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In treatment for Glioblastoma right temperal lobe grade 4

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

I am a 43yr old married mom to a 8 and 10 year old. Imagine my surprise to find out I had this after almost no symptoms. I was diagnosed Jan 3 and had surgery Jan 9th. I am nearing the end of my treatments now. Well..1st round. I have never been so terrified in my entire life. It took me 2 months even just to sit and type this. They believe they got it "all" but of course they can never be sure. Treatments are actually pretty easy, I have 8 more days chemo and 11 days of radiation left. The radiation is now starting to kick my butt! I have never been so tired! Pretty much everything I have read here has been encouraging! I am just so happy to know I am not alone.

Rory1987's picture
Rory1987
Posts: 122
Joined: Nov 2009

WElcome to CSN.

Radiation does make us tired, When I was having my WBRT I felt very fatigued that I want to sleep but I cant sleep. How many radiation treatments do you require?

Tracey011
Posts: 1
Joined: Mar 2011

You are so not alone, my brother also has Glioblastoma Grade 4 and is doing great. He was diagnosed in July 2010, his tumor is/was located in his left lobe. He went for an MRI last Thursday and he is doing great, they believe they were able to kill it all. He is going for one more month of chemo, he is on Temodar. I know how frightened you are, I just hope that this gives you hope to hear of a success story in the making. Sounds like you have a success story of your own going on here as well.

Grandmother_of_9
Posts: 1
Joined: Mar 2011

Hi-- I was diagnosed with stage 4 glio blastoma in September of 2010. I had surgery Dec. 7. They said it was very sucessful-- meaning they got everything they could see. Then I was on 6 weeks of radiation and chemo. I will have an MRI on March 14, and hope it's all good news. This is a long, complex road, and you have to keep your spirits up. I am much older than you are (72), so my prognosis isn't so good, but I still have hope of spending some more good time with my family and friends. Fatigue, unsteadiness, and what feels like a bad sunburn on my scalp were the only symptoms I had from the radiation and chemo. I did have a lot of "floaters" or halucinations from the surgery and meds, but that all went away in just a few days. There has been a lot of research on GBM, so trust your doctors to do the best they can for you. I have a team of doctors at Cedars-Sinai, and I know they are the best there is!

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

I finished my 1st round of chemo last night. I thought I would be thrilled, but I am terrified. At least I knew it was in my body everyday doing hopefully what it is supposed oto be doing and killing this thing. I have 6 more radiation treatments left and that is scaring me to.

Survivor_of_GBM
Posts: 2
Joined: Mar 2011

Tammy-I am a 41 year old mother of two-3 and 5 years old and was diagnosed with a GBM almost a year ago. Following the gold standard of treatment-surgery, radiation, and Temodar (last summer) I had no evidence of disease and was PFS-7. I foudn that exercising -even just walking for 15-20 minutes, switching to a Whole foods diet (lean into it as best you can), and taking supplements_I take antioxidants_Juice Plus were very helpful. I also received accupuncture to boost my immune system. Stay positive-here is an affirmation that I repeated to myself morning and night: My intention is to influence the successful outcome of my treatment which will prevent the cancerous cells from growing or spreading. The brain swelling will be minimal and I will free of any other side effects. My immune system is strong and healthy cells are able to repair any damage quckly and mount a defense to keep me healthy and strong. The doctors will be amazed at how well I respond to treatment and in fact the tumor will shrink and fade away resulting in a full recovery. There will be complete healing. I will recover swiftly and fully. I will come off of all medication and be seizure free. I know this intention to be true and that all of the universe is supporting me. You can do this and win.

mgreggsmith
Posts: 22
Joined: Mar 2011

Excellent report Survivor_of_GBM. I agree with all of it. I'm 52 months out from my October 2006 diagnosis with a grade IV GBM. I am doing well. My March 10 MRI was clear, as have all previous ones.

Paralleling your recommendations, I found this book very useful: "Anticancer, A New Way of Life" (new edition) by David Servan-Schreiber
M.D., Ph.D. One deduces from the book that he had a grade IV GBM - and threw himself into research to save himself.

You can get the book on Amazon. When you go on the website for the book by all means watch the video.

TAMMY S's picture
TAMMY S
Posts: 16
Joined: Jan 2011

That was inspiring! Thank you! I consider myself A very strong person, and have dealt with this the best I can. I have been strong and have used humor. I refuse to let myself have a woe is me day. I have kids and a family I am fighting for. But it is getting more difficult. I have my MRI next Fri and am expecting the best results. But then again I never expected the results I got from the very first. Like I said.. I am just terrified to be off everything for a while and letting my body do what it has to do!

mgreggsmith
Posts: 22
Joined: Mar 2011

Recently I visited a friend who is gay. I am not. We've been friends since 1963. I mentioned to him that I wanted to get off Temodar and Keppra. He said: "Don't do that!" Apparently there was an effort during the AIDS crisis to encourage people to take a "vacation" from their antivirals and let their immune system to deal with it. Those who did never recovered back to the point where they first started the "vacation."

Your body is under assault. Give it all the help you can. Unless your doctors tell you to only "let your body do what it has to do" you may risk a serious relapse.

I'm doing well - because of my meds and my lifestyle changes. I want everything that helps: medications, diet, exercise, relaxation, prayer, etc. I want to use it all.

When I last talked with my neuro-oncologist about stopping Temodar and Keppra he said: "No. Something is working. Don't mess with it."

So....that is just one opinion and I am not a doctor.

I sincerely wish you all the best. You are a fighter. Don't give up.

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