Cheryl B - Diagnosed in 2000 with a GBM IV
Cheryl and her two boys
During the summer of 2000 my husband Matt and I had been married for 10 years and our two boys were only 1 and 3 years old. Out of the blue, I started having a bad pain in the left side of my head. I couldn’t bend over to tie my shoe without feeling like my head would explode. An MRI showed that my brain was haemorrhaging in my left Temporal Lobe and needed surgery ASAP to stop it. During surgery they found a cluster of veins and arteries leaking blood (called an Arterial Venal Malformation – AVM) and hidden within it was an acorn sized brain Tumor – later diagnosed as a Glioblastoma Multiforme (GBM).
I was told I had less than a year to live. At that time, chemo and radiation possibly added only three months of life. The chemo sounded like it did more damage than good, so I decided not to take it. I went ahead with conformal radiation.
I decided I wanted to do everything I could to boost my own Immune System! My good cells outnumbered my bad Cancer cells! I started eating organic foods, eating lots of veggies and fruits, no junk foods or sugars. I started exercising 5 days a week 40 minutes, sleeping 8 hours each night, simplifying life and reducing stress. I started taking many herbal supplements and vitamins. And most of all, I gave everything over to God.
Life was wonderful and I enjoyed each second. In 2004 I wanted to celebrate surviving the GBM for 4 years and decided to climb Mt. Shasta, a 14,167 foot elevation mountain. I made it to the peak! Then two weeks later my MRI showed the GBM was back. In the same location as before. This time I went into surgery "awake", so they could map out my brain, avoiding damage to my language. They were able to remove the whole tumor, the size of a grape, and a buffer around it. Then I went onto the Temodar chemo, 5/23 schedule, 330mg. I stayed on it for about 1.5 years; then went off because my blood counts were getting lower and I wanted a break.
At that point my two boys were 5 and 8 years old, and I was happy to be alive. I looked and felt healthy and no one would guess I had been through 2 brain surgeries, radiation and chemo.
Then in 2007, the GBM came back again, in the same location. I went back into surgery while awake. They were able to remove the pea sized tumor and a buffer around it the size of a golf ball, trying to get any hidden cancer cells. I came out of surgery #3 wonderful. I went back on Temodar chemo. I am currently staying on Temodar as long as my body can take it. Now Oct. 2008, my blood is great and I’m still loving life! This summer Matt and I celebrated being married 18 years. I actually hit the big 40 years old since I was diagnosed, and celebrate getting older and gray hair!
The bottom line - don’t give up hope. You are not a number in the statistics! Don’t listen to the doctors if they tell you to go home and die. Plan to live and enjoy each second you have. Lean on God for strength and peace, He will always be there for you.
After I reached the peak of Mt. Shasta in 2004, I realized there was a similarity between trails up a mountain and trials of life. I was motivated to write a book to encourage others to never give up hope. My book, Life’s Mountains, tells the story of climbing both mountains – brain cancer and Mt. Shasta – hoping it will inspire others to climb their own life’s mountain! If interested you can get it at www.xlibris.com/lifesmountains.html
Update 24th February 2009
I'm scheduled for brain surgery with Dr. Berger at UCSF on March 9th. I decided to go with surgery to remove the tumor, rather than gamma knife (thanks for everyone's 2 cents!!!!). I want it removed to know for sure what type of tumor it is and get genetic tests. Dr. Berger says it's probably the GBM back again. It's only aprox 4mm and right on the surface, easy to get to. This will be brain surgery #4 and I'm not too worried (I'm a pro at it now - ha ha). I have recovered fast from the other three. My kids "spring break" from school starts March 20th, so I need to be in good shape to keep up with them and have fun!!!
I am more overwhelmed with trying to decide what to do next after surgery. Because my tumor is so small, I was not available for any vaccine trials. Bummer.
Just because it is back again, does not mean it's going to win!!! The GBM has already tried to get me in 2000, 2004, and 2007 and never got the best of me! Now in 2009 I am going to beat the battle again. I'm ready for the challenge.
8 years 8 months GBM survivor
Update 13th March 2009
Thanks to all of you for sending such great encouragement to me as I was heading in for brain surgery #4 !!!!!
I got the surgery on Monday at 2:00pm and was released on Wed around 2:00pm. I was up walking loops around the recovery floor, looking too healthy for them to keep me there any longer !!! The surgery went very well. The GBM was back, but only located on the surface of the meninge. So Dr. Berger at UCSF was able to remove all seen tumor, without digging into my brain. So this surgery was easy compared to the last 3 where they took out big chunks of my left temp lobe. My stitches hurt and my gut is all messed up, but my brains Cognitive ability feels sharper than it has for the last two years while on Temodar. Now I have been off the Temodar for about 4 weeks and my brain is thinking faster and clear. Well, I have to say that the Decadron makes my feel like I am on serious amounts of caffeine !!!! But I only have to be on the Decadron for 2 weeks, then off. I did not even have to take any Dilantin this time!!!!! I guess since they did not dig into my brain, the risk of seizures is lower. So really I am on no drugs now, other than Decadron. It feels GREAT.
I feel like I could go out and run a 5K. Really. But I need to just sit back and relax for a few weeks. They are more concerned that my stitches will have a harder time healing this time, since it is the same cut area the 4th time. Even more so, they cut out a chunk of my meninge and replaced it with cow tissue stuff. So they had to sew that onto my normal human tissue. It is very important that it heals very well. So I have to be very careful to not stress or increase pressure in the area. No running, no biking, not any exercise that increases my blood pressure, not even stress while pooping (which it HARD because I am constipated)!!!! So I am being very careful. I get scared when I read about others having a hard time with their stitches healing.
Dr. Butowski at UCSF seems to feel that since the GBM showed up again on the surface of the meninge, that he thinks my GBM was not caused by a stem cell going crazy and turning into GBM. He said that stem cells seems to travel in the brain, and not up into the meninge. So he is leaning toward thinking that my GBM was originally from just a weird normal brain cell that changed. This makes since to me, since my GBM was first found in 2000 mixed into the middle of an AVM (arterial venal malformation), which is weird to begin with. In 2004 and 2007 when the GBM came back, it was right on the surface / edge of the tumor cavity. Probably from a few cancer cells left behind. But in 2007 Dr. Berger took out the tumor (pea size) and a huge buffer around it (golfball size) to try to get any hidden cancer cells. So this time in 2009 when the GBM came back NOT on the surface of the tumor cavity, maybe that means he actually got it all out of my brain in 2007????? I HOPE SO.
Dr. Butowski said he thinks that there was probably a little GBM left sitting on the edge of the meninge after the 2007 surgery, but that it took 2 years for it go show up again, because the meninge does not have good blood flow. The GBM needs good blood flow to grow. So it probably took a long time for the GBM to get enough out there to get going. Plus he said that since there is not good blood flow in the meninge, that the Temodar probably did not make it out there to take out the GBM. So, since the GBM grew while I was on Temodar, does not mean that it did not work for me, but that it jut did not get to the tumor.
So they are taking a LOT of genetic tests now, to decide what to do next. See the MGMT, EGFR, etc. He said it will take a few weeks to hear back from that. So I get another "break" time from any chemo!!!!! My boys school spring break is coming up in a week and I feel great enough to go camping (in our relaxing trailer!). I'll take NICE slow walks in the woods, go bird watching, watch the boys catch lots of fish.
Matt and I actually had a wonderful romantic weekend in San Fran before the surgery!
Thanks again for all of your wonderful encouragement you sent to me.
Love Cheryl Broyles
Update February 2012
It's now Feb 2012 and I've survived the GBM 11 years and 8 months, yes I count down to days and hours too! I'm still alive and loving life. Currently on no "western medical treatments", but still taking many supplements, exercising, eating organic, Acupuncture, and leaning on God for strength. My last MRI in Jan. 2012 showed there was no seen tumor; great news. However, radiation and treatment damage is beginning to show up more. The MRI report says there are scattered foci of microhemorrhages in my left hemisphere due to post treatment changes and / or radiation induced cavernous malformation. I am starting to notice more problems with loss of words, memory, reading, thinking clear, etc. But still out there having fun in life with my family camping, skiing, biking, hiking, backpacking, rafting, canoeing, too many to list. I never let the GBM beat me while I am still alive. I'm still going to enjoy each day I've got. So if you have just been diagnosed, don't give up hope!!
Love Cheryl Broyles
Please don’t give up hope. Feel free to contact me via email and I’ll cheer you on!!!