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Need help -Oligodendroglioma Grade 3

scorpio79
Posts: 25
Joined: Nov 2012

Hi I am new to this so not sure if I am posting in the right place...I have been visiting this site every now and then and I see that everyone wants to help each other..I am hoping to find some help too...my brother in law 28 years old was diagnosed with Oligodendroglioma Grade 3...he was doing just fine after his craniotomy for the past 1 year...last month he got a seizure and he was admitted to the hospital and he has been there since then..he has been getting many many seizures and the doctor is unable to figure out the reason...the MRI reports are clean...no tumor...we are clueless and at loss...i would like to consider a second opinion...anyone knows about a specialist for this monster disease...Thanks

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Scorpio,

I'm so sorry that your brother in law is fighting an oligodendroglioma. My son was diagnosed at age 25 (2 months shorts of his 26th birthday) with an anaplastic (grade three) oligodendroglioma and he died on Oct. 15th. He was 29. I hate telling you this because I know it is discouraging, to say the least. But please know that every tumor is unique to the person who has it, and where one treatment won't help one person, that same treatment will work for another person. Oligodendrogliomas are tricky and unpredictable.

You asked if anyone knew about a specialist for this disease....is your brother in law being seen by a specialist? Who is reading his MRIs? I ask this because we received very conflicting reports on MRIs when the doctors in the ER read an MRI and then our neuro oncologist read it. I highly recommend being treated by a neuro oncologist. Maybe your brother in law is seeing a specialistis, and you just wanted the name of another one?

I've heard good things about Dr. Friedman at Duke University. I called him regarding my son's situation, and even though we ended up not going to Duke, I really appreciated his taking the time to talk with me, and I loved his positive, fighting attitude. He also was very much against giving median life expectancies, for which I was grateful. I know a guy who was diagnosed with an astrocytoma the same time as my son, and he is being treated at Duke, and he's doing great.

I also liked and respected the doctors at UCSF. David was treated by Dr. Neuwelt at OHSU (Oregon Health Sciences University) and he is definitely an expert. I trust him and recommend him, even though he was unable to help David beat cancer. You might try NCI at NIH. That's the National Cancer Institute at the National Institutes of Health (government facilities) in Maryland. They do clinical trials but they may be able to help you or refer you to a specialist.

There are a lot of things that can cause seizures. Has your brother in law been referred to a seizure specialist? Medications, changes in blood chemistry, necrosis, swelling, infections.....there are so many triggers. David's initial seizures were caused by more tumor growth, but subsequent seizures showed a correlation with infections. He had a cold---he'd have a seizure. He had a shingles outbreak---he had a seizure. He had to take an antibiotic----it lowered his seizure threshold and triggered a seizure so long and violent that the doctors called a code blue. (Thank God David was in the hospital when he had that seizure.)

Anyway, I hope and pray that your brother in law can get on top of his seizure issue. I know from going through them with my son that they are terrifying and incredibly difficult to live with. Please be aggressive in helping your brother in law to get help with controlling them.

Love and blessings,
Cindy in Salem, Oregon

scorpio79
Posts: 25
Joined: Nov 2012

Hi Cindy

Thankyou so much for the quick reply...i am very sorry to hear about David...I have read your blogs and followed it and my heart breaks to know what happened...you are right about this being very unique...we are at a loss because he is being treated by oncologist and neurologist..the seizure he had 2 days back was very severe and he has been unconscious for 2 days...the doctors are unable to figure out the reason as they say the MRI's are clean and no regrowth of the tumor...they are suspecting TB Meningitis as he was admitted to the hospital with severe coughing and cold...he is on antibiotics but it does not seem to work....he was detected with Oligodendroglioma grade 2 when he was 22 and the doctor was very sure that this will be cured...his tumor showed up again when he was 26 ...he has been through 3 craniotomy and he does not have the 1P 19Q deletions...the doctors are trying everything...my Brother in law is not in the US but I would like to get a second opinion...

Medicines dont seem to work..he is fighting very hard but the seizures just keep recurring

If it is not the tumor we are not sure whats causing this...Would you know from your experience if this is possible...Can I get the contact number of Dr. Friedman to get some input..would he be willing to look at his reports...Thankyou so much for your support and help...

I had one more question the doctors have not mentioned anything about disease progression is that a possibility even if there is no regrowth..i am sorry to bother you with so many questions...

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Dear Scorpio,

Here's the contact info that I found online for Dr. Friedman:

Duke University Medical Center
047 Baker House, Trent Drive
DUMC Box 3624
Durham, NC 27710
Tel: (919) 684-5301
Fax: (919) 681-1697
Email: henry.friedman@duke.edu

Be sure it's Henry Friedman, not Allen Friedman that you contact. They have two Dr. Friedmans at Duke.

If you would like to read more about Dr. Henry Friedman, you can google his name and Duke University and you will find lots of links. I watched an interview with him on CNN on youtube. Very interesting.....

I was really impressed that a renowned doctor of his stature, with so many demands on his time, would take the time to personally call me and talk to me about my son. I wonder if things would have been different if we had gone to Duke for treatment. I'll never know and I guess there's no point in torturing myself now with the "what ifs"...

I don't know if Dr. Friedman can help with your brother in law's seizure issues but it won't hurt to contact him. You never know who will know whom, and where help might come from. If you can't get ahold of Dr.Friedman by phone (but I think you can), you could try writing a direct, to-the-point email. I don't know if he has the time to read through a long case history but if you are brief and to the point, he may be able to respond quickly.

It's appalling and terrible to read about your brother in law's seizures. I cannot imagine having so many seizures, having the doctors unable to help, and seeing him unconscious for two days after that really bad seizure. My heart breaks for him and for you and for your family. David's seizures were so terrifying to me and they left me an emotional wreck each time.....I feared and dreaded and HATED them as much as any other aspect of brain cancer.

David's seizure doctor told me a lot of stuff that made me almost crazy with worry. He was an expert but he was sure dumb about the things he told us. But I think he really knew a lot about seizures. He worked at NIH and was part of the team that developed Keppra. Has your brother in law been given Keppra and/or Gabapentin to control his seizures? A combination of those two drugs helped David, though he was never completely seizure free. They lessened the frequency of his seizures and they seemed to lessen the strength of them too. But I don't know for sure...they may have seemed lessened because David was generally so weak that he didn't have the muscle or the ability to move much, and that may have made his seizures seem less...violent. I don't know....

Our seizure doctor told us about a condition called "status epilepticus." It's when a seizure continues without stopping. He told us that he had a patient who had been seizing without stopping. He had her heavily sedated--totally unconscious for three weeks, and she did not have seizure activity but he didn't know what her condition would be when she was weaned off the sedation. I didn't know there was such a thing as "status epilepticus" and I was terrified that David would develop it. But I think it's a relatively rare condition. I'm only mentioning it to you because I wanted to let you know that apparently there are ways to treat ongoing seizure activity. But there are so very many, many variables with seizures...the causes and effects, and how they can be safely treated, and how the treatment for seizures can affect other aspects of brain tumor treatments and symptoms...it's a nightmare.

You asked me if I would know from my experience if it is possible that the tumor is not causing the seizures....I don't know. I think it's really tricky to know what causes seizures. Our seizure doctor said so many things could cause seizures. I believe that having had a tumor makes you more likely to have seizures, even if you do not have a visible tumor at this present moment in time. But I am just a mother of a son who fought brain cancer. I'm no expert, I've never worked in the medical field, I'm not highly educated or anything...I'm just drawing on my first-hand experience and what I learned from our fight with brain cancer and our experiences with seizures.

You also asked me if there could be disease progression even with no regrowth....I don't know how to answer that. Disease progression is regrowth. I'm afraid that there could be progression (regrowth) that did not show up on an MRI. One of the reasons we sought treatment at OHSU was because of their super, state-of-the-art MRI machine. They also had highly trained specialists who read the MRIs. That's why I asked you who was reading your brother in law's MRIs. We had a doctor in ER tell us that David's MRI was stable and we were so thrilled...until later that evening when the oncology resident read the MRI and told us that the tumor had actually crossed over into the other hemisphere of David's brain....I think it's very important that someone who is highly trained is reading the MRIs.

You also mentioned the possibility of meningitis, severe coughing, and a cold. And that he is on an antibiotic. We were told by several doctors and our seizure specialist that any one of those factors could trigger seizures. Please be sure to ask about the antibiotic that your brother in law is getting...ask them if it can lower your brother's seizure threshold. This is a very important question. I learned this the hard way. David had a blood infection and an abscess. The infectious disease doctor wanted to treat them aggressively so David could resume chemo ASAP. David had a terrible grand mal seizure in the hospital from that antibiotic because it lowered his seizure threshold. He was in the bathroom when it started and I found him on the floor, seizing. I pulled the red emergency cord and screamed for help. They dragged him naked from the bathroom and doctors came running from everywhere. They did CPR and gave him a shot in his chest and called a code blue and loaded him on a stretcher and literally ran with him to ICU. I stayed with him in ICU and the next morning, I heard the ER doctor telling a group of residents out in the hall that David was a prime example of why "you residents do your own homework and know drug interactions and side effects and never rely on someone else, like the pharmacist or infectious disease doctor." After that, I started looking up every drug that David took, and I read up on every side effect and every contraindicators for other drugs etc. I asked a million questions every time they switched a drug or a dosage amount. Even the greatest doctors make dumb mistakes. So please make sure that the antibiotic your brother in law does not have any likelihood of lowering his seizure threshold.

What country is your brother in law living in? I hope he's in a place that has exceptionally good medical care. I hope that he is getting every chance, every treatment, the best of everything, to help him in his battle. Fighting brain cancer since he was 22....it breaks my heart. I pray all the time that someday, somewhere, someone will find a cure and that no one will never ever have to suffer with cancer of any kind, ever again.

Please keep me updated on your brother in law's condition. I'm praying for him. And please don't ever feel like you are bothering me with any questions or anything at all. I would do anything in my power to help you and your brother in law.

Love and blessings,
Cindy in Salem, OR

scorpio79
Posts: 25
Joined: Nov 2012

Hi Cindy

You can call me D...I appreciate you giving me the contact numbers...for the past 2 days he has not got seizures but he has not been conscious either..the doctors are just not able to figure but they are treating him for TB...he is just in an Unconscious state..he moves his limbs and opens his eyes once a while but does not look straight..he is not talking...

He is located in India and he is getting all the best treatment possible and I am pretty sure there must be better treatment somewhere else but at this point I dont think we can move him anywhere...he has had 3 craniotomy so far ....the most frustrating thing is that he was doing so perfectly well 1 month ago...talking and working out ..happy....everything changed overnite and I have no idea what I can do to help..he is like my little brother and I have seen him grow...He had never even fallen ill ever in his life...very healthy and strong...no idea how he got this monster disease thats eating him away

Me and my husband feel very helpless...Wish I can help reduce the pain and I hope he does not realize what he is going through...I know i am saying a lot of things...

I tried calling Duke University but i was not able to get hold of anyone..I just left a message..I hope someone will call back...Probably not until the holidays ...I dont know how long this is going to go on with him being in the hospital...he just does not seems to improve..I wonder if it is all the pills he is taking all the seizure medication that doing this to him...i am just not sure..i have done a lot of research and like you said its all different...

Not sure where to go from here... Not looking forward to these holidays...

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