One patient with glioblastoma still alive nine years later
by Thanes16 on Thu Jan 19, 2012 04:28 AM
I am new to this message board, but not new to oligodendroglioma grade 2. I was diagnosed 11 years ago and had it entirely removed 10 years ago. I was 21 when the tumor was removed. My neurosurgeon told me the average life expectancy for a grade 2 oligodendroglioma is 11 years. He also stressed the importance of not looking at statistics. Everyone is different. I had MRI's conducted for 6 years and there was no sign of regrowth. My current neurologist, not involved w/ the original diagnosis or surgery, told me there was no need to continue MRI's. However, w/ the 11 year timeline approaching I have begun to wonder if I should have an MRI to see if there has been any type of regrowth. Should I have an MRI? Are there any other people on this board who have had this type of tumor for long period of time? If so, do you still have MRI's conducted or have you also stopped having them. I know this is a lengthy post, but I'm curious what others have done/do.
by Lorre_G on Thu Jan 19, 2012 03:54 PM
In our practice we continue to follow low grade patients. Mostly because we don't want to wait until someone becomes symptomatic before scheduling a scan. So even those many years beyond diagnosis are asked to come in a minimum once per year for an MRI.
by karenhasch on Thu Jan 19, 2012 04:06 PM
I've had the same oligo Grade 2 for 7 years now. I didn't get mine removed but I just finished up chemo treatments about 6 months ago because it had started to spread. The chemo has helped contain it and it hasn't gotten to a higher grade. I definitely would continue to get MRI''s, just to give you piece of mind. I have gotten MRI's every 3 months for the last 7 years and am hoping that gets changed to 6 months at my next dr. appt., but you really should continue with the MRI's. Whan can it hurt? It can only help you.
by onarolll on Sat Jan 21, 2012 05:59 AM
My wife was diagnosed with an oligo in 1998, benign at that time. She had two grand mal siezures, both right after drinking strong coffee, so she eliminated caffeine and has had no more siezures since. We tried a number of alternative therapies with limited results in the early years; some growth in 2001, underwent radiation and tumor was stable again for 3 years; in 2004 a rapid burst of growth caused Duke doctors to judge it inoperable (about 4.7 cm, left parietal lobe); got 2nd opinion (get more opinions, folks!) from MD Anderson and Dr. Sawaya resected 95% in an awake surgery - he is a genius. Follow up chemo, then clear MRIs every 3 months, then every 6 months, until just before Christmas 2011 all of a sudden there is recurrent growth and a cyst forming where the resected tumor was.
Looking at starting Temodar, but first have been taking the Ruta/CalPhos (search Ruta on this or other boards) homeopathic protocol with remarkable lessening of symptoms - we will have another MRI in 10 days, hoping to see some regression, in which case will continue just the Ruta and check in another 30 days.
I suggest continuing with regular MRIs, every 6 months at least. At 14 years since diagnosis, 15 years since siezures, my lovely wife is beating the odds and we will continue to do so, but it's good to keep an eye on the situation.
by Thanes16 on Sat Jan 21, 2012 02:54 PM
I appreciate the advice and support all of you have provided. I will be getting in touch my neurologist this week and schedule an MRI. As one of you said, what can it hurt? One of two things will happen after the MRI. Peace of mind knowing there has been no type of regrowth or treatment for the "return." I wish all of you the best, and I am glad I found this message board.
by misskittycat68 on Sat Mar 17, 2012 04:36 PM
my husband had oligodendroglioma grade 2 on the right side in motor strip area removed in oct of 1998 just about 14 years ago . Had a mri done every 6 months for first couple years & one in 2004. He was left with very slight paralysis in his left leg after surgery and they put him on dilantin for siezures 200mg a day never had any seizures for 12 years. He had a big seizure in 2010 along with many smaller ones so he had a mri done they said did not see any recurrence. His paralysis on the left side continues to get worse he has more seizures they increased his dilantin to 500 mg still having seizures so we went 2 weeks ago to see a neurologist to change his medicine put him on keppra 1500 mg a day but dr also ordered a new mri we just got the news they are seeing something new on this mri they call it enhancing foci with in the old tumor area supicious for recurrent tumor also some other satellite lesions. We just went to see our neurosurgeon this past wed he said does not see anything that jumps out at him but wants to do a MRS to tell if it is infact recurrent tumor. We are waiting for Blue Cross to approve it they denied it cause he just had a mri done. I have been reading that mri cannot show recurrence good because of scar tissue and like my husband had radiation after his surgery and that can cause radiation necrosis . So we wait hopefully they will call this week to get the MR spectroscopy done.
by misskittycat68 on Sat Mar 17, 2012 04:39 PM
i forgot to tell you my husband was 35 years old when they found his.
by phoff29993 on Thu Mar 22, 2012 02:16 PM
Good group. You don't see a lot of oligo discussions so I am glad to weigh in. I was diagnosed 11/2004 at age 55 so I am approaching the 8 year mark. I am oligo 2. Three different docs said no to surgery at the time because of location in the right parietal region. They put me on the chemo drug, Temodar, and I took that for a year. I take Trileptal for seizure prevention but I have had to increase the dose as I had a pretty tough one last September. I get MRI's every 3 months and my neurologist says I will probably have to have a surgery some day. My neuro-oncologist disagrees on the surgery issue so that leads me to believe that second opinions are good. I feel that I am being watched pretty closely and that is good. I don't want any big surprises. I have had enough little ones. There have been some subtle changes (e.g. minor growth, increases in density) along the way. In fact, I am back on Temodar right now and will probably take it again for a year. I am aware of the limited lifespan issues but it's pretty hard to drag that out of a doc. All they will tell you is that everyone is different. This website will not let you leave a phone number unless it is a private reply so I will send you a private reply with my number if you want to chat. Good luck to all of you.
by IamSecond on Fri Apr 13, 2012 06:26 AM
Hi everyone, I just joined this good group. I was diagnosed on Sept 2008, I was 36, after grand mal seizure. It was Oli II with deletions. It was on the side that affect my right motor so first 2 days after surgery on Oct 2008 at MD Anderson, I barely able to lift my right hand and my right foot was paralyzed from the hip down. I was active person so I determine to get back on my feet asap. After 8 days in hospitals w/ many therapies, I checked out with a weak right sides but able to walk with minor assistance. After a month later thru various physical therapy, I able to run even not as fast as before. Surgery was very successful. Neuro-surgeon said 98% removed while neuro oncology said 100%. Until now, I still left with minor imperfectionist with my fine motoric control. It feels akward when I try to write(right-handed) and when I run/walk fast up/down stairs, sometime I got tripped if I don't watch my steps. My right hand/foot occasionally gets clumpsy but can't complaint after what I've been thru. I never been in any treatment(radiation/chemo) since there's never been a need for one. So everything went well until 2011 I got a total of 7 seizures(local, always on my right hand/foot). MRI showing a slight brightness/increase of contrast around old area so my MRI become 2 months from 4 months. However subsequent MRIs still showing clear and no sign of changes whatsoever, not sure if that means a false alarm earlier. I'm glad but that doesn't explain the numerous seizures that I suddenly got last year. Before first seizure, I no longer take Keppra for almost 2 years without problem but now I'm taking it and the doze getting higher every time I got another episode.
I've been on 2000mg a day on Keppra but can't stand a side effect(drowsiness/fatigue, irritated/moody) and I'm a man and the sole breadwinner in my family. I've wife and two small kids so it's been hard to them when I get irritate so easily over small things. So now I take 1500mg Keppra and even though better but still hope that one day I don't have to take it at all.
My neuro-oncologyst explains that the seizure is due to tumor cells progression, which even though very slow growing but it's happening in a very sensitive area that affecting my right motorics and causing seizure on that part.
Progression is so slow and subtle so it can't even detected by MRI yet. Sometime is not easy to live knowing that something very slowly growing inside my brain and there's nothing we can do until it's 100% confirm by MRI one day, which maybe years from now.
However I believe everything happen for a reason and God is always in control. I'm gonna beat and outlive this thing. :) God is always good, no matter what.
by phoff29993 on Fri Apr 13, 2012 01:39 PM
Sounds like we have very similar situation; subtle progression with some minor seizure activity. I went about 6 years with no issues and then I had some minor seizures. My tumor is on the right side so all of my motor skill problems are on the left i.e. walking, writing when seizure activity starts (about two or three times a month). I am left handed. The seizures usually last abut 5 minutes. They have increased my dosage of Trileptal and it has helped. I took Keppra for a while. I didn't like the effects. It made me very moody and, to be honest, I was very edgy and not a nice person. Sounds like you are having similar effects. You may want to look into changing as there are nearly 10 medications that you can take that can have good results. I guess all the medications have their drawbacks. You just have to find out what works best for you. Good luck to you.
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