Hello Everyone. Monika and I received some tough news last week regarding my brain tumor. Instead of spewing details, I'd rather share the note ai received from my dear friend and and GBM sister Cheryl Broyles:
GOSH that must have been hard MRI news to hear, that the GBM is back already! I'm so sorry it came back so fast. But as I said on the "Subject" line - Just because it's back does not mean life is over!!! Keep up the HOPE and fight!
Is it located right on the edge of the tumor cavity?
Why not surgery again?
Each time my GBM came back, I always went back into surgery to GET IT OUT! But so far, mine has not come back so fast. Well, I did have my last surgery in March 2013, then 5 months later this last August a new "spot" showed up that my doc thinks is the GBM back (but not sure). It was only 3mm in size in August, and over the last 6 months it has just grown to 5mm. So it is still tiny.
Since it is tiny this time, and not growing fast, I decided to hold off on surgery #6 and try to kill it off with diet and some "alternative" things. I started taking Metformin, DCA and medical marijuana. Have you looked into any of these?
What size is your new tumor? Easy to get with surgery? I guess I am VERY hesitant to ever use Avastin !!!! New reports that came out even shows it does not even add any "months" to a life!!! BUT taking it has some risks!!! Please read more about it before taking it! Over the years since it was FDA approve, I have heard MANY stories about patients taking the Avastin, then it causing the tumor to start infiltrating into the brain like a sponge. Avastin helps "stabilize" the tumor, by keeping the tumor from growing new blood vessels, which is needed for the tumor to grow. BUT often the tumors "mutate" while on the Avastin, become more aggressive, and since the tumor can't grow new vessels while on Avastin, it ends up spreading out all over the brain, all near "existing" vessels. So it infiltrates the brain, making it "inoperable". WOW I am too scared to ever take that stuff. So over the almost 14 years, I have never taken the Avastin. I will only take it if it's my last choice! Please just read more about it, so you know what you are signing up for!!!
Maybe try to see if you can have surgery again. GO to Dr. Berger at UCSF in San Fran Ca. who is one of the BEST surgeons in the world! Or some other GREAT surgeon, who can try to not only remove the "seen" tumor, but also buffer around it, taking out any hidden unseen tumor cells.
Chuck I am so sorry you got the bad MRI news. I'm over here in Oregon sending you BIG HUGS over the internet. Keep up the fight! I'm just getting to know you, so you have to stick around MUCH longer!!! Please know I am over here cheering you on, GO Chuck GO GO GO!
Sending you LOTS of love, Cheryl
By R. Simons on February 17, 2014
Chuck Collins writes about a life changing event in his life, a brain tumor, from its discovery to treatment on how he gets through it. It is a terrifying experience to anyone going through it but also quite terrifying for the person reading it as this can happen to anyone and being such a fresh experience in this life it is still so raw.
He is a brave man to write his experiences down as I think this will help anyone who is going through the same thing.
“That is our standard greeting in the hallways of our home. In fairness, I have had one more spill than I allowed for this month, so I can’t fault Monika for being concerned.
Have You ever filed someone in your personal “dislike” column for no reason at all? I have and honestly I don’t have the time or energy for it. It presents more stress than is necessary. It's important ro note that the likelyhood that anyone reading this wold know this particular person is beyond remote.
“I read your blog!” The Maestro proclaimed. I know this is a man too busy and he is one of four genuine geniuses I know personally. If he were being truthful, and other than being kind to his infirmed friend I can’t imagine he would embellish. So if such a man takes the time to stop by, I had better at least keep this updated. My friend is a musician, conductor and advocate for performance arts. We need more like him.
Please stop by and visit the young man’s advocate’s page here. I asked if they still need furniture while here in the Cleveland area and was told they are doing fine. I am going to visit him very soon and will share that with you after the fact.
Congratulations to WKDD and their Radiothon for Akron’s Children’s Hospital. The event raised well over $633,000! Awesome.
Monika and I could qualify as "Family of those dealing with the challenges of brain tumors, stroke and trauma." But we have been fortunate and while we can we want to help others and we encourage you to do the same.
Mission 4 Maureen
Mision 4 Maureen helps families of those suffering from brain cancer; stroke or tumor. click here for more information
Mission4Maureen provides financial assistance to families who are burdened by the staggering cost of brain cancer treatment.
“No one can do everything, but everyone can do something.” This is their guiding principle. Rarely can one individual solve the problems of another, but with small efforts on the part of many others, much good can be done.
Fighting for Yan is a remarkable effort by regular folks and some in rhe musi business helps families of those suffering from brain cancer; stroke or tumor. click here or on Yan's image for more information
An upbeat and inspiring book written by a stage 4 brain tumor survivor!
By MikiHope on February 26, 2014
What an upbeat and inspiring book written by a stage 4 brain tumor survivor! I highly recommend that everyone read this book. This book was written as it was happening and gives the human touch to a medical horror. Chuck Collins recounts his past and the mistakes he made which by his strength of character he was able to overcome. Family is very important to him and we learn a bit about each of them. His attitude of "I'm going to beat this" even when fear threatened to overwhelm him (which is totally understandable) is phenomenal. If ever the power of positive thinking is questioned then this book should be handed to that person pronto. Chuck Collins is lucky that he has some of the best doctors in the field and a very supportive wife, extended family and friends as this is also very necessary to the healing process. He also tells of others who weren't quite as lucky as he is. It is the last paragraph in this short very true biography written by the author which will stay with me always. He adds it as a personal note.
"You will wake up some mornings in a fog of doubt. You will feel more and more irrelevant and wonder why fight one more day? When that happens, please remember this, even before you became ill, all you had was one day. But this day is special and it will not be complete until you add your spirit to it. Eat, move around, see the spark of life, of the divine in the smallest things, do what you can and this day will reward you with another just like it, only better! Chuck Collins"
The Eye-Opener! Last Friday evening I attended a rehearsal for Gospel Meets Symphony. It is the 20th anniversary and the program is stellar! I have had a small role since 2007 in that I host the opening announcements and deliver a short monologue just as the second half begins. When it was time to step out on stage, I had been standing back stage. To my surprise that standing was enough to lock up my left hip and knee. Trying to get to the stage was more than an ordeal. It took two stagehands and I looked very much like a man with severe brain damage or cerebral palsy. I have to admit it scared the crap out of me. Saturday February 15th the show was live and I entered the stage on my own two feet, remain vertical and remembered my lines. It was a great night!