Grade III Oligodendroglioma & Temodol

DAWAT · New User Joined: 12 Sep 2006 Posts: 8

Hi,
We have a very close friend who was recently diagnosed with a grade III Oligodendroglioma. He underwent surgery in early Aug (they were able to remove 80% of the tumor at that time). The next treatment is Chemotherapy - Temodol (5 days on 23 off). Does anyone have any experience with this grade and type of tumor and treatment with Temodol. He is young 43 and otherwise healthy.

Everyone here seems to provide so much insight and support...any info you have would be appreciated.

Thanks

BTsurvivor72 · Regular Joined: 30 Oct 2006 Posts: 10

I'm pretty familiar with the tumor, and with Temodar. Temodar's the standard treatment these days for "Oligos" (with or without Radiation, depends on the doc). Temodar's mild, just a little fatigue and nausea, and it's a pill! Since it wasn't a total resection (20% of tumor remaining), and it's aggressive (Grade III), I'm curious to know whether you're planning on radiation or other therapy after your course of Temodar, or are you kinda in "wait and see" mode to see if it finishes the tumor off. Let us know how well it works out!

DAWAT · New User Joined: 12 Sep 2006 Posts: 8

thank you for your response...doesn't seem to be many people with experience in this area....I shared your response with KNMF...who happens to be the friend I am talking about in my post....
do you have a "Oli" (as I call it...easier to pronounce) tumor...??

BTsurvivor72 · Regular Joined: 30 Oct 2006 Posts: 10

I had an Anaplastic Oligodendroglioma (aka "Oligo" or "Oli" to us mortals). I had it surgically removed, had the 6 months of the milder chemo (Temodar) and a "grand finale" of high-dose chemo w/ stem cell rescue to regenerate the depressed immune system caused by the high-dose chemo. Feeling much better now and I'm actually looking forward to my next MRI and clean bill of health Very Happy

By participating in a "high-dose chemo / stem-cell rescue" clinical trial I'm hoping to avoid the need for radiation therapy, since Oligos (particularly those with 1p & 19q chromosome deletions) respond well to chemo. Chemo side effects, while harsh, tend to be temporary. Of course I might have done something different if my surgeon wasn't able to remove the entire tumor.

Miraculous thing about this is that I never had any symptoms. I never would've known I had this large egg in my head if they didn't find it on a CT scan of my sinuses (I had developed an unrelated snoring problem!) Often people find out about a brain tumor once the symptoms surface.

All the best to your friend -- will be in my prayers.

DAWAT · New User Joined: 12 Sep 2006 Posts: 8

Hi again!

Thanks so much for sharing...it is very encouraging to read survivor stories!
KNMF has just completed his 2nd round of Temodor, I believe he does another round before they do another MRI...the next step (I think the option of radiation combined with the temodor etc) depends on the results of that MRI? From what I have read aggressive treatment is the way to go with tumors of this nature...by the way his has the 1p & 19q chromosome deletions as well. His tumor was identified by a CT Scan as well ordered as a result of symptoms...seizures etc. it was the size of an egg..left frontal lobe.

Anyhow, thanks again...for sharing and for your prayers.

M

KNMF · New User Joined: 28 Sep 2006 Posts: 5

The is "Temodal" not "Temodar". It is taken for 5 days before bed on an empty stomach in pill form and then I take just my other meds to preven seizures for 23 days. I have taken 2 rounds so far and the first mornng I throw up once or twice and the rest of the time it is just Nausea and fatigue. These symptems last about 7 days. I have joined a gym to improve my health in the 23 days of not taking the Temodal. My dose is 400 MG per day and will be on it for at least 6 months.
Luck to all
KNMF

becky3k · New User Joined: 06 Nov 2006 Posts: 3

HI, I too have this type of cancer. I have been taking Temodar for the past 7 months. I will be taking my 8th 'round' beginning this Wed. My schedule is also 5 days on, 23 days off. Followed by a MRI every 3 months.
My tumor is inoperable, as it's a part of my brain, as my neurosurgeon says, and not seperate from it. After my 3 month MRI, it did show slight shrinkage. My 6 month MRI, showed little to no shrinkage. The size of mine is 3 inches long, 1 1/2 inches wide and 1 inch deep.
I am a 46 year old single Mother of 3 young children. I work full time, and since taking chemo I have only missed 1 day of work due to, what I have termed, the VVV's, (the very violent vomitings) Rolling Eyes

For the most part the chemo treatments are mild, compared to the horror stories I had heard. I chose to not listen, and become completely deaf to anything 'bad' people wanted to say about this cancer or treatment.
I have been fortunate enough not to lose my hair, or too much weight. I am able to keep up with almost everything I did prior to diagnosis.
During the 5 days of chemo, the first couple of days make me very ill, which I work very hard at trying to talk myself out of. Day 3 through 5 are just days which make me feel like I want to be sick. The week following chemo, is when the fatigue sets in. Week 3 and 4, I'm pretty much back to normal.
I have learned there is a beauty in cancer. Sounds crazy, I know! Wink

But when I see others so inspired by how I'm handling my treatments, it inspires me to see them being touched by God through me. I'm not a religious person at all, but I am very spiritual. So to see God using me to touch others, is a blessing in itself.
When others ask "why me", I ask "why not me?" I would so much rather it be me, than my children, or my family. Or what if you had absolutely no one is this world, to share the experience with you? Now that would be a sad, sad thing. I thank God for giving me the strength and wisdom to see the beauty in this thing called cancer.
I didn't mean to carry on so much, but this topic was one I could really relate with. Try hard not to look for the bad in this disease, but look for the ways, it HAS made your life brighter.
God Bless!
Becky

BTsurvivor72 · Regular Joined: 30 Oct 2006 Posts: 10

Becky,
If you don't mind my asking... where specifically is the tumor located? Also, did you get a 2nd opinion on whether it's inoperable from a neurosurgeon at a regional brain tumor center? Whenever I hear "it's inoperable" I have to ask the question. I know somebody who had a difficult brain tumor, and a less experienced neurosurgeon said he couldn't operate. However a better neurosurgeon was able to get at least most of it out, putting him in a much better position for follow-up radiation and chemo. Lastly, have you explored precision radiation options, such as the "Cyberknife"?
I'm always happy to hear of people that deal with cancer by focusing on the positives. I know it's difficult, especially being surrounded by so much negative... but your faith in God will get you through. Peace be with you!

becky3k · New User Joined: 06 Nov 2006 Posts: 3

Hi BT,
Thank you so much for the response, as well as the info, you were so kind to send. My neurosurgeon, is the best in the biz. Or so I'm told by those in the biz, for this area. He is a professor of neurosurgery. Although a second opinion is never a bad idea.
At this time, my neurosurgeon, is kind of out of the picture, with the oncologist being the main health provider. I spoke with my oncologist today, and his response was, at this time, chemo is all I need since I do have the 1p and 19q chromosome deletion. Very positive, I guess, if indeed you have to have a brain tumor. He said that since there is the positive side effects from these chromosomes, that he would keep radiation until a later date, if need be.
It's is my understanding from him, that if the cells would change to another type of cancer, ie: astrocytoma, or one of the many others, then at that time, they would have to consier radiation, surgery, etc.
I asked him what would cause these cells to change, and he said that that's just what brain tumors do. That they really have no idea of what causes them to change cell types.
I finally was brave enough to ask medium survival times with this type of tumor, and was told that as long as the cells do not change, we are talking 7 to 10 years. If the cells do change to astros, or any other, than we are talking a shorter time. I said wait, I need longer, my kids are still very young. *grins* He said well to be honest with me, I would have to have a lot of luck on my side to have that happen. Of course, I cried my heart out, on the way home, but then I realized, I don't need luck, I just need my faith! Very Happy

It's my understanding, that with any brain tumor, they will absolutely come back. So they try to keep another option open, for then, such as radiation, surgery, cyber knife. Is that your understanding as well?
I don't know if people usually write this much in forums, as this is the first time, I've ever joined a cancer forum. But I do find a relief of sorts, knowing I'm not the only one to have had to deal with this.
God bless,
Becky

becky3k · New User Joined: 06 Nov 2006 Posts: 3

Oh shoot BT, I had a chemo moment there. I forgot to mention that my tumor is in the right frontal lobe.

BTsurvivor72 · Regular Joined: 30 Oct 2006 Posts: 10

To quote my neurosurgeon: brain tumors and real estate are all about "location, location, location!" I'm not a surgeon but it from what you're saying the tumor's a decent size, and it's in an important region (see http://www.neuroskills.com/tbi/bfrontal.shtml ). Based on that it seems like a reasonable course of action to try to shrink the tumor as much as possible with chemo. Now, is the hope that making it smaller will make radiation treatment or surgery possible? Or are you planning to leave it there and wait and see? Have you been symptomatic? In any event, I hope that the Temodar knocks it down a few sizes for you -- keep us posted.

BTsurvivor72 · Regular Joined: 30 Oct 2006 Posts: 10

Becky,
Just to finish addressing the rest of your post... Smile

When talking about survival times it's important to know that statistics are just statistics. Everyone's different and there are many factors that weigh into an individual's survival. The tumor's type, size, grade, location, and operability, as well as the individual's age, diet, physical condition, and spirit are all part of the equation. I knew a man who had a 4 month cancer progression from symptoms to death. I also know a 10+ year multiple brain tumor survivor, and two 10+ year Stage IV Lymphoma survivors. Each one of these survivors had things in common... they took charge of their illness, were aggressive and relentless with their treatments, and took care of themselves on multiple levels.

Like you, I too want to be around for my family for a long time. To ensure this happens I did everything I possibly could to understand my enemy, identify my best treatment alternative, and change the things about myself that I could. I know there's still more I can do to improve myself, but I'm optimistic, well, assured really, that the tumor won't be back. I pray that someday you can know that for yourself Smile

KNMF · New User Joined: 28 Sep 2006 Posts: 5

Hi Becky, I am Knmf and my name is Steve. I to have 3 children and am 43 years old. My wife has been hugely supportive and for that I am gratefull. I have the same Tumor as you and have had 80% of the tumor removed. I have had three rounds of the same Chemo and am currently scheduled for an MRI to measure the remaining 20% on December 11th. I will know the results by Jan 8th. Have you had any seizures and how did you discover that you had the tumor? The tumor I had was very similar in size to yours but was in the left frontal lobe of my head, between the gray and white matter. I have joined a gym for the 23 days that I am not on Chemo and this really makes me feel better. Find what make you happy and just do it. Oh ya, kiss and hug your kids.
Luck to you
Steve

dimension · New User Joined: 30 Jan 2007 Posts: 1

My story…new here..

I too have an “Oli” grade 2, left frontal lobe, 1p 19q deletion that was thankfully able to be completed resected (or so I’m told) and am now two years out with MRI’s every 6 months.

First symptom was a grand mal seizure on Dec. 13th 2004 at 27 years old, married with one son (two now) and surgery was scheduled 5 days later at Stanford Hospital. The Neuro-oncologist recommended no chemo or radiation and a “wait and see” approach, so I am waiting…

I am on Keppra for seizure control (thankfully I have only experienced the one). As a result of the surgery I struggle daily with my communication skills (mostly verbal) and I have my moments where I can not find the right word but overall I feel extremely lucky.

My struggle is with my support group…

My heart goes out to everyone on this board. I sometimes feel it is easier to have this disease than to be close to someone that has it….

Peace,
Josh

KNMF · New User Joined: 28 Sep 2006 Posts: 5

Demension, you are lucky not to be on the Chemo or radiation. You will probably be off the seizure meds shortly as will. Looks like you got lucky.
Keep up the good spirits.
KNMF

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