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Anaplastic Oligodendroglioma Grade III

sadinholland
Posts: 237
Joined: Apr 2011

Has anyone had to go on 21 days of temodar? This is the second round for my husband and I whaven't read anywhere on this site anyone taking it for 21 days. They tell us now that he is doing 21 days, he will never go back to 5 days. They saw something on his last MRI that they said could be from the radiation he had ( 6weeks of it) or it could be something forming so they changed the dosage just in case. This is his 8 round of chemo,second of the 21 day dosage. If there is anyone else that has had to do this please post. I would like to know what to expect.

Thanks!

sadinholland
Posts: 237
Joined: Apr 2011

Has anyone here had to go on 21days of temodar?

panormitis
Posts: 16
Joined: May 2011

My husband took 6 weeks non stop temodar together with radiation. then after a stop of 10 weeks ( as we went abroad ) he started to take 5 days temodar again and 23 days none, this was repeated for 6 months. Now they found something new on his brain and do not know yet if this is necrosis or another tumor. If it is another tumor they might try targeted chemo on him. I am trying to find out who has experience with targeted chemo. btw not all tumors are the same and there for they will get different treatment? My husband has got gbm grade 4.

wishing you luck,

Hetty,
p.s. why are you "sad in holland" because I am a Dutch in Holland and very sad, but full of hope as well, as I do not want to get crazy and try to look into all the possible treatments for my husband.

sadinholland
Posts: 237
Joined: Apr 2011

My husband started out with the 5 days until they saw something on his MRI in April. They said they aren't sure if it is something or just effects from the radiation. He did the 33 treatments of radiation and chemo and then rested for 30days. His is a grade 3 anaplastic oligodendroglima. They did say they did not think it was a tumor though, something about not seeing any blood or something to that fact, don't have the notes in front of me. I need all the help I can get with understanding what is going on!

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

Hi, Sadinholland.

My 26 year old son David is two years out from a diagnosis of grade three anaplastic oligodendroglioma. He's doing the 5 days on, 23 days off of Temodar. He is doing really, really well and we thank God all the time for David's continued good progress.

Did your husband have surgery before he underwent radiation? How long ago did he do the radiation? When we had the first MRI after David finished the radiation treatments (6 weeks worth), our oncologist and radiologist both cautioned us that the MRI might look a little scary--they said it might look worse than before the radiation. The radiation could make the surgery site look like there was a problem---possible tumor growth. I was glad that they warned us. There was a white ring around the cavity where the tumor had been before they removed it during brain surgery. The doctors weren't sure what that white area was and they said that they would watch it. They didn't think that it was a tumor because it didn't show up any differently with the contrasting agent that they put in David's blood for the MRI. They guessed that it was either calcification, scar tissue, a hematoma, or some sort of fluid. No one ever mentioned the words, "radiation necrosis." I'm guessing that necrosis doesn't usually show up that fast after radiation---but I'm just guessing.

Every MRI since then has shown a steady progression of what the doctors say is a healing process. The white ring keeps getting smaller and smaller. It's been a slow but steady process. It's been two years and that spot is still in the process of getting smaller.

The thing your doctors said about not seeing any blood....I don't know what that might mean, but I remember that one of the identifying characteristics of an anaplastic oligodendroglioma is the "presence of 'chicken wire' vasculature." I'm not sure if I spelled that right...but I know what it means. It means that oligodendogliomas, like other tumors, need a large blood supply to feed the tumor and make it grow. So I am guessing that "not seeing any blood" is a good thing. I know that it's so hard to remember everything when you are under this kind of stress, but please ask your doctor what that means. I had to keep a notebook with me all the time so I could jot things down to ask the doctor because I could barely remember anything from one minute to the next. Stress plays havoc with the ability to concentrate and remember!

Did your husband have a FISH evaluation done on his tumor? I don't know a lot about that evaluation---my understanding is that it looks at the genetic makeup of the tumor. David had that evaluation done and they told him that he did not have the gene deletions that make his tumor type more susceptible to chemo. One doctor told us that it cut David's chances in half. When we got that report back, our doctor STRONGLY recommended that David do both chemo and radiation. Before that report, he told us that we could do either chemo or radiation, but we didn't have to do both. I wonder if he expected David to have the deletions.....anyway, apparently the Temodar is doing its job because after two years, there is still no sign whatsoever of tumor growth--thank God!

Thinking back on when David first started having headaches and was first diagnosed....it was bad news on top of bad news and then worse news. Every time we talked to a doctor, we heard things that were harder and more negative. It started out with "he may have a tumor" to "he has a tumor" to "brain surgery--it has to come out now" then "it's benign and David will not need any treatment after surgery" to "it's not benign" to "his median life expectancy is 3 to 5 years" to "no gene deletions" to "it could be two years"......we really got hammered. I cannot believe how far we have come in those two years.

I always try so hard to be positive and to post about how good David is doing. But sometimes I find myself so scared, wondering if I will be on this site, posting about a recurrence. I wonder if I am in denial and it is inevitable. When I think like that, I get physically limp and weak. It's so destructive and makes me a miserable wreck. I have to fight the feeling and fight against being terrified. I feel like such a loser because I allow myself to think like that when my son is the one who is fighting brain cancer and he never complains or shows any signs of fear, and never shows a moment of doubt that he will beat this. I never tell him about my fears but he's pretty intuitive. But I am very good at putting on a positive, brave face.

Sometimes my faith is so appallingly weak. But today our pastor said something that really made me think. He said that sometimes we think that God's grace means we get a free pass on the dumb or bad things that we do--that we don't pay a price or suffer a consequence brought on by our failings. But he said that God's grace is what makes us able to walk the hard road--to have a strength beyond our own, to face and get through the really hard things in life. I really need that grace.

Anyway....please hold on to hope. I will be praying for you and your husband. Please be sure to post updates on this site. :)

Love and blessings,
Cindy

sadinholland
Posts: 237
Joined: Apr 2011

Hello Cindy,

I know exactly how you feel. I do believe in God and I know he doesn't put any more on us than we can bear. Sometimes I feel like I am losing it and at the same time, feel like what right do I have when my husband is the one going through all of this and he is being so strong. I never let him see me upset but I am so messed up right now! I cry, I eat too much, I worry, I can't sleep!

He had surgery and then 33 weeks of radiation and chemo. Then he was off everything for one month. After that, they put him on the 5 day cycle. He had no 1p but 19p deletion. After being on the 5day for 4 months, we went in for his 2 month mri and that's when they told us they see someting that may just be effects of the radiation or something else. They changed his chemo to 21days because they were not sure if something was growing.We go on June 7 for another mri.

My husband is just like your son, he has not doubt, at leaast not showing it, that he is going to beat this thing, although the doctors said 3-5 years. I am constantly worring. He is doing great though. Working, driving, doing things around the house! Thank you Lord!!!
It's just this not knowing that I am having a difficult time handling. He never had a seizure, he had headaches and vision problems. The doctor kept saying it was his blood pressure. A brain tumor NEVER came to mind for any of us!! The doc did say what you said about the blood issue and the tumor so I guess that is a good thing they didn't see any. My thing is why increase the chemo if you don't see the blood issue???? I guess to be on the safe side. At the same time, that chemo kills a lot of good cells and has some bad side effects down the road.

My husband doesn't allow me to ask questions at the doctor's appts. I have before and he got so angry and said if I ever do again, he will not allow me back with him. He said it's his illness, not mine. So I just sit there quiet and often confused. I hear on theses message boards about personality changes, my husband has been so sweet and caring. Not that he wasn't before, he was but nothing like he is now. Has anyone ever ex[eroemced this? I too will continue to keep your family and son in my prayers. I love posting, it's a good way to get your feelings out there. Take care and thanks for sharing!

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

My sister has GBM. I have gone with her to mostly everything. Im a chemo nurse my self so there are a lot of questions that I dont ask. But it seems like anything I said about this she looks at me as if I know nothing. But then the doctor says it and she acts like its the first time she heard it. THe GBM is new to me, but chemo , blood, platlets low counts etc... is what I do.
Im trying really hard to do just what she wants me to, which isnt much.. We are sisters but dont fight at all. She is my very best friend, and I dont even know what is say half the time.

sadinholland
Posts: 237
Joined: Apr 2011

I get so upset that I can't ask questions, after all, I love him and I want to help him in any way I can but if I can't ask questions, I don't know what I may need to look for, other than what I read. Just like this enhancement, I wanted so much to ask more but he would not let me. Sometimes I feel lost.

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Im sorry,sometimes what you read is so much worse than what might be going on with him. Every case is diffrent.Is he asking questions? Most of the time people only ask the questions that they are able to answer and the doctor doesnt offer you more.

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