New here with AA III

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New here with AA III

by noodle85 on Mon Feb 18, 2013 11:24 AM

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I guess, I feel the need to finally vent or maybe connect with someone in a some what of a similar situation. It has been roughly a 2 1/2 month process of me finding out about my diag. Don't know wear to really start, so I guess I'll start with posting my story and see what comes from that. I'll start with my early symptoms that I ignored (mild seizures) for nearly 3 years, thinking that it was do to past rec. drug use or maybe just stress with work and birth of my wonderful son. He came along with his own health complications due to having downs. That has been a hard road on its own and we are still struggling to get his complications taken care of. Just because I'm so worried about him because I'm daddy, I am going to stray off my subject for a little bit and talk, gloat , and just be the proud dad that I am, and tell his story first because he always comes first. My son was born with downs., which originally was no big deal. I grew up with a friend who's brother had downs. And he Is a great kid. So I had great outlook on the situation origanilly. I say originally because being young and un-informed about the full situation on downs. Kids, that it more than a mental state. He was born 1/16/09 by emergency c- section due o2 complications, and that's was when he was rushed to a more equipped hospital. That is when we recieved conformation on the downs, and with the downs comes with a complete av canal defect. Operable at the time, but the took the watch and wait approach. But we're told surgery will be needed in between age of 6 months to 3 yrs. A year later we travel to another hospital for a heart cath. And possible surgery. That is when he was also diagnosed with severe pulmonary hypertension. So that delayed his heart surgery. For further details on my wonderful son or if you just want to see the happiest face in the world. You can go to www.gofundme.com /ShaneheartsBoston. Now back on the whole stupid brain tumor subject. I was ignorantly self diagnosing my self. Thinking it was stress "dizzy spells " and not seizures for 3 yrs. Didn't read into it to much. You know, mid- twenties state of mind,feeling invincible. Until this past November and "spells " started becoming more frequent and more intense. So I say okay maybe, I've been drinking a little to much lately. So I quit drinking right away, cold turkey. Didn't feel improvement. So stop drinking my usuall four pack a day of red bull.no improvement. So I went to the ER for dizzy spells and chest pains. Spent 2 days in a inpatient detox hospital and left with a diagnoses of anxiety and depression. Sorry I have to cut this short but I will be back on later to vent some more got to get the boy ready for school and I am going for a second opinion for myself today. Might be why I've been on the Internet instead of sleeping Thank you a head of time for any messages of hope

RE: New here with AA III

by noodle85 on Mon Feb 18, 2013 02:46 PM

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On Feb 18, 2013 11:24 AM noodle85 wrote:

I guess, I feel the need to finally vent or maybe connect with someone in a some what of a similar situation. It has been roughly a 2 1/2 month process of me finding out about my diag. Don't know wear to really start, so I guess I'll start with posting my story and see what comes from that. I'll start with my early symptoms that I ignored (mild seizures) for nearly 3 years, thinking that it was do to past rec. drug use or maybe just stress with work and birth of my wonderful son. He came along with his own health complications due to having downs. That has been a hard road on its own and we are still struggling to get his complications taken care of. Just because I'm so worried about him because I'm daddy, I am going to stray off my subject for a little bit and talk, gloat , and just be the proud dad that I am, and tell his story first because he always comes first. My son was born with downs., which originally was no big deal. I grew up with a friend who's brother had downs. And he Is a great kid. So I had great outlook on the situation origanilly. I say originally because being young and un-informed about the full situation on downs. Kids, that it more than a mental state. He was born 1/16/09 by emergency c- section due o2 complications, and that's was when he was rushed to a more equipped hospital. That is when we recieved conformation on the downs, and with the downs comes with a complete av canal defect. Operable at the time, but the took the watch and wait approach. But we're told surgery will be needed in between age of 6 months to 3 yrs. A year later we travel to another hospital for a heart cath. And possible surgery. That is when he was also diagnosed with severe pulmonary hypertension. So that delayed his heart surgery. For further details on my wonderful son or if you just want to see the happiest face in the world. You can go to www.gofundme.com "" target="_blank" rel="nofollow">http://www.gofundme.com " target="_blank" rel="nofollow">www.gofundme.com /ShaneheartsBoston. Now back on the whole stupid brain tumor subject. I was ignorantly self diagnosing my self. Thinking it was stress "dizzy spells " and not seizures for 3 yrs. Didn't read into it to much. You know, mid- twenties state of mind,feeling invincible. Until this past November and "spells " started becoming more frequent and more intense. So I say okay maybe, I've been drinking a little to much lately. So I quit drinking right away, cold turkey. Didn't feel improvement. So stop drinking my usuall four pack a day of red bull.no "" target="_blank" rel="nofollow">http://bull.no " target="_blank" rel="nofollow">bull.no improvement. So I went to the ER for dizzy spells and chest pains. Spent 2 days in a inpatient detox hospital and left with a diagnoses of anxiety and depression. Sorry I have to cut this short but I will be back on later to vent some more got to get the boy ready for school and I am going for a second opinion for myself today. Might be why I've been on the Internet instead of sleeping Thank you a head of time for any messages of hope
Back again, So, from where I left off from before. I was leaving the hospital with alc. wd,s/ anx./ and depr. The thing about the detox, I believe it was all in my head. I only had maybe one beer a day. Maybe, two weeks after leaving the hospital I had my first and only grand mal seizure. While I was trying to walk off anxiety attacks/ siezures(not a good idea to try to walk off your siezures), I was witnessed by a beach patrol officer( in whom I'd still would like to thank) and I was rushed by evac to local hospital-had MRI- "mass"found right temp. Lobe-was transferred to the same hospital my son spent his first three months of life at, and then it was confirmed as a tumor and was scheduled for craniotomy on 12/12/12 (no pun intended lol). Surgery went well, there was little concern from the N.S. That he might of took the function out of my left side, but all is well so far from surgery. Still, I have numbness feeling on the surgical side. Tumor ended up being the size of a grapefruit. I was in intensive care for only two days and then sent home for recovery. I was told they should have the biopsy report back the day after my discharge, tried to get results day of and ended up with no result. Two days later, still no results. Then came time for my stitches to be removed(standard 2 weeks). I asked my N.S. about the results of the biopsy and recieved no result. It was almost a month after surgery/ biopsy until I recieved the results from my pathology report. I had to find out on my own by going to the records dept. at the hospital and pay $58 extra to get the news that I have stage three brain cancer( I know it's not a gbm)at the age of 27. I don't know about any of y'all but I think that is something your doctor should tell you. Currently, starting my fourth week of radiation. No chemo yet,(got to take care of dental health) just started losing my hair at the radiation site. Should be starting chemo Wednesday "a little nervous", but optimistic. Right now I'm waiting on the dr. At md Anderson for the second opinion. Wondering how this is going to go, but again staying optimistic.

RE: New here with AA III

by siblingof on Mon Feb 18, 2013 11:46 PM

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That's pretty strange about nobody bothering to tell you you had a grade 3 astrocytoma. I'm glad you're going to MD Anderson for a 2nd opinion.

RE: New here with AA III

by noodle85 on Tue Feb 19, 2013 12:49 AM

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Thank you siblingof, I thought it was pretty strange myself. I thought I was all alone thinking it was strange that nobody told me my diagnosis. Until today, at my appointment for a second opinion. I basically saw the dr.s jaws drop when I told them the same thing. My appointment went fairly well. They had there share of opinions,both good and bad about my current treatment.

RE: New here with AA III

by mollie924 on Tue Feb 19, 2013 01:47 AM

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My husband was diagnosed with AA III in Jan, 2011. He went through chemo and radiation.  Finished temodar in May 2012. His latest MRI was 2/14/2013.  He is stable, no recurrence and living life like he did before his diagnois.  You have your young age on your side. Hope this helps.

RE: New here with AA III

by noodle85 on Tue Feb 19, 2013 03:38 AM

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Thank you mollie, That does help greatly. That is great news on your v-day MRI. Hope that you two had a great day. I haven't started my Temodar yet, but I'm on my fourth week of radiation. I start Temodar on Monday, N.O wants me to start avastin soon after. On the other hand, at my second opinion today. That N.O suggested avastin as a back up in case of recurrence. Kind of a little confused after that but I defently will have some Q's for the R.O. Tomorrow. Go to see N.O next tues. Yes, all the dr.s keep telling me I'm young I should be grateful. I kind of have mixed feelings on that particular wording. But I do look at it optimistically and I am going to give this thing in my head no reason to live . Like I said earlier my son is number one and he is going to need is dad.

RE: New here with AA III

by siblingof on Tue Feb 19, 2013 01:54 PM

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I can only speak of glioblastoma (AA IV, a step up from what you have) but with glioblastoma the standard treatment has been to leave Avastin as the backup for recurrence, though there has been a recent study which found that putting Avastin into the first treatment round helped. However I don't know what the research says in re AA III and Avastin at initial diagnosis.

RE: New here with AA III

by noodle85 on Tue Feb 19, 2013 03:49 PM

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I believe that my N.O. Is using my young age, to take the " everything and the kitchen sink" , approach at it. That might be the reason why he is so quick to give me the avastin with just a AA III. He also talked about getting me involved with the novacur

RE: New here with AA III

by mollie924 on Tue Feb 19, 2013 05:43 PM

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I don't know what is the latest opinion is about starting Avastin right after temodar either but a year ago our NO had suggested continuing on the temodar for another year.  My husband was tired of being on the temodar and wanted a break.  A NO I consulted with at Mass General thought it was a good idea to take a break from temodar also and restart it if the MRI's show a recurrence. I had read that the tumor will mutate when on the temodar for long period of time and the temodar will not be effective and also there is the possiblity of myleodysplastic syndrome (same thing as Robin Roberts developed after her cancer treatment for breast cancer). Go for a 3rd opinion.

RE: New here with AA III

by noodle85 on Wed Feb 20, 2013 02:49 AM

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Do to me needing wisdom teeth to be pulled, my NO suggested to hold off of on the temador until after my dental needs were taken care of. The NO at M.D said that he probably would have proceeded with the temador regardless of the extractions or not . It made sense to me that my main NO suggested to hold off on chemo until after my extractions given the risk of bleeding. So I am on the start of fourth week of radiation and no chemo yet. Keeping fingers crossed that I could be among the few that responds greatly to the radiation and have no need for temador at all, but that's me keeping my hopes at there highest. I was under the impression that MD Anderson was tops, for a second opinion. My other options for another opinion would be either stands hospital at university of fl or the moffit center in Tampa. Any suggestions?
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