Brain Tumour Survivor

Hi, my name is Kelly, my husband Kevin was diagnosed back in early November with GBM. He is 46 years old. I am devastated, as you know Im sure. My husband had surgery on Oct the 28th, 2010 at Skyline Medical in Nashville. We are from KY, on the border. About 3 hours after the surgery, the surgeon came out and told me he got "a lot of it out, it is malignant, he will need treatment, enjoy today while you can" and that was the last I saw of him. I brought him home 3 days later and he began radiation and 140 mg of Temodar 2 days before Thanksgiving. His radiation ended Jan 5, 2011. Feb 2 meeting about his follow up MRI showed that the tumor has "stopped growing, dead in the center, shrunk somewhat and should continue to shrink". This last week- (Feb 7-11) he had his Once monthly Temodar treatment of 400 mg for 5 days. My husband has very nice doctors here in KY, but I get the feeling he isn't getting all the care he should be getting with this. Their outlook is like "lets just see what happens" kind of attitude. I don't know what else to do. Kevin went from a strong, healthy, energetic military man who ran daily to someone I don't know anymore. I weep daily. He sleeps 14 + hours a day and I know some of that is because of the chemo and radiation he had. I cant take him off the steroids, every time they try, in2 days the swelling comes back and he is in so much pain. I decided the last time I was not going to take him off the steroid anymore until I know the swelling wont come back. After all, I'm the one with him day and night and I have to watch him go through this. Ive had to do my own research into side affects of radiation, chemo, other meds, etc. All this while caring for our 4 children, working and trying to care for my best friend. I have done some research as well on people who have had this, and I am amazed at the many people who when they had surgery, had the whole tumor removed! I am sick inside that my husband didnt get his entirely removed. Also, I see people talk about theirs being the size of an egg, or lemon, or bigger! When they told us the size of my husbands, it was the equivalent size of a roll of dice, or sugar cube in the right side of his brain, above his ear, kind of in the middle of the lobe. I dont get it. I dont know what to do. I cant lose him, I love him so very much. I joined this website hoping someone could help me, give me advise. Any insight from anyone would be greatly appreciated. Thank you. God bless.

Kelly

Welcome to the site Kelly!

Like your husband, I was very fit and shocked at my diagnosis. How could this have happened - I kept asking myself? I started doing research, found this website and here I am nearly four years later.

I had to let go, to some extent, of who I was previously and I decided to change. The main thing I changed was nutrition.

Everyone thinks that their diet is healthy, that this could never happen to them and that they are better than average. It happened to me and others on this site.

My current diet I gleaned from 3 books. "Anticancer" by David Servan-Schreiber is a must read as well as an intro to an anticancer diet. From the internet I learned about raw foods, especially eating veges and fruit. Another book taught me that my body tolerated higher carbs than protein. "Going Against the Grain" by Mellisa Diane Smith taught me the value of a gluten and grain free diet.

Unfortunately we have to accept that our respective medical teams did the best that they could. My surgery only removed 50%. We have little control, except second opinions, over our medical treatment. You learn to evaluate the information better and work out if you are getting the wrong opinion.

Now cancer is a chronic illness so it can respond to lifestyle factors. In my case I chose to believe that it would - so far so good.

I know how hard this was for my wife at the time. There is no magic cure to make this go away. What there is is living the highest quality of life and see whether this makes a difference on the quantity. Stephen Jay Gould wrote "The Median is not the Message". Stephen lived for 20 years past his prognosis.

Hello Kelly,

I can understand the feeling you have for Kevin's situation. I faced it nearly 2 years ago with my wife Denise (GBM4) who I thought was a very healthy person. I didn't know how I could improve what we did but there is always knowledge to be found. She is now totally well, her story is in the personal stories section (or look at www.tinyurl.com/25phtx4).

I agree that nutrition is a huge factor in success and that the "Anticancer" book is one of the best (see also his utube video - about 50 mins long - great). It ,along with other sources I mention in the story, just points out how powerful the humble veggies and fruit can be. I attribute a lot of our current success to this aspect.

I have spent a lot of time reading and surfing the net (still do) and now have a strong belief in what should be done asap while other things go on. I have passed exactly this on to a number of other people who have contacted me with cancer situations.

1. Flax oil/Cottage cheese every day (Budwig Diet).
2. Vegetable juicing with a crusher type juicer 150-200ml most days.
3. Fresh fruit - Mixed, 5/6 pieces per day (Dries Diet).
4. Less emphasis on meat, dairy, salt, sugar - more a veg based diet.

More than this can be done of course and we do as the story explains. I suppose my surprise is that such a simple regime that was easy to adapt to could have such a strong impact. But the more I read about this type of thing the more convinced I am. We got none of this advice from our doctors by the way, however they did a great job with saving her initially. None have asked what approach we took or take now, it's like it doesn't come into the equation yet I think it is the total solution.

Please hang on to the hope you will win, you can win and I'm sure you will find the way. Dave.

I am going to print out your wife's story so I can follow this. It is so hopeful. I feel like maybe when Kevin has his MRI in July, it will show a clear brain too! Oh Lord let it be so! I pray so hard for this.

Thank you for your replies, I have felt so alone. Maybe this is a good place to come to for me.

God bless,
Kelly

Hello Kelly, That's good if you got one's advice and follow that one if suited to you and give relief to your husband..... I think that proper cure and medication along with the care is much helpful to the patient..... Take great care of him and cure properly ...... Best of luck......

I need a advise for the brain tumour, is the natural treatment is good for this
disease. is it possible to come back in life after brain tumour.

I must agree that nutrition plays a center role in surviving this terrible ilness. My wife has a PhD In nutrition and she helps cancer patients on a day to day basis. She never got as much satisfaction from helping needed people as much as she gets from that part of her day. I wish I would find as much happiness in my job, but finances are less helping.

Hi everyone, I just wanted to update you about my husband. Ive been back to the website on and off but just didn't post anything. Such an up and down journey this is!

Kevin is doing well. This is "chemo week" and its his 5th round of the Temodar (5/23 plan). His latest MRI was last week and the results are that the "tumor is dead". So says his Oncologist. My husband asked to see it. The dr took us to a room with a monitor where we viewed his brain and there it was, a nasty pocket of pus the size of a ping pong ball in his right frontal lobe. Still a little swelling but not so bad. In fact, Kevin has been weaned down all the way to 1 mg of Dex in the morning and 1 mg at night. We had never seen any of Kevin's films, basically we never asked. I was immediately filled with anger. Ive been as positive as a wife can be in this kind of situation and Kevin has been too. He is great in fact, encouraging me and our kids at times. I said to the dr "that thing is causing all this trouble???" I want it gone! His dr is actually pleased with Kevin. I read the report, nothing has progressed, I saw the word "stable" and "no tumor activity". As far as size it didnt mention so much as that it hasnt grown, or It didnt say that it has shrunk.

Anyways, Kevin is doing good otherwise. He still battles fatigue, hasnt gone back to work yet, but that is his goal. I am hopeful, and really my hope is in God. We are believers and I know through all this, God has carried us. Its been just over 7 months now. Seems so long and yet, not. I am praying that next at this time, this will all be a bad memory. Kevin walks when he can, rides his riding lawn mower all over the yard. Driving has been suspended for awhile! We spent 8 hours at a friends house on Monday the 30th of May for the holiday where he swam for hours and enjoyed himself so much! Lots of people who see him cant tell he is "sick". Then there are days when he just feels like he has been run over 10 times by a grizzly bear. He eats great. Short term memory is not great, but I think I see a tiny improvement. Long term memory is so good though, and I am thankful for that.

I am grateful for this website. I read somethings I dont like, but I read a lot that is helpful. I tell Kevin what I read at times and it encourages him. We are excited to hear about this "vaccine" coming out of California. I wonder if anyone is considering it? I would love to hear from everyone. Take care and GOD BLESS!

Kelly :D