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Anaplastic Olio Grade 3

sadinholland
Posts: 229
Joined: Apr 2011

Could anyone please tell me what the long term effects are fromt demodar and radiation? My husband's doctor didnt' give us a choice as to not to do one or the other. We did get 2 opinions about the results and surgery but not about the treatment. We just assumed it was what any doc would have told us to do since they said it was the common treatment for this type of tumor. My husband appears to be doing well. He did confide in me this past weekend that he has some memory problems. I also noticed him balling his hands into a fist and releasing them, as if they were falling asleep or cramping. He doesn't like for me to question him about things. He says if something is wrong, he will tell me and not to ask. Any direction or information about this type of tumor is greatly appreciated. He is now taking 21day cycle of temodar. I have not noticed any effects from his radiation or chemo thus far. Is there ALWAYS a side effect? Is it just a matter of time? He had no 1p deletion but 19q deletion he did have.

huxley2006
Posts: 25
Joined: Oct 2010

Location of the tumor has a lot to do with the side effects. Do you know where it was located? Did he have a gross total resection? Is he on Dex?

sadinholland
Posts: 229
Joined: Apr 2011

He is not on dex and is tumor was a gross total resection located within the left temporoparietal lope. It was s 6.5cm X 4 cm mass.

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

My son has the same diagnosis....anaplastic oligodendroglioma. No gene deletions at all. He had surgery with a total resection, did 6 weeks of radiation and chemo, and is now on the 21 day cycle of temodar. He took dexamethazone (msp?) during recovery from surgery and during radiation.

His side effects are short term memory issues, difficulty concentrating, some headaches. These side effects lessen considerably when he is not taking Temodar. He also has stomach problems. We don't know what is causing the stomach issues.

Overall, the side effects are unpleasant but totally tolerable, especially when you read about the side effects from other forms of chemo. And of course we are so very grateful that David is alive and here with us and he is enjoying a great life.

He is 2 years out from his diagnosis date with no signs of any recurrence. Thank you, God.

Love and blessings,
Cindy

sadinholland
Posts: 229
Joined: Apr 2011

My husband did the 6 weeks fo chemo and radiation too. He had been on the 5 day chemo unitl they so something on his MRI that MIGHT be something or it may be effects of the treatments. Why did they put your son on the 21 day cycle? They told us he would be on chemo for 12 months. Has your son been on chemo for the whole 2 years? If so why?

And I am with you 100%--Thank you God, for allowing us to still have our loved ones with us!

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

Hello!

David's doctor told us initially that David would be on Temodar for the rest of his life. I wonder if they said that because they didn't expect him to live very long? When I asked more questions, they said that the longest they would keep David on Temodar would most likely be two years. That was two years ago. Now when I asked at the last MRI appt. (about 3 months ago) if the remaining tumor cells would come out of their "sleeping state" and develop into full blown tumors once David stopped taking Temodar, the doctor said that we should wait and see how David does. He said that he would keep David on Temodar for as long as seven years, if David was willing to continue to take it and he was able to tolerate it.

We had a new development last night. David had a seizure in his sleep. He didn't know that he had one until he woke up this am with a big chunk bitten out of the side of his tongue. He also had some other signs that he had had a seizure. He called his dr and they are going to review his last MRI and see if they missed anything, and they want him to call the dr office when the full staff is in on Tuesday. David is being very strong about it, but he said that it is "very discouraging." I am trying not to think of all the bad things that it could be, but I am having a hard time. David has done so well for a long time but it sure doesn't take much for me to feel all the fear and dread come swooping up and engulfing me. I know that all of you on this website have experienced the same feelings.

I'm going to head to bed where I can be weak and cry my head off and not worry about upsetting anyone else in my family. Then I'll pray hard like I do every night and tomorrow I'll get up and go forward. But right now---I am scared.

Love and blessings,
Cindy in Salem, OR

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

I just re-read your post and I don't think I really answered it very well. I'm sorry!

David's dr. put David on the 21 day regiment because he believes in treating anaplastic oligodendroglioma aggressively. And we told him that we wanted to fight it with everything they had. The dr. also said that because David did not have any of the gene deletions, he really needed to do the chemo and radiation together, and then take chemo afterwards. Did your husband's FISH evaluation show whether or not he had the gene deletions? If he did, it would mean that his tumor type is more sensitive to chemo and that the chemo would work better for him.

One thing that has been hard for us is the big difference in all the doctors' opinions on what kinds of treatments are necessary. We had one dr tell us NOT to do chemo and radiation, and then another dr tell us that we really, really needed to do both. I think that some of the treatment options are just up to whatever a particular doctor thinks will work the best. Scary...but really, it's not in the doctor's hands--it's in God's hands. I trust God a million times more than the doctors anyway, no matter what the long term outcome is....

Love and blessings,
Cindy

sadinholland
Posts: 229
Joined: Apr 2011

My husband had the 19q deletion but not the 1p. I am with you. I am trusting God! He did the chemo and radiation as well, we were told if my husband wanted to live he needed to do both so we did both.

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

Cindy-My son (27 on 6/29) had a Grand Mal seizure on Tuesday, 6/27. They did an MRI at the hospital and another tumor has been found in a different area of his brain. After his Radiation in November/2010 ended they decided not to do Temodar. February his scans came back "Cancer-Free". (The doctor's words....) Insurance chose the follow-up doctor for the radiation oncology and it was not at the Emory University where we had hoped to get treatment. Lesson learned, hopefully not too late. We are going to be more aggressive with this tumor and demand care from the team of Brain specialists at Emory where we started our journey.

Currently, the Emory neuro-surgeon says by sight it looks like a Grade IV Anaplastic Astrocytoma and recommends a biopsy to open the door for some clinical studies for treatment. My son and his new wife will be meeting with them on Tuesday 7/5 to determine a treatment plan.

They are strong. I am faltering but will be meeting this head on. God is carrying us through the next phase.

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

Hi, Woodsymom.

I saw your post last night on a thread called "Oligodendroglioma" created by Sybille on 4/30/2004. You had posted about the change in your son's status and I replied to that post. It's hard for me sometimes on this site to find a previous thread....

I was heartsick to hear about your son's seizure and the MRI results. Being a mom with a son so close to your son's age, with the same original diagnosis, I have some idea of how devasting this news must be to you and your son and his wife and your whole family.

You said that the Emory neuro-surgeon says by sight it looks like AA4 and he recommends a biopsy. So it hasn't been confirmed as an AA4 yet? I will be praying that it is a lesser grade or a different kind of tumor. Can the doctor do a resection and biospy instead of a biopsy alone? I guess you will find out some of these answers after your son's appointment tomorrow.

Brain cancers are beyond bad, but I believe that God does miracles and some people beat it and live way beyond the doctor's opinions and predictions. I will continue to pray very hard for you and your son and your family. Grace, peace, and strength to you.

Love and blessings,
Cindy in Salem, OR

sadinholland
Posts: 229
Joined: Apr 2011

I am praying for everyone here on this site. Lean on God and hold on, be strong.

sadinholland
Posts: 229
Joined: Apr 2011

Cindy,

I am so sorry to hear about David and his seizure. My husband has never had one but I am always afraid that he may. You sound so much like me, so scared, going to bed and crying and praying,hoping nobody will hear. Trying to be strong for everyone and breaking all apart on the inside. Know that I am praying for David and your family. Lean on the Lord, as you have been. Remember, He doesn't put anymore on us than we can bear, we just feel like it sometimes. I pray that you will get good results from the doctors. Love and blessings to to as well!! You are not alone, we here understand and are with you in spirit.

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