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Newly diagnosed with Anaplastic Oligodendroglimas grade III

Thomascd71
Posts: 3
Joined: Jun 2009

Just recently dx with this type of brain cancer. Had surgery on June 1st, where the neurosurgeon was able to remove 80 to 85% of the tumor. Thanks to God, my recovery has been nothing short of miraculous, as I have not had any neurlogical affects from the surgery and my doctor had prepared me to probably spend most of the summer in rehab as he thought that with as much of my brain as they had to remove I would probably suffer from some sort of neruo problems on the left side of my body. I woke from surgery with everything functioning as it should. I start radiation and chemotherpy this coming monday. I will be taking Temodar. I would like to hear from anyone who has had this type of brain cancer and when if ever life has returned to normal.

Anonymous user (not verified)

Congratulations! It is so refreshing to hear a story of someone doing so well. I'm so happy that your treatment has been so successful.
I'm sorry, I don't have experience with this type of cancer.
I was actually hoping you might be able to explain something to me. This might seem niave but could you explain what Temodar is?
Thank you so much and I hope that you are doing well!!
♥mk

Thomascd71
Posts: 3
Joined: Jun 2009

From what i understand Temodar which is the Brand name, is especially for Brain cancers and has only been approved by the FDA in the past year. I have only been taking it a week and the Dr prescribed an anti-nausea medication which i have to take an hour before the temodar, and so far i have not experienced any nausa side effects.

Catresa

annetuck
Posts: 2
Joined: Jul 2009

Hi Thomas,
My husband Richard was diagnosed in Feb 08 with the same grade as you & he to had 80% removed, he came round from surgery fantastic, he only had problems for the first 4 days when his brain was healing & he was quite agressive, when he went home he basically went back to doing everything at home he did before, we were all shocked that he was so good, due to not being able to drive he could not go back to work for 5 months & that was only because of the job he did, he worked on cranes so it was a safety issue. Other than being really tierd which is to be expected I think the more positive you are the better you will be, my husband is the most positive person I know he believes he will beat this thing & it will not stop him doing anything he did before he was diagnosed. Within 4 months he was back doing kickboxing & going to the gym. Everyone is different, my husband was lucky & I hope you will be just as lucky, as I said being positive helps him & to look at him you would not even know other than him hardly having any hair that he has a brain tumor. So good luck & keep well, I hope you return to normal soon.

Anne

PBJ Austin
Posts: 347
Joined: Mar 2009

From what I've reading you've done very well so far and you've left the doctors scratching thier heads, so there's no reason to believe you won't continue to beat the odds. :-)

My sister takes Temedor for her Anaplastic Astrocytoma and she has had few if any side effects. She said the radiaiton was worse but Temedor really isn't bad.

Wishing you the best for your continued improvement.

jillybean0517
Posts: 2
Joined: Jul 2009

Hi, Your story is pretty much mine. My surgery was May 22, 2009, same dx. I have yet to start tx of chemo and radiation (financial costs of temodor). I, too have no neurological defects. I previously had surgery for this tumor back in 2000, so 9 yrs of no signs is pretty good. I wish you continued good health and happiness, because life as you have known it will not be the same, but pretty darn close to it!

Thomascd71
Posts: 3
Joined: Jun 2009

If you go to the Temodar website it actually has information from the maker of the medicine in which they help patients get the medication they need. I am glad to hear such a success story.

Catresa

mark h
Posts: 1
Joined: Jul 2009

Hi thomas , I was diagnosed with the same exact type of tumor as you ( left frontal lobe ) 8 years ago and knock on wood I have been in remission ever since. I was treated at sloan kettering in nyc by chief of neurosurgery Philip Gutin radiation therapy under the care of dr lancford chong and followed closely by neuro oncologist dr. lauren abrey. I took temodar for 8 mos and the only real side effects that I experienced were some neasua and feeling tired. I did develop a seizure disorder as a result of the surgery but it is under control and I am able to drive and function normally. I certainly was terrified before each step of my treatment and still get anxious before my follow up mri's but I would say that I live a healthy normal life. I hope that this info helps you and if there is anything else that I can help you with my email is mrhutter@optonline.net. Many people helped me and I wish you the very best of luck ( believe it or not Cancer made me a better person )
mark

aeh
Posts: 1
Joined: Jul 2009

My sister was diagnosed at the end of February after suffering a seizure (while driving). She was not injured in the accident, but the news of the tumor was devastating to all of us. She is 42 and has been healthy. She did complain of headaches for the past two years and we came to find out, used a TON of SPLENDA (like nine packets a day) Anyway, she had surgery five days later (it was located in her right temporal lobe) and they were able to resect the entire tumor without her having any deficits. She recovered quickly and started concurrent radiation and chemo (temador) five weeks after her surgery and lost hair just where the radiation was given. She was tired, but did very well. She is now taking Temodar five days on, three weeks off at a much higher dose. She has very little side effects and is resuming life. She will have to remain on Keppra (an anti seizure med) for her entire life to prevent any seizures. We were told that despite having the tumor removed, 50% of all patients will still have seizures. There have been many blessings along the way and i have read that the median prognosis is seventeen years. Initially we saw five years, but after seeing "17", i am not doing as much research. Temodar has been around for about seven years and a wonderful drug as it is a pill that does not cause hair loss of any major nausea. Best of luck with your treatment and keep the faith- God can do anything!

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