Oligoastrocytoma grade 3 - looking for answers....
Looking for answers...
I'm new on here and was wondering if anyone has any input. My 37 year old brother was diagnosed in February with AOA grade 3. (Anaplastic oligoastrocytoma). Majority of the pathology report reads low grade or grade 2 with a small portion graded 3 based on the cellular proliferation rate. He had a crani with 100% resection with little to no deficits and he is currently receiving temodar and proton radiation. He does carry the IDH1 mutant gene.
There seems to be 2 things that he's stuck on and can't seem to get past. Overall survival...or progression free survival...every statistic that you read is pretty bad. Even if you find the perfect case study that states 10 years progression free. The thought is pretty scary after everything we have gone through and the fact he has a 2 year old child. The other thing that he's stuck on is, what caused this. Obviously after this diagnosis you want to live your life and eliminate as many of the 'triggers' that could've potentially caused this to form or grow from a dormant state. ?? I've read a lot about it being genetics, stress, virus, etc. He's changed his diet. Only eating organic fruits and vegetables and no meat. Just didn't know if anyone had any thoughts on how I can help him get over these 2 areas that he is focused on. Anyone know of any good websites with great statistical information that shows he will be tumor free for 40+ years? Or a website, that tells you exactly what to avoid to help prevent regrowth? I obviously realize that these don't exist but any insight would be helpful. Thanks.
The good news about the overall survival/progression-free survival comparison is that there's a lot of overlap there. People with brain tumors tend to have a relatively high quality of life until the very end, and there's a close correlation between overall survival and recurrence.
The bad news is that we don't really know what causes this. It's always a good idea to try to lead a healthier lifestyle and eliminate potential causes of disease but as for what specifically caused your brother to get cancer? We just don't know where gliomas come from. It's entirely possible that there is no external cause. DNA modification occurs naturally; it's how we got to where we are. Sometimes it turns out good, sometimes not so good. As an aside, I think your brother should consult a dietician if he can, preferably one recommended by his oncologist. Mine told me to eat lots of meat during my chemo and radiation, since my body needed those proteins to repair all the damage.
I wish I could give you some statistical information that shows he's going to have an objectively long life (particularly since it would likely show that I will as well), but I'm afraid that the only people offering that kind of information are charlatans and quacks. With 100% resection, few deficits and follow-up treatments, your brother is in about as good a position as he can be to fight this thing, but there has been a ton of progress in the field of glioma treatment over the last decade. That means there are all sorts of new treatments on the horizon, but that we don't have any solid clinical data on how well those treatments work.
It may also be that they managed to kill every last cancer cell in his brain. There's no way to confirm that, but we have some people here on the boards who have more than doubled that ten year projection. I myself have something very similar to what your brother has and my doctors think I've had it for 15-20 years. It's not a death sentence. It's not like your brother is going to reach a certain date and then the doctors are going to come euthanize him. He is alive right now. Some day he won't be. That day may come soon or it may not. The same can be said for anyone living today.
I hang my hope on the fact that even if doctors can't fix me today, they can help me live to see tomorrow, one of these tomorrows they're going to be able to offer your brother and I that 40+ year life span.
31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
I maintain the Ramblings of a Traitorous Mind blog as a chronicle of my battle with cancer and my related reflections.
I made a comment, but it vanished. Every single one of those indicators you mentioned is in favor of your brother being a longer-term survivor. I think he'll obsess about those two obsessions for a while and then move on.
Ryan, I was diagnosed with AO III last June and I've struggled with many of the same issues as your brother.
First, to answer your question on cause everything I've read says that except in rare cases there is no known cause (there are some rare genetic diseases and exposure to radiation that are known to cause this) for most of us. The only consistent factors I've seen of what you can do to stay healthy are: eating a quality diet, getting lots of exercise, maintaining a good attitude, and getting regular scans.
In terms of survival stats there are some things that you need to understand. First the statistics that you read are all the median survival. This is the point were 50% of the people in the study have perished, but it also means 50% of the people are still around. In most cases the right tail (the years > the median) have a very long tail which means that the next 50% may be around for a much longer time. Also, remember that if a study says a 10 year median survival, you are looking at the results of treatments using 10 year old technology. For oligodendroglioma and oligoastrocytoma there have been huge breakthroughs in understanding of the genetic structures and how to treat them since the late 90's. Also, with the already long median survival time, there is a lot of time for new, more effective, treatments to become common. A very encouraging study that was recently updated with follow up data is RTOG 9402 (just Google RTOG 9402). The conclusion from that study is that treating oligos that have the 1p 19q codeletion with chemo doubles the median survival from 7 years to over 14 years.
These are the things that help me to be optomistic. It sounds like your brother has a lot of positive factors (low grade, total resection, IDH1 mutation, limited disability). It takes a while to deal with the new uncertainty, but these facts have helped me to be positive about my future.
I would like to echo what everyone has said so far about new research and the promising outcomes of low grade brain tumors. The IDH1 is s really important one—survival rates are significantly higher. I won’t waste your time in repeating it all because everyone has already said mush better then I would.
The fact still remains though—we have brain tumors and all that entails. Mine is grade II Astrocytoma. While everything everyone has said is reassuring I still have days where I get down—for the simple fact that I know it is something that will be with me for as long as I live. I will always have to get scans. I will always have to report “brain cancer” on every medical thing I do. They will not even let me donate blood until I’m 5 years clear, which used to be my one good deed every 8 weeks . The good news is I notice myself dealing with this better than I did 6 months ago and WAY better than I did 12 months ago. I did the exact same things your brother is doing. I was obsessed with finding something I could do that would give me even the slightest bit of control over this. I started taking some supplements (fish oil, turmeric, green tea, and vitamin D-3) and I did start to eat a little better (though I still enjoy a good steak once in a great while—you have to in TX). I do buy organic when I can. All of these things are things that would be good for anyone, they will not guarantee preventing recurrence—they really won’t guarantee anything; however, you have to take comfort in anything you can find. For a while changing all these things gave me the sense of having some control over this thing. Now, I have a better grasp; I know it will come back but I, and my NO, is hopeful that by the time it does they will have newer and better treatments. This is where the IDH1 comes into play. I am part of a research study which tracks the metabolite called 2hg which is produced by the gene mutation IDH1. Right now they think 2hg feeds the cancer and is an indicator of the tumor’s growth. In November of 2011 a pharmaceutical company started researching possible drugs to block 2gh thus starving the cancer. My part in the research study is just tracking the 2hg in the brain. The good news is my levels are almost undetectable suggesting the tumor was almost completely resected. I get high powered MRI’s every 3 months—when the levels change it will be telling that the tumor is coming back—this is much more accurate then looking at a regular MRI and trying to guess if the changes are scar tissue or recurrence. Also based on the amount of 2hg they have an idea of how bad the tumor is. Hopefully soon this will be the primary way brain tumors will be followed for everyone.
I tell you this to hopefully give you and your brother some hope. Things started to get better for me after seeing my NO and having her be so hopeful for me and time. Time as they say is the ultimate healer. I think your brother needs time. He needs time to acclimate to his new life. It took me about a year to settle into my “new normal” as many call it. I did nothing but obsess over all this for a while. I was very angry—I still am sometimes, but less and less. I’m not sure when this happened exactly but I started to think about the here-and-now more. None of us knows how much time we have. I started to make plans to do things I had always wanted to do. I don’t treat my life as though I’m dying tomorrow, but I don’t put things off either. I won’t say this is the best thing that is ever happened to me because of the way it’s changed my life, I hate when people say that. I will say it changed me and my family forever and there is no way to take that back.
As far as what you can do for your brother? I hate to say this but this is something I had to deal with on my own in a lot of ways and he may be the same way. I have a great support system and they were always waiting in the wings, so to speak, anytime I needing anything. But when it came down to it, I had to straighten all this out in my own head and in my own time. My friends and family treated me about the same except when they asked me how I was doing it held a whole other connotation. They were there for me but I isolated myself some because I had to work it out myself—but that’s my personality. I kept thinking everyone was deserting me but then I realized I was deserting my old self to find that new normal. It did happen though, so take heart that it will happen for your brother too. What he is doing is normal and I think it’s something he needs to do in order to move on. If he is still the same way in a year maybe then it’s time to suggest he get some help (which is never a bad idea after something like this)—but for now I would say let him do what he needs to do to get thought the day (baring anything that would physically hurt him). He will get better, he will settle into his new normal eventually.
Speaking from this side of things thank you for being there for your brother and caring enough about him to take you time posting here to ask about him. He is lucky to have someone who cares about him this much. Keep being there for him. Also remember things like this are hard on the family/caregivers too so don’t be afraid to be sad too and to take care of yourself. I am sorry you, your brother, and the rest of your family are going through this.
Thank you everyone for posting. I have found this site amazingly helpful and very promising.
I guess what my brother is going through is normal. He needs to figure things out and create his "new normal". He has always been active and healthy with no health problems and suddenly he isn't working, had brain surgery and spending 5 days a week getting radiation. It's been a major life style change for him as I'm sure it is for everyone. Seriously, I often find myself saying....this is absolutely surreal. He stopped researching the internet and relies on me to obtain "positive information" for him. He really struggled with seeing statistical information. ** Thank you Dave for explaining the median survival, etc. He is currently seeing a therapist -- he needed to see someone that wasn't so close to the situation. He told me he was having a difficult time talking to us because he didn't want to make any of us more upset about how he is feeling. He's gotten better, as have I when talking to him. He's opened up to me a lot more. He's looking forward to small milestones...being done with radiation, stopping keppra, etc.
Changing his diet and wanting to eliminate risk factors are his way of having control of something right now, I get that. He did have a consult with dietician through the U of Penn where he is being treated so he is making sure he is receiving enough protein, etc.
Irishgirl- Awesome about the 2hg....I'm going to look into this. Sounds very promising. Do they monitor the amount of 2hg via blood testing? Was this something that was noted on your original pathology report that they tested for? Meaning, have they pinpointed that all IDH1 mutant gene gliomas secrete this metabolite and my brother would have had this in his tumor as well?
These forums are a godsend and there seems to be a nice support system. I'm so glad I joined.
I’m glad he is seeing a therapist. It helped me too—and I am one to boot. . It also has been very helpful for my mom as she lost my dad to GBM-IV and had to deal with my diagnosis within a 4 month period. Therapy is great I highly recommend it—not just trying to get more business . I’s glad he is opening up about it. I still struggle with talking about it, especially with my family because we have all cried enough over the past year. I guess we basically try to live “normally” until the next scan and then we are pins and needles until we get the results, then go back to trying to be “normal”.
Only the Idh1 was present on the original biopsy. Tumors with IDH1 have so far been found to always produce 2hg this discovery is only e few years old which in medical research is infancy. IDH1 has recently been proven to be associated with longer survival rates (talking in years not just months). 2hg is tracked with a T-7 MRI; I don’t know of any other methods. T means Tesla, which is what MRI’s are measured in. Most MRI’s in hospitals are T-1.5’s and some are T-3.0’s. The T7 (I feel like I am talking about the end of days and terminators when I talk about this stuff haha) is only used for research right now and there are only about 2 handfuls in the world from what I understand. A physicist looks at the scans from the T7 and locates the cells which have the 2gh in them (i.e. the cancer cells that have IDH1 mutation). The research study I’m in is only focused on measuring recurrence/progression by 2hg. I get a scan every three months; it’s a bit grueling at 90 minutes—I can’t move the whole time. My teeth, ears, and jaw are in a lot of pain by the end but it stops a few minutes after I get up. They would like to prove that the T7 is an effective way to track recurrence/progression of brain tumors. I think for now they are focused on grades II and III but I could be wrong. My NO is involved in the study and she says the more cells with 2hg the more “active” the tumor cells (i.e. they are reproducing and the tumor is growing). She is very excited about this new technology because it is one of the first major advancements they have had in a while. She thinks this will become the new way people track tumor progression. Using this technology takes out the speculation that goes into reading a 1.5 and 3.0 MRI (speculation is a bad word to use. People who look at scans are of course qualified and know what they are looking at but it isn’t perfect). The 2gh count will also be able to give them a better clue as to the grade of the tumor I think. I’m sure they will continue to be reluctant to tell people what a tumor is until after a biopsy. With this technology it means they can catch tumor progression very quickly because they know exactly what they are looking for on a cellular level and they can compare it to your baseline to see what it has been doing the past 3 months. It’s all very interesting and I’m sure I would be more fascinated if it wasn’t my brain haha. I have no idea when this technology will make its way elsewhere and where it is available now but I am being treated at UT Southwestern in Dallas, TX. Most of my research only brings up articles from there so I’m guessing they are the only ones doing it? I don’t really know. I travel there every three months for the scans. The only other research that shows up for 2hg is the pharmaceutical company who started work on a medication to block 2hg. I have not done any thorough researching for about 4 months so there could be more information now. Good luck on your search and let me know if there is any more information I can share.
Thank you so much for all of the information. I am going to look into this study more. I think it's sounds like great news for early detection of regrowth and very promising if the pharmaceutical company can make a drug that could help so many this terrible disease. I can't imagine everything what you have been through with losing your father to the same type of disease. Cancer sucks. Thanks again!
My case is a little similar to your brothers. I've got an oligoastrocytoma grade II that was diagnosed with a seizure out of the blue just a month after having my second baby (seizure last July, surgery and diagnosis last Aug.) I had it seemingly 99% resection but the drs started to rethink that after time went on, so I had a second surgery in Feb. The RTOG 9402 data mentioned above is a really good one for your brother to read. I have it if you can't find it on the internet, but of course it's only good for your brother if he is 1p19q codeleted. I think a lot of people that are IDH1 posititve are codeleted. Basically it means a doubling of survival times for grade III oligoastros to 14 years - if they have chemo and radio upfront, rather than just radio and then doing chemo on remission. And who knows what medical science might come up with in that time..? I haven't had any chemo and radio yet as my NOs are saying not to for a grade II, even though mine was pretty touch and go with being a grade III. It's a bit scary but I'm going with it for now.
I'm probably repeating what the others have said, but it is really a matter of getting used to the "new normal." I've had terrible days (particularly before my second surgery) but most days I'm honestly ok. I've gone back to work one day a week and have two lovely children under the age of 4 to look after, so I am just enjoying all that I have, and trying to travel / have fun as much as possible too. I know I'm very likely to die of this cancer and I worry about having a stroke during surgery and all of those fun things, but I try not to have it forefront of my mind all the time. If I'm lucky and my progression free survival is a long way off, I just hope they've nailed some better drugs by then and I'll live to see my kids graduate from uni or marry or any of those big things. My thoughts are with your family.
Diagnosed with grade II oligoastrocytoma after a seizure in July 2011. Resection of approx 98% of tumour (hopefully). IDH1 positive and 1p19q co-deleted. On watch and wait status. No chemo or radio yet. Second round of brain surgery March 2012. Tumour still grade II thankfully.