One patient with glioblastoma still alive nine years later
by RallisonW on Sat Jan 12, 2013 01:31 PM
I was diagnosed in December with an Oligodendroglioma Grade II after at 95% resection was done. It was located in the frontal left lobe and what's left is in the corpus collosum. I'm going to start chemo soon for six months, although I found out yesterday that I'm "FISH negative". I keep reading about the "deletions", but don't know what that means and if that relates to the FISH negative or not (maybe someone can answer a sidebar question about this: is FISH negative the same as saying you don't have the deletions?).
Anyway, I'm there's a part of me that's grateful I have this type of tumor because it's slow-growing but when I read that the average survival rate is 10 years, that makes me really sad. I'm only 42 years old and have a lot of living to do. I hate to think this diagnosis is going to hover over me for the next 10 years until I'm supposedly going to die--that's not the way to live and if that's the case, there's no reason to live for another 10 years. I won't do that to myself--I have to figure out a way to move past this so it doesn't get the the way of my living. I also want to think I've got 30 years left!
Any advice or thoughts from other survivors is welcome.
by KrysannTHEmum on Sun Jan 13, 2013 09:52 PM
Hello fellow "ollie"...I too have a grade II Oligo, right side frontal...was diagnosed in 2009, had partial resection in 2010...only about 50-60% removal though...have had no chemo or radiation yet...but have had some growth so radiation will likely be my next move...only time will tell.
I don't know what FISH negative means either but If you are going to be starting chemo them I am going to assume that you probably have the deletions of the chromosones 1p/19q. These are 2 chromosones that may be naturally deleted from the tumour and respond well to chemotherapy treatment. This is thought to be a good thing as it opens up more possibilities for treatments for you and has a better longterm prognosis....I personally hate talking about prognosis because, EVERY day there are more and more advancements in medicine and know that there are more and more people outliving the times they have said!!
I do not have the deletions, which means for me that chemo may not be as helpful for my tumour, not saying that I couldn't have it, but my tumour wouldn't likely respond to the treatment as well on it's own...radiation would be first for me, or a combo of both...I have had a slight growth and will likely have to consider this soon...my next MRI is at the end of Feb...
I know how you feel when you say you "have alot of living to do"!! It's best to try and be positive and think Positive!!! I am 39 and have 2 kids, it's scares the heck out of me to think that I may not be here as they grow up, but never give up, live each day fully and do things that make you happy!!! I have plenty of blue days and days of bad headaches and not feeling well, but still try my best to do "normal" things...I scrapbook, sing in my church praise band as well as a celtic duo with my hubby, Have fun with my friends and kids, volunteer at a homeless shelter, whatever makes me feel good and when I have bad days...I take a break...I have been lucky so far and don't think of myself only living 10 years or whatever "They" say I'm going to live...I'll live and laugh until I can't anymore, maybe we will have 30 more years!!!...and everyday is precious whether we have a brain tumour or not...you can talk to me anytime you need to...we can swap advice if you like and so on...I happy to help and honestly us "Ollies" are a rare bunch so we need to share as much as possible!! Good luck with your chemo and take care!!
-more of a "warrior" than a "survivor"
by RallisonW on Sun Jan 13, 2013 11:15 PM
Thanks for responding to my post! I THINK the FISH negative (which is what they told me I have) means I DON'T have the deletions that respond well to chemo. However, they said that it will still respond to chemo--maybe just not as well as if I had the deletions. I wish we had more examples of people who are living with this tumor well beyond 15-20 years. I bet they're out there...do you know of any? I have to think with the new chemo treatments, people are living longer?
I'd like to get to a place where I'm okay with the diagnosis and I'm not thinking about it all the time. Have you gotten there yet? How long did it take you to stop thinking about it every day?
My situation is complicated by the fact that I was diagnosed with breast cancer at the same time. I'm going in for a double mastectomy in a few weeks, although it's been caught early so I feel a lot less concerned about it.
It's such a surreal experience to be here. Just two months ago, I was living life as if I had not a care in the world. I'd like to go back to that feeling again but I don't know if that will happen again. I DO know that I want to be really positive and stay 10 steps ahead of the cancer so I'm out-smarting this thing for the next 30-40 years!
by KrysannTHEmum on Mon Jan 14, 2013 02:16 AM
found this article on FISH testing!! Interesting!
I don't know of anyone personally, besides myself and some people on Brain tumour Support groups who have an Oligo, but I have heard that some of them ARE beating the odds and living 20 years and more...the problem is that because our tumours are more rare, we don't have as much data on longterm results to treatments and often they move up in grades... but I keep thinking that say in 10 years...what new changes will there be?? It's endless... I have heard of people with GBM...one of the worst tumours...outliving their prognosis by MANY years!!! I think the main thing is to not go by years...don't read up too much on "how Long" you have...honestly I STILL think of it everyday...the difference is I used to think of everyday as doom and gloom, and some days I still do,,,but MOST days are enjoyable and I think of all of the good stuff and say that I WILL be there...like my kids highschool grads and weddings etc...I want to grow old with my husband and I used to cry that I won't get to...now I just believe I will and even if I don't...I will be enjoying every minute until then!! It has made a big difference...falling into a depression would likely kill me before the tumour would..not a fun place to be.
It sounds wierd but I don't know who I'd be without what I have had to go through and will be going through...it's changed me and humbled me...I don't want it...but I have to make the best of it and fight it!!!Thinking about it everyday doesn't have to be a bad thing, just don't let the sadness consume you all of the time...
I am sorry that you have the added burden of the Breast cancer diagnosis...wow, that is alot to handle!! You have been through so much for one person...I will be thinking and praying for you!! Glad to hear it was caught early and that you are taking steps to overcome it!! Good luck!! I hope to hear from you again, let me know how you are!! Take care! Krys
by shariv on Tue Jan 22, 2013 09:48 PM
I am really sorry that you are going through this! Krys gave you a lot of great advice! I don't know which hospital you are going to, but make sure it's a good hospital that has a brain tumor board and is ranked high on US News and World Report.
Also, temodar works much better if you have deletions. I have an oligo and don't have the deletions. I was diagnosed in 2008 and had a partial resection then and another partial in 2009. It had upgraded to a grade 3, so I had temodar/radiation and then 6 months of temodar. The tumor was stable until May 2011. The dr told me I would have to start another chemo if it was larger in Sept. I got all of these "signs" to go vegan and I cut out all animal products in early June. I had already cut out sugar/junk food and was eating lots of vegetables/fruits/whole grains/nuts but was still eating chicken (w/out hormones or antibiotics), eggs and milk. The MRI in Sept 2011 showed no growth and the tumor hasn't grown since! That is what worked for me. This whole foods, plant based diet is really hard, but I do my best!
Please don't worry about how long you have to live. I know it's hard not to. I remember waking up in the morning feeling great and then I remembered and got this horrible feeling of dread. I was ok the rest of the day, but that happened every morning. I prayed that it wouldn't happen anymore, and it never happened again. About a week after my first surgery, I was driving by a cemetary and saw a funeral taking place. I started thinking about my funeral and started crying. On the way home, I drove by again but looked across the street instead. There was a church with a sign out front that said "people who worry find death in a hurry". Crazy!! Since then, I try not to worry or think about the bad stuff. I don't think about it every day anymore. I am very lucky that I don't have any symptoms/side effects so I can live a normal life and don't have that to remind me.
I research brain cancer survivors online. That helps so much! It helps me stay positive and I just keep saying that God gave us a miracle and keep believing that I'm going to live a long time. I am married with 3 kids (9, 12, 14) so it will be hard to leave them and not see them grow up. Being faithful and positive helps a lot. Like Krys said, it is better to enjoy the rest of your life than to be depressed and upset the rest of your life. It is your choice to be happy and make the bad thoughts go away. But I know how hard it is. I still get stressed before I get an MRI.
Before i started radiation/chemo, I went on this board to see what it was like for others. Not a good idea because it scared me to death. I drove back and forth to radiation treatments (1 1/2 hour drive each way) and the only side effects I had from radiation was hair loss. So even if a lot of people had a bad experience, it doesn't mean you will too.
I don't know of any long term oligo survivors either, but there is a post on this board where a lot of people with oligos post. Look for a post about oligodendrogliomas with a lot of responses on it!
I have talked to a man in Texas who has a daughter who was cured of a brain cancer (I think it was medullablastoma). She had surgery, chemo and radiation. It didn't work and they told them to call hospice. Instead they called a naturopath in CA and did what he said (supplements, juicing vegetables, going vegan etc) and her tumor disappeared and she is fine now. His name is Ben and his daughter's name is Josie. He would be happy to talk to you and let you know what they did. His contact info is on the website below:
There is an "incurables webisode" on Josie too. That link is:
I also know of a long term GBM survivor (9 years or more?) who is on this diet. His wife posts on this board sometimes. Her name is Lauren Smith. Her name on this board is lsmith. You can search user names and read her posts. She is one of my "signs"!
There are quite a few long term GBM survivors out there and that is a great thing!
I hope this helps. You can contact me if you have any questions or just need to talk. Praying for you!!! Take care.
by dmercer on Wed Jan 23, 2013 02:30 PM
I'm also not sure what they mean by "FISH negative." FISH is simply the process of testing for chromosomal characteristics. It probably means that you are negative for the deletions, or it could mean that the 1p19q are indeed missing, thus the negative for the particular genes. I would call and clarify this, immediately.
There are many long-term survivors with this tumor. I started a post on this board recently, but also in an Oli specific email list-serve I am a part of. If you private message me, I can email you those stories and get you set up to join that list. Most on this site are GBM, but this email list is only Olis. It is run by the Brain Trust. http://www.braintrust.org/
Grace and Peace,
by KrysannTHEmum on Wed Jan 23, 2013 03:10 PM
wow, now I want to thank Shariv for this post....funny how we help someone, then turn around and someone else helps you...I needed to re-read my own advice and read your post Shariv...I have only had 1 seisure before...almost a year ago, but have felt little twinges hre and there..I have been feeling so "normal" lately..until last night...I had a simple partial come on very quickly lasting a few min, then a few more...then one that lasted 90 minutes...mostly just my hand and fingers on my left side were constantly moving...scratching movements...or like I was typing..a bit of neck movement and a whole lot of anxiety!! I am on only 750 mg of keppra a day...so hoping that maybe just upping the dosage a bit will take care of it for a while again...will be getting and MRI and seeing the doc at the end of Feb, beginning of March...My hubby had to go to an important meeting so myself, and my 13 yr old and 10 yr old were home and I am so teary eyed when I say how proud I am of how they jumped in to make my comfortable and do the after dinner things, they are awesome kids and I had to fight back tears when I thought about how this feels like it's gonna be bad again..my thoughts are "Is it growing", changing stages? brain swelling?? am I going to get through this...radiation now?? The fears really are never ending, it's just getting used to what you are dealing with...feeling sad that I have had another seizure, I know I won't be getting my drivers license back now..was coming up to a year since my first and last one...there goes that idea...can cope with it, just saddens me...loss of freedom that I hoped I would get back this year.
Shariv, I am intrigued by the diet you are following...I am really wanting to try some of these adjustments...I have lost 45 lb since last spring by cutting out junk, sugar(I'm diabetic anyway, but have a treat every now and then) and eating smaller portions...I'm not a huge meateater anyway, drink almond milk and could likely cut out alot more in the animal dept. luckily I love veggies of all kinds but Could you give me any more advice on how you get your protein in? supplements?do you take B12?etc. Anything that can slow the rate of tumour growth, I am willing to try...I am 39, have 2 kids, 13 and 10...I have the will to live, just need some more health advice...foods and things that may help slow the growth of this oligo!! This message sure popped up when I needed it!! Thank you so much...Krys
by shariv on Wed Jan 23, 2013 07:13 PM
I'm sorry you had another seizure last night. I'm glad your kids helped out! Did you talk to your doctor about it today? I wonder if they will have you come in for an MRI earlier than Feb? If it's nothing, it will ease your mind and you won't be worrying about it until Feb. It's so hard...I don't want to know if it's going to be bad news, but I know I need to know so I can take care of it.
You can get all of your nutritional needs from this whole food, plant based diet except B12. I do take a B12 supplement along with a multivitamin, omega 3/6/9, quercetin, resveratrol, curcumin, immune renew, and black raspberry. Not sure if I need all of it, but too scared to stop taking them.
I juice vegetables and drink that each day. You can drink it as much as you want! I can send you a recipe that I got from the naturopath in CA who healed Josie, and it is on her website. I eat raw or steamed vegetables (mostly raw), berries, other fruit, nuts/seeds and whole grain pasta/bread. I use coconut milk in oatmeal or grape nuts.
When I cut out animal products, I was always starving! I had to eat pasta a lot in order to feel full. After a couple of months, I wasn't starving anymore. Your body adjusts, but it takes a little while.
If you want a lot of great information, you can watch the movie 'ForksOverKnives'. It is amazing! After I watched it, I put it on facebook, and my husband watched it too. He and other people have started eating better after seeing it. I would watch it first. I found it free on hulu. The link is:http://www.hulu.com/#!watch/279734
by ceejay4pres on Thu Jan 24, 2013 09:15 PM
I was diagnosed with a grade II oligo after a 98% resection in July last year. It was in my right parietal lobe. Did two months of radiation and now I'm on 6 months of chemo. I'm 26, and I'm remaining positive about my outlook - I understand they didn't used to give radiation and chemo to low-grade glioma patients until recently, and even then, I've seen many blogs/ stories about people surviving 20 years or more. And here we are, in an era where technology and medical research is progressing so rapidly.. who knows what new drugs may be available when we have a recurrence.
Also FISH stands for Fluorescent In Situe Hybridization. It's basically a stain or dye that fluorescently highlights specific chromosomes in cells. If your test comes back positive it means you have the chromosomes in question. Negative means you do not have the chromosome - so you do have the deletions!
by drdtc on Fri Aug 16, 2013 02:41 AM
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