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Post by exodus152 on Apr 24, 2013 19:48:20 GMT -6
Hey, I was diagnosed in 1980 at age 20 with a grade 3 astrocytoma (tumors from sacral to C5). Had chemo, radiation and 9 surgeries (3 to close leaking dura due to radiation). No reoccurance since 1985, just long term side effects of radiation. Still have had a full life. How about you?
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Post by JosephGallo on Apr 24, 2013 22:32:30 GMT -6
I'm glad to here from you. I have been unable to find anyone in a similar situation. I'm 53 years old and had surgery Jan 2012 to remove my tumor (t12 area). Had 6 weeks of radiation with low dose of Temodar. Have been using Temodar (chemotherapy) since (5 days on 23 days off). My last MRI Showed a re-occurrence and formation of a cyst. I'm scheduled for a new MRI next week following 8 weeks straight of Temodar (lower dose).. Do you have any deficits? I have been very lucky so far. I have weekness in my left leg, with pain and numbness in my left ankle and foot.
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Post by exodus152 on Apr 25, 2013 16:03:33 GMT -6
I'm 53 also (we must be our birth year's quota). Yes, some serious deficits- C5 quad, but caused by surgeries to remove (laser was experimental in '83/85) and 2400 rads of radiation ('80). I know they have come a long way from my "inoperable" 1980 diagnosis and '83/85 "last resort" surgeries and chemo. Doc (a world class golden hand) told me his theory was the surgeries may be causing tumor formation so we just quit in 1985 and nothing- no more deficits except long term radiation effects. Just a God thing.
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Post by Mallory on Apr 25, 2013 17:44:33 GMT -6
I to am a young woman I am 26 and I had an intramedullary arstrocytoma removed from my C1 to C4. I have been looking for people who have gone through this to talk to. So if you would like to chat I would love to.
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Post by Mallory on Apr 25, 2013 17:47:53 GMT -6
Hi, I'm a 25 year old female just diagnosed with an intramedullary astrocytoma of the cervical spine. I'm currently obtaining a second opinion. I would appreciate anyone sharing their experiences or advice. I can be emailed at mallorypiggott@hotmail.com Thanks!
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Post by Mallory on Apr 25, 2013 17:54:59 GMT -6
I to am a young woman I am 26 and I had an intramedullary arstrocytoma removed from my C1 to C4. I have been looking for people who have gone through this to talk to. So if you would like to chat I would love to. Kayleem - I am a 25 year old female just diagnosed with an intramedullary astrocytoma of the cervical spine...any advice? Feel free to email me at mallorypiggott@hotmail.com Thanks!
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Post by exodus152 on Apr 25, 2013 19:09:34 GMT -6
My best medical advice would be quoting my head nurse- find the best (skilled and knowledgable) surgeon you can. She said there are about 50 "golden hands" in the world- teaching docs. I had one at Ohio State in the 1980's...no regrets and best results, info, and care I'd start with the name hospitals if you can get there. Do your research (family and friends to help)- my Uncle checked with friend docs at Cleveland Clinic & Mayo who both said "save airfare, you've got one of the best". Very comforting when it gets tough/complications- and you can trust the team. It's worth a road trip!
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Post by a wife on Jun 21, 2013 10:52:30 GMT -6
My husband had a grade 2 spinal cord astrocytoma 23 years ago..He had surgery and then 32 weeks of radiation and is doing fine.I am so thank-full that he is doing this great for so many years.I sure wish he was in practice but sadly his surgeon retired now.I just wanted to post that you can survive many years with this.
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Post by gr8ful1 on Jul 31, 2013 13:46:58 GMT -6
I've posted on here before (in the general section as someone advised it's seen more often), but I want to give this section a try:-).
My husband is 46 years old. He had surgery in September 1998 to remove an astrocytoma (T11-L2) which unfortunately left him paralyzed from the waist down. Back then we were both young and naive and didn't even think to get a second opinion. Medical technology wasn't as awesome as it is now too.
Long story short - he's had a myriad of issues as a paraplegic -- and he had recurrences in 2003, 2007, 2009 and 2012. He's taken Temodar, VP-16 (etopiside), Camptosar and Avastin. He wants to quit everything except the Avastin. The neuro-oncologist he sees has been with him since 1998, although he mainly handles brain tumors. I don't know what grade the tumor is now, but the doc has referred to it as malignant (although as I understand it, these tumors will never go outside his central nervous system).
I have hope to read how some of you are survivors of more than 20 years. Some of the information found on the internet has much lower survival rates. I want to support him in his decision to stop the Camptosar (chemo) and just take the Avastin (biologic), plus there's conflicting information on whether chemo even helps astrocytomas. He did have shrinkage from the last tumor found in December of 2012, but the NO attributes that to the radiation he had. My husband has had the most radiation his body can handle at this point (according to both the radiation oncologist and NO). He's running out of options at this point.
His NO advised that taking the Avastin can still be a good thing, because it can kill the blood vessels feeding the tumor, but also said it will be important to keep close tabs on his urine because too much protein in the urine can cause issues. He started Avastin in April of 2012. He has to take blood pressure medicine because Avastin causes high blood pressure.
I just keep searching on the internet for answers. But I'm not really sure why since my husband doesn't really want to do anything else at this point except the Avastin. Does Dr. Jallo give advice? I don't know if sending an MRI would make a difference or not at this point.
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Post by Hannah Granata on Apr 29, 2014 0:31:20 GMT -6
I had surgery for mine located in the thoracic spine November of 2012. It's been a hard recovery, but I am doing well now. I am so thankful for my surgeon and wouldn't trust anyone else with such a delicate surgery. I still have cysts running throughout my entire spine. Anyone else have those?
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