Oligodendroglioma Level Ii

I sent a message last night to everyone that has
the same problem and wants to discuss it with me, because I am the same. the email is
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monsef ( mark )

I had an oligo grade II that was removed in 1999. I was informed of a recurrance in November '07 that my doctor says is probably the same type of tumor. They did not want to do surgery, this time. I am planning, at this point, to start Temodar along with nutritional therapy (from Utah - I know some have written about getting help from this doctor) in the next month. I would be very interested in hearing from anyone who has taken Temodar for a low grade tumor. I feel fine aside from the anxiety. Sandysinger

 

On 2/2/2008 Sandysinger wrote:

I had an oligo grade II that was removed in 1999. I was informed of a recurrance in November '07 that my doctor says is probably the same type of tumor. They did not want to do surgery, this time. I am planning, at this point, to start Temodar along with nutritional therapy (from Utah - I know some have written about getting help from this doctor) in the next month. I would be very interested in hearing from anyone who has taken Temodar for a low grade tumor. I feel fine aside from the anxiety. Sandysinger

My husband was misdiagonsed for 18 months (they thought his seizures were spasmodic torticollis) and when he finally had a grand mal seizure they found an oligo grade II (the size of a golf ball 2cm?, left frontal lobe).  It was completely resected in june '01 however, it recurred in aug 07(12 mm?grade II with slightly grade III signs on the edges?).  This time it really knocked him down...numbness on right side, weak and some blurred vision.  It was considered inoperabel even though they did do surgery to get a biopsy.  He has the 1p and 19q chromosome deletions and so he went on temodar.  Funny thing is after three rounds the mri showed no real improvement however, no increase in size.  Now, he has finished his 6th round and will have an mri on the 14th of may.  The oncologist said that if there was no change, then he would stop temodar and do a wait and see stance before trying radiation. I was under the impression that chromosome deletions were a good thing and chemo sensitive.  So, that is our story in a nutshell.  By the way, he had his first resection at the Univ of Utah med ctr and now we live in Boise, so the second was done here.  Let me know how you far.  It seems you had a longer period of time between recurrences.  Would you mind sharing with me the location and the other particulars, deletions, your age etc.?  My husband is now 45.

On 5/1/2008 RodLisa84 wrote:

 

On 2/2/2008 Sandysinger wrote:

I had an oligo grade II that was removed in 1999. I was informed of a recurrance in November '07 that my doctor says is probably the same type of tumor. They did not want to do surgery, this time. I am planning, at this point, to start Temodar along with nutritional therapy (from Utah - I know some have written about getting help from this doctor) in the next month. I would be very interested in hearing from anyone who has taken Temodar for a low grade tumor. I feel fine aside from the anxiety. Sandysinger

My husband was misdiagonsed for 18 months (they thought his seizures were spasmodic torticollis) and when he finally had a grand mal seizure they found an oligo grade II (the size of a golf ball 2cm?, left frontal lobe).  It was completely resected in june '01 however, it recurred in aug 07(12 mm?grade II with slightly grade III signs on the edges?).  This time it really knocked him down...numbness on right side, weak and some blurred vision.  It was considered inoperabel even though they did do surgery to get a biopsy.  He has the 1p and 19q chromosome deletions and so he went on temodar.  Funny thing is after three rounds the mri showed no real improvement however, no increase in size.  Now, he has finished his 6th round and will have an mri on the 14th of may.  The oncologist said that if there was no change, then he would stop temodar and do a wait and see stance before trying radiation. I was under the impression that chromosome deletions were a good thing and chemo sensitive.  So, that is our story in a nutshell.  By the way, he had his first resection at the Univ of Utah med ctr and now we live in Boise, so the second was done here.  Let me know how you far.  It seems you had a longer period of time between recurrences.  Would you mind sharing with me the location and the other particulars, deletions, your age etc.?  My husband is now 45.

I am 54 now. Am doing alright now that I have completed three months on Temodar. I am told I will be stopping after six months, July, as well. Was also told not to expect change in the tumor very soon (by one doctor). Seems good that your husband's was not showing growth. Mine did not show growth from October to January, so I am quite hopeful, since I had not really begun Temodar yet. I just had an MRI this week; get results on Monday. My tumor is in the right, medial, frontal lobe. They also say there is some spreading across the corpus callosum noted in the MRI. I'm not sure I understand this. I am working with the University of Michigan neuro-oncologist for my Temodar direction. I am on Trileptal for seizures. That is unfortunate that they misdiagnosed your husband at first. I was in surgery within four days after my first seizure episode. I am most hopeful about my nutritional assistance from Jeanne Wallace of Utah. Together with the Temodar I am anticipating the best. Thanks for your note. SandySinger

You are probably well on your way with your Temodar treatment and I hope you are doing well.  I was diagnosed with a right parietal T2 Oligo in Nov 04.  I am also on Trileptal for seizures. I was on Temodar from Jan 05 to Jan 06.  I followed the treatment regimen to the letter, making sure I took it on any empty stomach.  I thought it had a bit of an aftertaste; a little bit like metal, but nothing that made me sick or anything.  I also took a pill called Kytril to prevent nausea.  It must have been effective because I was never nauseous and went to work every day during the treatment.  My biggest complaint was constipation.  I tried to drink a lot of water, took softeners and a fiber supplement, but it was still a big pain in the .... (you get the message).

 Hope all is well.  Keep fighting.

On 5/21/2008 phoff29993 wrote:

You are probably well on your way with your Temodar treatment and I hope you are doing well.  I was diagnosed with a right parietal T2 Oligo in Nov 04.  I am also on Trileptal for seizures. I was on Temodar from Jan 05 to Jan 06.  I followed the treatment regimen to the letter, making sure I took it on any empty stomach.  I thought it had a bit of an aftertaste; a little bit like metal, but nothing that made me sick or anything.  I also took a pill called Kytril to prevent nausea.  It must have been effective because I was never nauseous and went to work every day during the treatment.  My biggest complaint was constipation.  I tried to drink a lot of water, took softeners and a fiber supplement, but it was still a big pain in the .... (you get the message).

 Hope all is well.  Keep fighting.

Thanks for your note. That's wonderful that you did so well on Temodar. I'm afraid I've had a little bit harder time, but making it through alright. I've had some fatigue and definitely constipation. That is pretty major. My nutritionist's suggestions have been helpful, I think, for the side effects; but I do have nausea also - especially toward the end of the week and later. I am only going to be on Temodar for six months. I use Zofran for nausea and vomiting - but another medication resulted in virtually NO help before I got on Zofran. I vomited several times in as many hours, on my first day of Temodar. Awful! (So, I know it's strong medicine!!) I just finished my fourth month on Temodar. (So glad I'm stopping after six!) So, are your MRI's looking better, or what has been the effect of the year on Temodar? Are they planning other treatment?

 

On 5/21/2008 Sandysinger wrote:

 

On 5/21/2008 phoff29993 wrote:

You are probably well on your way with your Temodar treatment and I hope you are doing well.  I was diagnosed with a right parietal T2 Oligo in Nov 04.  I am also on Trileptal for seizures. I was on Temodar from Jan 05 to Jan 06.  I followed the treatment regimen to the letter, making sure I took it on any empty stomach.  I thought it had a bit of an aftertaste; a little bit like metal, but nothing that made me sick or anything.  I also took a pill called Kytril to prevent nausea.  It must have been effective because I was never nauseous and went to work every day during the treatment.  My biggest complaint was constipation.  I tried to drink a lot of water, took softeners and a fiber supplement, but it was still a big pain in the .... (you get the message).

 Hope all is well.  Keep fighting.

Sorry to hear that things haven't gone smoothly during your Temodar treatments.  For the price of that stuff (I presume you have some drug coverage) things should go better.  Also, they ought to give us a bottle of Louis XVI as a little extra.  The day after I finished the monthly treatments I was looking for a little reward.  While I did not have any nausea during mine, I will tell you that, psychologically, they did get tougher to swallow each month.  I took them for 5 days each month.  The first day I could get them down in about 5 minutes.  By the 5th day it was more like 20-30  minutes.

In regards to your question about future treatments, I am definitely in a monitoring phase right now.  I have quarterly MRI's.  Fortunately,  my doctor says that they have all been "stable."  Initially, I thought that there would be some shrinkage in the Oligo.  I apparently misunderstood.  They were looking for stability and that is what we have gotten.  My next appointment is June 6. My doctor said that my body would know if "something was up."  He has said in that past that should changes occur, the treatment response will likely be "more Temodar."  Ultimately, there may have to be a surgical response.  The tumor is right on the edge and pretty accessible.  The last treatment would be radiation but they seem to want to hold off on that as long as possible.  Apparently, it can have an effect on your IQ.  I don't know about you but I need all the points I can get.  Beyond that, I try to work out every day.  Walking and weights.  I'm going to be 59 next month so it's not like I'm looking to make the Olympic team and, as far as I know, there isn't a pre-geriatric team.  Can't lose an ounce, but my wife is Italian and a great cook and they say that red wine has other medicinal benfits.  I have been waiting to hit the jackpot on one of my other bad habits, and when they said that red wine was good for your heart there was no chance that I was going to challenge it.

You may know that Dr. Bernadine Healy, a cardiologist, forrmer director of the Red Cross and wife of the former CEO of the Cleveland Clinic (where I get my treatment) has an anaplastic Oligo.  She was diagnosed in 1999.  I saw her on TV shortly after Katrina and she looked like a million bucks.  I have made here my poster child.  She has a book out about cancer called 'Living Time....' I read some of it.  You may want to check it out if you like that kind of stuff.  A little too much reality for me.  For me, I just got my youngest out of college a couple of weeks ago and, the next day, watched him run the Cincinnati Marathon.  It was welcome relief from all of those dreams I had when he was in college that the only running he was doing was from the cops.  Now that's living!

Sorry for the long winded response.  I know that this is probably not good some day.  Some day, however, is not TODAY.

 

Thanks for your note. That's wonderful that you did so well on Temodar. I'm afraid I've had a little bit harder time, but making it through alright. I've had some fatigue and definitely constipation. That is pretty major. My nutritionist's suggestions have been helpful, I think, for the side effects; but I do have nausea also - especially toward the end of the week and later. I am only going to be on Temodar for six months. I use Zofran for nausea and vomiting - but another medication resulted in virtually NO help before I got on Zofran. I vomited several times in as many hours, on my first day of Temodar. Awful! (So, I know it's strong medicine!!) I just finished my fourth month on Temodar. (So glad I'm stopping after six!) So, are your MRI's looking better, or what has been the effect of the year on Temodar? Are they planning other treatment?