Connecting with Others

23 Yr. old male recently diagnosed with a brain tumor (HELP!!!)

Ortega1602 — Sat, 14 Apr 2012 17:11:29 GMT

I am a 23 year old male and I have been active on the fire department, local ambulance company, and work at Sears. I was going to college to become a broadcaster. I have an awesome, beautiful girlfriend that has been with me for well over a year. Everything was going perfect.....However, I was experincing very dull headaches that most recently got worse when I went to pick up a patient on a strecher. I had several MRIs done, CT scans, biopsy done on March 23rd, and several doctor appts. I can not believe what I am about to write.

I have been diagnosed with a Grade 3 "Anaplastic Astrocytoma". I will begin chemo and radition very soon. The tumor is 100% inoperable due to its location in the cereb. next to the vermis.

PLEASE, PLEASE help me. I am so scared about starting CHEMO and RADATION.
What to expect? Will I get sick? What are common side effects? What will my future hold?

Please help.

Sincerely, Steve.

Terrified for my boyfriend

songbird123 — Tue, 03 Apr 2012 09:37:29 GMT

My boyfriend woke up last week to discover that he was half-blind in his left eye and a few days later it worsened to completely blind except for a very small circle. The eye doctor diagnosed him with ischemic optic neuropathy and said that there was a lot of pressure on his eye. He's ruled out most of the causes of this and wants my boyfriend to have an MRI to make sure that there's nothing in there putting pressure on his eye. I'm scared to death that it is a brain tumor. Has anyone else here experienced blindness or vision problems due to a brain tumor? Thanks so much.

Advocating for Hydorcephalus

steven5 — Thu, 29 Mar 2012 22:03:16 GMT

NBTS,

I think we need to advocate in Congress for those who have hydrocephalus as the result of a brain tumor. It has been an issue for me since I had my meningioma. The shunt worked well at first, now is failing, and needs revision to fix the neurological issues. I am told those with cognitive problems and hydrocephalus are at greater risk for seizures. My cognitive problems place me in that risk group.

Steven

vets and brain tumors

kdgteacher — Sat, 03 Mar 2012 04:33:29 GMT

Has anyone heard of or researched a link between brain tumors and vets who served in Iraq/Afghanistan? My son served in the Marine Corps from 1998-2006 with 2 deployments to Iraq and was dx with a grade 2 oligodendroglioma Dec.2011. There seems to be a higher than usual percentage of brain tumors and other cancers in the vets from the Gulf War thru Iraq/Afghanistan.It seems it could have something to do with "depleted uranium dust", among other things. I thought I'd just put it out there..................

Whole Brain radiation

Ohiocaregiver — Sun, 19 Feb 2012 22:35:13 GMT

I need to connect with others who have had a loved one undergo whole brian radiatin. The tumors have abated but I am left with someone who is nt my husband.

Thalamic Brain Tumor

Finnegan's Mom — Sun, 05 Feb 2012 04:21:52 GMT

Hello,
My 16 month old son as a Grade 3 Astrocytoma located in his thalamus. This is a very rare location. I am searching for others out there who have a tumor like this. I am searching for survivor stories. My email is nmondroski@yahoo.com.
Thank you, Nicole Mondroski Madison, WI

IC Shunt

steven5 — Fri, 27 Jan 2012 21:46:47 GMT

Anyone have complications with a IC shunt? The NS seems to think the shunt is not adequately controlling the spinal fluid pressure. At this point, it could be an adjustment or a malfunction. It will be tested and adjusted next appointment. (March) While this seems to be the problem, there are other neuro answers to the problem that need investgating. Processing information, balance, and coordination are an issue.

Steven

STEROIDS AND SLEEPING

CPAMICH — Tue, 17 Jan 2012 23:03:49 GMT

Hello,
My cousin and business partner was recently diagnosed with a 3 cm inoperable tumor in the thalamus region. We are awaiting results of a biopsy to determine treatment. In the meantime, he is on steroids to keep pressure down. He has been completely unable to sleep for about 2 weeks now, and the total lack of rest is really taking its toll mentally and physically. We asked the doctors about getting some type of sleeping pill, but they will not approve as they don't want him on more meds. The problem with sleeping is a combination of fear, worry, stress and stimulation from the steroids. Any advice?

My dad...

Kailey13 — Fri, 06 Jan 2012 21:24:27 GMT

Hi everyone. I am here because I am having a hard time dealing with my dads brain cancer diagnosis. Easter 2011 he was diagnosed with brain cancer. He is paralyzed on his whole right side and has been since diagnosis. Over the last few weeks hes been having difficulty speaking and getting out what he wants to say. He wont tell my brother or I anything about it or whats going on with him because he doesnt want us to worry. Two days ago he had a seizure that lasted 5 minutes. I know the tumor cant be surgically removed because of where it's located in his brain and its the most aggressive type. I just want to know what to expect. I want to know what I can do and I don't know I just am having such bad anxiety about it im having morbid nightmares and can't sleep. :( Any information or guideane would be great. I'm just at a loss and want to know whats going to happen....Thank you.

Good morning

RACEMOM97 — Thu, 05 Jan 2012 19:44:35 GMT

Hello all. I am 4 weeks after surgery and doing pretty good. I was in the hospital from Weds, (day of surgery) to Saturday afternoon. I came home with no pain meds and on Decadron. I have been weaned from the Decadron and now only take tylenol as needed. The only pain is the scar which looks like a lazy 7 across the back of my head. Scar is way bigger than I expected and the only issues I have are problems with my vision and I am really shaky so I use a walker. The dr. said he wants me to do nothing til I see him the end of the month. So here I sit.
I was amazed at the lack of pain I have felt but also thankful for that lack of pain. Gonna wait a couple of months then have my eyes tested.
My advise is to find a competent doctor you feel comfortable withb and trust. My family was amazed at how much time my doctor spent with them aftyer surgery answering all their questions. Very reassuring for family members.
have a good day and I will be checking back.

Los Angeles Friend Needs Help/Advice/Info

InfoSeeker — Wed, 04 Jan 2012 17:36:14 GMT

My friend in Los Angeles just found out he has a large mass on his brain. Apparently, since it's not in danger of bleeding, they sent him home. He's very confused. All friends are concerned. He has no family to communicate with the doctors.

Here's my first big question: His first consultation with his doctors is not for another 8 days, to see how to proceed. Doesn't this seem like a long time to wait for someone already showing signs of brain problems (problems hearing, confusion about time, forgetting...)?

Is there anybody we can contact in Los Angeles? I hate just waiting around for 8 days. Any help I can get would be greatly appreciated

PS - We're getting our friend to sign an advanced directive form so that one of us can communicate with doctors and medical staff.

Happy New Year

nancy again — Sun, 01 Jan 2012 03:48:31 GMT

I hope and pray that everyone involved in this painful 'mess' has a better year - May 2012 be good for each of us.

Need Advice! Please...

KATHLEEN COGAN — Wed, 07 Dec 2011 22:53:53 GMT

I had surgery in Ocyober 2010 for an oligioastrcytoma II/III. I had 6 weeks of radiation with temodar and then 11 cycles of temodar 5 days on/ 23 days off. I have lost so much weight and can't eat for a week each month. My doctors say that it is better to stop the temodar than to contiue because I am feeling so badly. I had a complete resection. The doctors think it is better to stop it while I am still healthy in case we need to use it (or something else) later.

I have heard of people being on Temodar for 24 months and wonder if it makes a difference. So scared!!

After treatments

Sus — Thu, 01 Dec 2011 20:04:07 GMT

Good Morning.
My husband, Bob, just completed his radiation and Temodar treatments. He was doing well up until the 4th week when he hit a wall. He was tired, lost his energy quickly, kept to himself, bad taste in mouth.
Now that he finished, he is getting sick to the point of vomitting. He doesn't have any energy at all; he aches all over and has headaches. He has excessive saliva build up and an intense sense of smell.
Others, how did you handle the after treatment process? Is this normal and when will he start feeling better?
Thank you and God Bless.

Benign Brain Tumors

steven5 — Wed, 30 Nov 2011 16:48:19 GMT

Brain tumor survivors come in two types: cancerous and benign. Benign may be a poor choice of words as it means gentle and kindly in ordinary life; in a medical sense, it means non malignant. No one would disagree that cancer is serious. I take nothing away from a cancer survivor--my mom is one. Respect both the cancer survivor and the benign survivor.

Benign turmor survivors exist--and matter. Six surgeries in five years have taught me that benign does not mean simple, easy, or no problem. The brain controls many things. The docs worried when they could not wake me up for a week; they worried about my ability to swallow; they worried about the infection that detached the skin from my forehead; they worried that my blood pressure and allergies had gotten so out of control. Any brain tumor has lasting consequences.

Steven