20 years GBMIV Survival

18 Posts | Page(s): 1 2  Next 

20 years GBMIV Survival

by kat54 on Sun Jan 20, 2013 11:25 PM

Quote | Reply

This month marks my 20 year mark.  I am one of the many out here that are still trying to put an end to the terrible statistics  out there.  I have had many through the years suggest that maybe I didn't really have GBMIV.  My pathology slides have been reviewed by M.D> Anderson, Johns Hopkins, Dana Farber & Brigham & Womens in Boston.  I would hope if it wasn't GBMIV one of them would have caught it.  I have had two resections, 1/18/1993 and 6/1/1995.  I only did radiation which you can imagine how different it was 20 years ago and stereotactic radiosurgery by Dr. Jay Loeffler in March 1993.  I did not do chemo because at the time it did not cross the brain blood barrier.  I saved that for a last resort and so far have not needed it.

All I can say is fight with all the current knowledge you can find.  Have no regrets over choices you make.  Don't let the statistics get you down.  I don't know why they are still so dismal when many are surviving years instead of months. 

my surgeon was only 32 when he did my first surgery but he had all of Harvard neurology at his finger tips. We were in South Louisiana (we're not all swamp people I don't like those shows)

I know in my heart I received a miracle but every year I am seeing more and more.  Don't give up stay positive. and be patient recovery will not be overnight.

I wish you all the best in this struggle and pray everyday for all I meet on these sites .  Kathleen Rhodes 

 

RE: 20 years GBMIV Survival

by kwolery on Sun Jan 20, 2013 11:34 PM

Quote | Reply
Kathleen, Thanks for the encouragement!!! Please tell us, what have you done to be a 20 yr survival? My husband just had his second craniotomy and his MRI came back clean!! I want to be very proactive with his health and try to stay on top of this nasty cancer. What resources can you give me? Thanks Kathy

RE: 20 years GBMIV Survival

by SarahGrey on Sun Jan 20, 2013 11:52 PM

Quote | Reply

Oh my God...  thank you and bless you!  LOL I think I can safely say, that when any of us read stories like yours, we all want to throw you a party and celebrate!!!  :)   Thank you for sharing and for the hope you've given all of us!

RE: 20 years GBMIV Survival

by jwest2007 on Mon Jan 21, 2013 12:06 AM

Quote | Reply
Hi there I just want to say thank you for your post. When my Friend was diagnosed with GBM iv everything Was so bleak and hopeless. Her cancer is inoperable. so with WBR alone there seemed little hope. She had her radio last year with a less than hopeful MRI follow Up last week Jan 17th 2013 and got the wonderful news that for now the cancer is arrested. She has always been deeply religious, and held strongly onto her faith. I know people are suffering beyond my understanding and don't need false hope, but this respite and experiences such as yours help to maintain hope while that is Something still healthy to hold on to. I know she is Now looking at research being done on how copper is proven to be toxic to various brain cancer cells and if this is something she can try. Anyway her spirits are in good Shape, whilst remaining realistic, she is hopeful. Hope can't be a bad thing if it helps you through each day. Only she can decide, if the time comes, to accept. But while ever she has hope and faith or not I want to walk with her as much of her journey I can. Is anyone out there looking at or experimenting with Dr Wangs research on the toxicity of copper on brain cancer cells ? Any thoughts or advice would be really appreciated. Many thanks

RE: 20 years GBMIV Survival

by kat54 on Mon Jan 21, 2013 12:41 AM

Quote | Reply

Kathy I  hate to tell this but I decided if I only had 6-9 months I was goig to be happy so I lived mostly on chocolate and real coke -no diet stuff for me. I slept alot, craved peanut butter and jelly sandwiches with the biggest glass we had of chocolate milk. I just figured one day at a time no plans for real longtime.  Lots of prayer!!  I tried to go back to work but seizures started and I couldn't think through my work routine so I went on ss disability.

Things have changed so much since I was first dx learn all you can from these sites.  I almost hate to post on the message boards.  my journey has been so different from most.  I do see other 10 - 20+ year survivors like me who have had similar cases like mine  with few problems.  I wish there was an explanation.  There is Cheryl Broyles who has had several resections and just recently climbed Mt. Shasta.  Matthew Fullerton was dx in 1987 or 89 still going strong.

In the last couple of years 2 who had survived 14 years had a recurrence and within months passed. I wish there was some magic advice but there isn't just dn't let the statistics keep you from hoping.

RE: 20 years GBMIV Survival

by GerardT on Mon Jan 21, 2013 09:34 PM

Quote | Reply
Thank you so much for sharing your story. We begin radiation and temodar treatment next week. My wife has had two surgeries to remove a cyst of fluids and implant an Immaya Reservoir. She will be in treatment for six weeks and taking temodar. She is doing okay and recovering and anxiously waiting to start treatment. We are prepared to fight and trust in God and our doctors. We take it one day at a time. My wife, Maria, of 33 years is an angel and is ready to carry her cross. She is very positive. Thank you again. GerardT

RE: 20 years GBMIV Survival

by vwxyz on Sun Jan 27, 2013 10:22 PM

Quote | Reply

I cannot remember if I asked you this question before, but did you do anything to boost your immune system in an alternative way other than what the N.O and R.O. ordered for your treatment and  survival?   I have been talking to Billie Best's parents at a church I attended this morning and they are solid with boosting the immune system with essiac tea and the shot from Canada, and juicing, eating right.  The shot is supposed to cleanse the body and boost immune system, but Jeffs N.O. said NO infatically with cleansing.    So, to repeat, Did you do any alternative anything or see a Natropathic Dr. other than what the N.O. Doctors ordered for treatment?  Waht do you think about the Essiac tea and the shot Billie Best took for his immune system?   Thank you for your encouragement.  Jan

RE: 20 years GBMIV Survival

by kat54 on Mon Jan 28, 2013 12:53 AM

Quote | Reply

Jan, I am sure all that helps.  When I was first diagnosed there weren't any longtime survivors to follow.  everyone including dr's really expected only 6-9 month survival and did not reccomend anything but stay comfortable.  I put off all other check-ups like  dental.gyn etc.  after 12 years when I turned 50 I started taking care of myself again.  I just kept feeling like there was another shoe to drop anytime.  I didn't know sugar was so bad for tumors.  I literally lived on chocolate and real coca cola.  with my ridiculous diet, no tennis, golf or work and steroids I soon gained almost 100 lbs.  I have lost 70 of that. 

I now try to eat sensible and exercise some but I am not up on all the latest immune boosters.  I would follow dr's orders as they know how all those thing affect absorbtion and effectiveness of medications they prescribe.

RE: 20 years GBMIV Survival

by SarahGrey on Mon Jan 28, 2013 01:55 AM

Quote | Reply

On Jan 28, 2013 12:53 AM kat54 wrote:

Jan, I am sure all that helps.  When I was first diagnosed there weren't any longtime survivors to follow.  everyone including dr's really expected only 6-9 month survival and did not reccomend anything but stay comfortable.  I put off all other check-ups like  dental.gyn etc.  after 12 years when I turned 50 I started taking care of myself again.  I just kept feeling like there was another shoe to drop anytime.  I didn't know sugar was so bad for tumors.  I literally lived on chocolate and real coca cola.  with my ridiculous diet, no tennis, golf or work and steroids I soon gained almost 100 lbs.  I have lost 70 of that. 

I now try to eat sensible and exercise some but I am not up on all the latest immune boosters.  I would follow dr's orders as they know how all those thing affect absorbtion and effectiveness of medications they prescribe.

How funny if chocolate and real coca cola is the magical cancer cure we're all looking for?  ;)   

RE: 20 years GBMIV Survival

by alexyj23 on Mon Jan 28, 2013 09:17 PM

Quote | Reply

Congratulations!  My dad was diagnosed April of 2012 and his is not operable, however he is hanging in there.  He gets tired a lot and today I found out that he has been having more frequent seizures that are short, but are a little painful this time.  Did you ever experience anything like that?  His is in his temporal lobe.

18 Posts | Page(s): 1 2  Next 
Subscribe to this message board discussion

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.