contact me my mother was just diagnosed with gliosarcoma
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Suanne, I am so happy to read your posts. My husband was dx in October 2012, and underwent surgery on November 14. The surgeon in discussing the first MRI told us that he felt 99% certain it was benign. With that assurance, we agreed to surgery with no second opinion. After 6 hours in OR, and working with a microscope, the surgeon came to the waiting room and told me he was sorry but itwas not as he had thought and shattered my world. He did say he "got it all" but it would certainly come back with a vengence! He gave him 6 months without chemo and radiation and possibly as long as 15 months with, but no more! He just had his 70 birthday on Dec. 10. Until this surgery, he had never stayed overnight in a hospital, never been sick, went for bi-annual check ups with our GP, where his vitals, blood pressure, cholestrol, heart, was amazing and was told he was healthier than most 30 year olds.He was a hard worker and provider, rising each day at 5:00 a.m. to start his day or go to work. We are raising and have legal custody of our sweet 5 year old grand daughter who is the joy of our lives.
He has spent 6 weeks in rehab due to weakness and inability to bounce back. The shock of the dx may be largely responsible. A friend told us about the Budwig diet that I implemented for two weeks before surgery. It has been difficult to carry through with him being in rehab. I try to take the cottage cheese and to to him there, but he doesn't finish it as before surgery. He has progressed to the point that they plan to discharge him for home on January 6th. with a home health agency to assist me. To date, he has not agreed to treatment due to his weak state, fearing he can't tolerate treatment. This is the decision we will have to make now. He wants to live as long as possible for me and our little girl who loves her Papa to the moon and back. He doesn't want to live with daily sickness with no quality of life, that she will have to witness in our home. I was encouraged by your post, and plan to read it to him to encourage him and give him hope. Hope is vital, and the doctors took that away with their certain death sentence of a year or less. I would appreciate hearing from you and sharing your experiences.
Blessings,
Vivian
Suanne, the delima we will have soon is to treat or not to treat with conventional methods, in regards to quality of life. I believe age may be the factor, but considering my husband's medical history and good health prior to this, I am inclined to try. Anticipating your response.
Srijana, my husband is 2 months post surgery for gliosarcoma grade IV. in right frontal lobe. His surgery lasted 6 hours. That is a lot of anesthesia! The surgeon said he got it all out working with a microscope. Second MRI done two days post surgery from ICU showed clean wih only a few blood clots from the surgery Six weeks in a rehab facility due to weakness and slow recovery, mostly due to advanced age (69 at time of surgery) and the extensive amount of anesthesia and length of surgical time.
He has now advanced in physical therapy to the point that he can slowly walk assisted to bathroom and from room to room. He is schedled to be discharged to home on January 6th. with a home health agency in place to assist me. Then my work as primary caregiver begins in earnest!
We have not decided yet as to course of treatment, but he is leaning towards radiation, but no chemotherapy. We were doing the Budwig diet in earnest two weeks prior to surgery. This has been difficult to continue properly while he has been in the rehab. facility due to my having to preparing the food and transporting it in a cooler, etc. We plan to continue the diet in earnest when he comes home, along with aromatherapy oils, (sacred Frankincense and some others) No sugar or preservaties, a total lifestyle change. I have cleaned my kitchen and pantry and freezer of all unhealthy foods in preperation for doing everything possible with diet. As a result, I will be eating healthier also. You may also want to check out the vegan diet books, "Forks over knives". The Budwig diet increased my husband's energy level significently, prior to surgery, and anyone who has received radiation and chemo can certainly use that!
Excercise, get as much sunshine as possible, try to stay positive and make every day count, and keep faith in God, who after all, is the greatest physician of all. You can do an internet search for the Budwig diet, and get all the information you need. Good luck with your mom and live one day at a time, creating beautiful memories. Would like to stay in touch with you and share our journeys.
Hi, how are you doing? My Mom was diagnose also with GMB IV, She has went to surgery and now she is with radiation and quimio. Any advise?
Hello, please I would like to contact you, we live in Spain, my brother had been diagnose to have a gliosarcoma, I so would like to contact you, we need hope, thanks
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Dear Pat, please, I was also looking to communicate with Ben Williams but couldnt, we are Spanish, we are desperate, my brother has a gliosarcoma, and i feel we can do something for him, its just in our hands, I do my research as best as I can, and now I find your email also mentioning Ben Williams, please help us on this one, we also need some suggestions, love, Alicia.
Sorry, that was a mistake text. Iam a 46 year old mother diagnosed in January with GSM, I have had radiotherapy, chemo, on my 3rd cycle of 5 day temporary now. Would love to get in touch