Oligodendroglioma

[Trigggl]

<u>Updated:</u> I felt the need to update this because it gives the wrong impression in a few places. I don't want anyone to take this as "gospel", just a snapshot of my experience and mindset at the time.

Well, I was pointed to this site by the changelog of Patrick Volkerding and his Slackware Linux Operating System. I just switched over to his Linux distrobution right before my severe fit of seizures came out of the blue one Sunday night. I was wondering why my eyes seemed to be trying to go out of alignment. I was getting no headaches. One moment I'm waking up from watching the movie "Big Fish". I realized it was 12:30 and it was way past time to go to bed to get ready for work in the morning. It had been a really great day. I remember starting off for bed. I was heading for the house alarm to set it to "stay". I was in the process of going to the bedroom.

EDIT: This is what it felt like. One moment I'm in the living room, the next I'm in the hospital with failing kidneys caused by the severe seizures I had.

I was waking up in the hospital with my wife holding my hand and explaining that I had really scared her. That was two days later. Suddenly, all of my family and friends were in the room. I was wondering how they all got there so fast from Dallas, Tulsa and St. Louis. It was so good to see everyone at the same time, that it didn't really even hit me that hard when my wife told me I had a tumor and the doctor needed to operate next week. "Let's get it done now and go home. Why the wait?" It still feels like someone flipped a switch and reality shifted. Did everything before I woke up in the hospital really happen. It's like I'm going from reading the book of Luke then reading Romans without ever experiencing the book of Acts. "Who is this Paul guy?-

EDIT: It was Luke that wrote Acts, the book that introduced Paul. Paul, of course, wrote Romans.

-How did I get to the hospital?" I didn't experience it or remember it. There are a few things that happened Sunday that I had no recollection of. It took me a while to remember any of it. When my wife was asking me about some of it, I didn't remember watching "Big Fish" at all. I didn't remember a group marriage counseling meeting where we watched a video. I remember the counseling video, now, but just a few scenes from "Big Fish". Well, I might have slept through some of it.

I am now on Dilantin for seizures, now. I haven't had a seizure, thankfully, since getting on the medicine. I had the operation and was informed that the tumor is a low grade oligodendroglioma. Beyond that, I somehow only heard what I wanted to hear. I heard that it was very treatable. I heard that it was slow growing. I heard that we would most likely be able to kill it altogether. I heard that if I was active, the side effects would be minimal.

EDIT: Take the following with a grain of salt. It's not a 10 year death sentence and I don't want to rob anyone of hope. This is just how I was feeling at the time and based on Google searches. A doctor will tell you that there are multiple treatments that can be tried and just because one may not work anymore, another one may. My most recent Neurosurgeon was not afraid to tell me that I could even live my full normal lifetime.

What I didn't hear is that the almost certain recurrence is not treatable, that the recurrence does not respond to the same treatment as the initial tumor. I just realized a week or two ago that I was on a 10 year death sentence. That hit me a little bit for something that I have been treated for for the past 5 months. I discussed it with my wife and got her crying again. At least now, since I understand the gravity of the situation, I adjusted my stratagy for 401K. I'm not on the long term plan anymore. I don't need to worry about what car I'm going to own after my school loans are paid off. I'm very glad I got life insurance a few months before my diagnosis. My family will be taken care of.

EDIT: I started living life again and I did buy my dream car, a Subaru Outback. In spite of the economy, my 401K is doing all right also. I managed to time the stock market bottom pretty well.

I'm now on the PCV plan. It should easily remove the initial tumor and I'll have a few good years of healthy living. My body is handling the Lomustine, Vincristine and Procarbazine very well and I'm staying active. My blood levels are in healthy ranges and the tumor is shrinking. The initial experience has removed from me most any fear of passing. It also seems to have removed some of my fear of living. This brain tumor to me is a gift. The world seems brighter and more full of color. I am now able to focus on the things that are important. I am starting to take more time to spend with friends and family. My unemotional father and brothers are starting to show more feeling and emotion. I am starting to show more feeling and emotion.

My family and church are praying for a complete healing, for the tumor to go away and never come back. I am hopeful that God will give me a complete healing, but I won't be upset if he doesn't. I have been given ten more years to live. I feel great. When the time comes, I'll be ready. Don't pray for me, pray for my family.

[leo]

Greg

Thank you so much for posting. I have just read a book about cancer patients, and the new meaning of life that some encounter seems wonderful. I wish more people had that experience without being diagnosed with cancer. I hope you find support and good people around this forum. I will be here if you need anything.

best regards,
Leo

[Trigggl]

This treatment is wearing my out. I need some prayers myself. I'm tired of getting the the Vincristine IV. It's getting harder for them to find my veins and with the expectation of many years left the Dr. doesn't want to put in a port yet. I'm tired of pumping my body with poison. It's getting harder to be grateful. I guess it was bound to happen. I need to find my second wind.

Well my blood levels are still in safe ranges. The WBC is the only low one. It's about 3.5 or so and holding.

Well, time to go engineer some airplanes. Don't worry, I only do business jets.

[dizzybuff38]

Hi Greg - just saw your posts - it is hard - I lost my twin brother to a brain tumour 9 years ago, don't know what kind as he wouldn't discuss it, at 50 yrs old he thought he could crack it. Well, his twin now has breast cancer, BUT I am going to crack it! My bc had spread before I had surgery, so not the best prognosis. You sound like a pretty with it guy and have the support of a loving wife and family. Be positive and smell the roses as I do now - we are a long time dead. Take solace in some of the wonderful people on this forum and of course Dr. Leo - what a saint to do this voluntarily for us whilst running an horrendous schedule as a Registrar ( oops, Resident in the Us).

Take care, you are in my prayers.
Liz.

[Trigggl]

Well, I did eventually get my second wind and I found a nurse who could find my vein every time. It's much easier to deal with when that trust is there. My wife would also hold my hand while they did it, so that was comforting as well.

Thursday the 10th of 2005, my oncologist advised me that I was getting my last treatment. The nurses and staff gave me a "Purple Heart Graduation Certificate" that they all signed. It's a weird feeling being that relieved when I know the next 4 days are going to be filled with the Vincristine side effects. Bring em on! The light at the end of the tunnel has arrived.

Thanks for all the prayers, and remember, none of us is out of the woods, so please remember me again in the prayers once in a while. After seeing how my wife was affected when our Oscar fish passed, I don't want to see what it looks like when she looses a person.

[michelesmith]

Trigggl,
Just want to congratulate you on finishing this round of treatment. I wish you the best of good times and days of feeling good. Treasure each moment. Your success gives everyone out here a little hope.

[brainman]

Greg, congratulations on finishing the chemo!!

If you have read any of my posts, you know that I am a 13 years and counting survivor of a glioma. I did have a recurrence this year and, yes, it is a little more aggressive. But with proper aggressive treatment, I should have another 7+ years before it returns. By then, there will be even newer treatments and I will have another x years? Although I am very much into survival statistics, I always remind myself that statistics are just that? statistics.

Greg, you sound like a very spiritual man. Draw strength from your spirituality. One of the first realizations I had was that those cancer cells were MY cells? just growing faster than normal. I tried visualizing the Light irradiating MY cancer. That may sound silly and un-scientific. But it has given my strength to continue on.

May the un-scientific Light shine on you, Greg.

[Lindsay]

Hello everyone,

My name is Lindsay and I am a 24 year old. I am married and recently moved to VA Beach to be with my husband who is in the navy.

A month ago I was diagnosed very surprisingly with a brain tumor (I had basically no symptoms). My craniotomy was on the 15th and I found out this past week that my neurosurgeon had lied to me when he told me that I had oligodendroglioma and that it was benign. When getting a 2nd opinion last Friday, I was told that oliogodendroglioma is always malignant. What I have is a combination of stage 1 and stage 2. The doctor who finally told me the truth told me that the average life span after diagnosis is 7 years. I will be honest with you and admit that I have been extremely depressed since finding out.

But, that being said, after reading this thread, I do feel some hope, especially from reading about Greg and brainman's experiences. I am so happy to know that someone managed to live 13 years after being diagnosed.

What can you all tell me about what I should expect from being on chemotherapy and radiation? Also have any of you taken part in any clinical trials? If so, what were they like? And lastly, have any of you been to Duke for treatment or consultation? That is where the oncologist where I live is sending me. I sure hope that they will accept me as a patient there.

Thank you in advance for taking the time to read my post and *hopefully* respond back to me. I am really scared right now and I hope to get some more hope from you all and to support you all as much as I can as well.

[BTsurvivor72]

... this past week that my neurosurgeon had lied to me when he told me that I had oligodendroglioma and that it was benign. When getting a 2nd opinion last Friday, I was told that oliogodendroglioma is always malignant. What I have is a combination of stage 1 and stage 2. What can you all tell me about what I should expect from being on chemotherapy and radiation? Also have any of you taken part in any clinical trials? If so, what were they like? And lastly, have any of you been to Duke for treatment or consultation?

Lindsay,
I'm hoping in the time that has elapsed since you've posted that you've been successful in answering your questions, and securing the appropriate treatment. Just in case, I'll post what I've learned... of course I'm not a doctor, just a survivor

The "good news" from what I've been told of benign Oligodendrogliomas is that they can be "cured" if the neurosurgeon can totally resect the tumor. If the tumor is in a critical area and can't be fully removed the doctor would probably give you the following options: 1) do nothing else, 2) follow-on treatment, typically with Temodar, since Oligodendroglioma tends to respond well to chemo, 3) Temodar with radiation therapy, or other treatment.

1. There are 4 grades of brain tumors according to the World Health Organization, grade 1 and 2 are benign, grade 3 is malignant, and grade 4 is aggressive. Usually, Oligodendroglioma comes 2 flavors, grade 2 (slow-growing, benign), and grade 3 (malignant or "anaplastic"). The higher the grade, the more rapidly tumor cells multiply and the more likely they are to spread into neighboring cells. A pathologist can tell exactly what type and grade of tumor it is, after reviewing a slide with a sample of your tumor under a microscope. Of course it's important to note that benign tumors do not mean "harmless", for two reasons:
1) benign tumors take up space inside the skull, can start to push against the brain, leading to Intra-Cranial Pressure (ICP) and other serious issues.
2) benign tumors if left unchecked have the potential to mutate into a more aggressive tumor (or they might just stay benign!)

2. I have experience with Temodar, Busulfan, Thiotepa chemo drugs. Temodar was mild and had very few side effects (little fatigue and nausea). The Busulfan and Thiotepa were given as part of Dr. Lauren Abrey's clinical trial "high dose chemo with stem cell rescue", at MSKCC in New York City. The treatment was pretty rough, but it was worth it in my case. IMHO the treatment should fit the tumor -- aggressive tumor = aggressive treatment.

Dr. Henry Friedman at Duke's Tisch BTC returned my phone call when I was shopping around for my best treatment alternative. From what I've been told Duke has a world class facility there, and solid treatment options -- you should be in good hands. North Carolina was too far for me

[Trigggl]

Lindsay,

I do hope you are doing well, and hopefully off of treatment by now. My treatment lasted a little over a year, so hopefully you are and just lost track of the forum like I did.

Sorry I wasn't around to help.

[brainman]

Greg, I am just glad to see you back and kicking . Hope you can hang with us for a very long time.

[Derek]

BT Survivor,
I think it is a little dangerous describing a Grade 2 Oligodendroglioma as "benign".
My research on the literature is that are almost invariably malignant, eventually increase in grade, and that the vast majority of sufferers will eventually die from their disease.
I am not a pessimist, but I have a scientific as well as surgical back-ground (I am a Veterinary Surgeon), and am a realist.
Surgical cures on Grade 2 gliomas, even with a complete resection, are rarely reported (obviously due to the diffuse and infiltrative nature of gliomas with no clear margins or boundaries).
If there are any Neurosurgeons out there maybe they can comment on the statistics of grade 2 glioma cures.
My wife's Medical Oncologist has given her a 6-9 year survival outcome from the time of diagnosis, and that's with the "Best of the bad bunch" gliomas - ie a Grade 2 Oligodendroglioma with 1p/19q Chromosome deletions. (Which responds favourably to Chemotherapy).
Statistics have to be taken with a grain of salt however, as there is a "Bell Curve" on survival statistics, which covers all permutations and combinations.
Medical science and surgical procedures can only improve with time.
Derek

[BTsurvivor72]

I agree with you Derek. Brain tumors, regardless of grade are dangerous and deadly. Perhaps the term "benign" shoud not apply to brain cancer. I'm a realist and an optimist, but it seems that I tend more towards the optimistic side. Would you at least agree that current science indicates gross total resection of lower grade gliomas does increase patient survival?

[Derek]

BT Survivor,
My wife's neurosurgeon stated that a total resection increased 5 year survival for a low grade glioma from around 50-60 % to around 80-90%.
Of course this is his empirical evidence only, but it appears this is generally true.
He gave a fairly low but possible chance of a cure. Only time will tell, but with severe complications, a total resection was not assured at the time in her case.
This information given was also before the Neurosurgeon etc knew exactly what the histopathological name and grade of the tumour was. (ie astrocytoma, oligodendroglioma or mixed glioma - oligoastrocytoma).
I don't know how this (surgery) affects 10 year survivals, but let's hope that they continue to improve and beyond.
Derek

[Trigggl]

When I was about to go to surgery, we convinced the surgeon to not go for it all. Some of it was very near my speech center and I could have also lost motor function on the right. I'm an engineer and I need as much of my brain as possible. I also took PCV for a year+. I also was on dilantin for quite a while. I've since switched to Lamictal. Apparently dilantin is hard on the liver and also teeth. Nobody starts on Lamictal because the dose must be increased slowly. A severe rash can develope if it is started too fast. It took about 5 weeks for me to get up to the full dose. One great thing about Lamictal is you don't need a blood test to check the level of it. Dilantin fluctuates in annoying ways and I don't like having to get stuck any more than I have to.

I'm due for another MRI in a couple of weeks. I'm always a little nervous when that time comes. I get to go see the oncologist this Thursday. yea.

I haven't heard anything that says a total resection helps anymore than the standard treatment of PCV. As has been said, the initial tumor is very treatable. My neurosurgeon only took out enough for the biopsy. Chemo was used to treat the rest. Now I just try to live my life. I don't think about it all that much and I'm too busy at work to dwell on it.

My neurosurgeon is impressed with how I'm able to use complex computer programs at work and people even come to me with help on them from time to time. I probably like computers a little too much. I work on them for the sake of working on them. I use Linux on all of my computers at home, some of which aren't Intel based.

With the exception of the hard to swallow Lamical pills, life is good.

Well, back to work,