http://my.braintumorcommunity.org/discussions/guidelines-for-use-of en-us http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/05/13/thalamic-tumor-prognosis http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/05/13/thalamic-tumor-prognosis This is my first post and I am hoping to gain some insight through your experiences.  My husband is 54 and was diagnosed 9/11 with an inoperable thalamic astrocytoma.  It is beleived to be a grade 2 but may be  agrade 3 although I am told grade doesn't matter since the location is not any where that surgery can be an option for him.  The tumor is too large for the gamma knife (it measures around 5 cm and is infliltrative).  He completed radiation mid December and has just gone downhill from there.  He was up to 16 mg per day on decadron and one of the images showed that the sweling and contrast had improved but 6 weeks later on 1/2 the decadron he was so sick he couldn't walk without help, has incontinence issues, is sometimes confused and/or not able to articulate nearly as well as before.  He is so fatigued and sleeps a LOT.  He is very weak (probably from the decadron).  The latest scan schows more inflammation and contrast so we got him back up to 16 mg on the decadron and started Avastin this week.  I wish someone would tell me what I can expect in terms of how long he can live like this and if his quality of life will ever improve from here.  So far it has been a downward decline with no improvements.  Has anyone had experience with this type of tumor and how it will most likely play out?  Give it to me straight-I can take the truth!  THANKS!]]> Sun, 13 May 2012 13:28:43 GMT rmr2011 http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/05/10/hyperthermic-treatment http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/05/10/hyperthermic-treatment
does anyone here have experience with hyperthermic treatment?
I am looking at it as an option for my sister who was diagnosed with two brain tumors and one in the lining of her uterus. Her operation on her brain tumors will be early next week and then we will discuss her treatment with her doctors. They do not seem to be inclined to consider hyperthermic treatment, but we want to explore all possible avenues.

Thank you.]]> Thu, 10 May 2012 18:38:52 GMT Anonymous http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/04/09/tremors-done-right-side-of-the-body http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/04/09/tremors-done-right-side-of-the-body Mon, 09 Apr 2012 10:13:30 GMT kimbue http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/04/04/no-surgery-option http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/04/04/no-surgery-option My husband who is 59 was diagnosed about a month ago with GBM IV and 2 university surgeons said they cannot operate without hurting him. We started with Temodar and radiation. All the stories I read with some measure of success report surgery as a first step in treatment and I am worried that he has less chance of adding time and quality to his life. Should I seek yet a 3rd opinion? Does anyone know of anyone who survived more than the average of 12-18 months like we were given?
On another note; does this pain in the heart of heartbreak from losing the person he once was ever lessen? This is so terrible. Thank you.]]> Thu, 05 Apr 2012 00:55:50 GMT CCox http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/26/a-story-of-hopefighting-glioblastoma http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/26/a-story-of-hopefighting-glioblastoma Mon, 26 Mar 2012 22:55:33 GMT Isabel http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/22/im-not-supposed-to-know http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/22/im-not-supposed-to-know Thu, 22 Mar 2012 05:03:24 GMT jmrichied88 http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/11/travel-insurance http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/11/travel-insurance About 2 weeks ago my fiance's mother was diagnosed with Glioblastoma, last week she had her surgery to remove the tumor and they removed most of it. Her mother is a canadian citizen and we are planning to get married in hawaii, we want to make sure she has insurance while we are there. 
The question is does anyone know of travel insurance or something similar where we can get coverage for a prexisting condition such as this. I've been looking around and have not seen anything as of yet.]]> Sun, 11 Mar 2012 22:15:57 GMT Jaydan80 http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/10/face-rash http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/03/10/face-rash Bob is doing well and will be reaching the 6 month mark since he was diagnosed with GBMIV.  He is responding well with the Temodar and each month his ON is very pleased with his progress.
Today, as he was shaving, he noticed that his left face had a some red spots.  By the end of the morning, he his entire face was completely covered with this rash.
Can anyone tell me what may be going on and if anyone has had this reaction from the drugs he takes (even after 6 months).
]]> Sun, 11 Mar 2012 01:47:44 GMT Sus http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/25/does-anyone-know-people-who-have-had-surgery-but-d http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/25/does-anyone-know-people-who-have-had-surgery-but-d Sat, 25 Feb 2012 12:11:05 GMT Elise's mom http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/19/whats-the-best-online-brain-training-your-advice http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/19/whats-the-best-online-brain-training-your-advice
I read the AARP column that lists five different online programs and am wondering if anybody’s used these and, if so, what do you think? Good? Bad? Waste of time and $$$? (Given the cost of these its more $$$ than ¢¢¢)

Here’s the list from AARP:

1. MindSparke - http://www.mindsparke.com/
2. Lumosity - http://www.lumosity.com/
3. PositScience - http://www.positscience.com/
4. Cogmed - http://www.cogmed.com/
5. NeuroActive - http://neuroactive.ca/EN/

Here’s a link to the AARP article: http://www.aarp.org/health/brain-health/info-12-2011/brain-games.html]]> Sun, 19 Feb 2012 14:55:22 GMT http://johnstumor.blogspot.com/ http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/13/keppra---brain-tumor http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/13/keppra---brain-tumor Mon, 13 Feb 2012 14:27:42 GMT Anonymous http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/13/my-21-yr-old-treated-for-sinus-flu-became-brain-de http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/02/13/my-21-yr-old-treated-for-sinus-flu-became-brain-de Mon, 13 Feb 2012 06:10:51 GMT Anonymous http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/01/30/your-oncologist http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/01/30/your-oncologist Just thinking about what oncologists give patients as their prognosis for GBM4.  Would like to know what others say to you.]]> Mon, 30 Jan 2012 17:37:25 GMT Sus http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/01/29/single-mom-with-2-kids-and-medulla-soma http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/01/29/single-mom-with-2-kids-and-medulla-soma Sun, 29 Jan 2012 23:04:33 GMT Lynwyn http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/01/22/father-with-esophagial-cancer-that-metastisized-to http://my.braintumorcommunity.org/discussions/guidelines-for-use-of/2012/01/22/father-with-esophagial-cancer-that-metastisized-to
In December 2010 my father was complaining about pain and difficulty swallowing and keeping down food. He was diagnosed with Esophagial cancer and after seeing the doctors at Duke they discovered that it had spread to his shoulder, his opposite shoulder blade and after treatment begain and my father complaining about pain in his knee, they said he had cancer there too. He began radiation on his esophagus and chemo for everything else in January 2011. This past October he was told that there was only scar tissue in the region of his esphagus and that the cancer in his shoulder blade was the only spot left and was still shrinking. Early this December he started complaining about seeing double. By December 20th or so his eyes started to cross and he began wearing a patch over one eye. By Christmas he was complaining about nech pain like he slept wrong or did something to aggrivate it. He had been pretty active for the 5 months leading up. From when I saw him at Christmas until January 8th he started getting nauseous all the time, his balance started to be effected and he lost 15-20 pounds. He had been to the doctor and was told it was all effects of the chemo which he never stopped. But my mom called me on the 8th and said that he was lathargic which I said could be because he was dehydrated from throwing up for the last couple days and she said he was weak and was having trouble keeping his balance. Then she said the one thing that really made me say "you need to get him to Duke right now". She said he couldn't hear her.

The team of doctors came in and tetsed this, tested that, did an MRI and such and said they couldn't find anything wrong. As the team was talking trying to figure out what to check next my mom overheard "but he hasn't had any headaches", or something onlong those lines. She interupted and told them that wasn't true, that he had been having headaches and neck pain. At someoint on their paperwork under the question about that the nurse had put no. The head doctor ordered and MRE and then told my parents that he had a very agressive cancer in his brain stem and spinal cord. My dads one doctor took off his lab coat and sat down with them and explained everything telling them that there was nothing they could do and that surgery was out of the question. He told them that they would stop anymore treatments of chemo and asked if they knew what Hospice was. The radiation doctor wanted to do a 14 day whole brain radiation regiment, which was a disagreement so to speak between the two doctors. They scheduled everything with Hospice and he has been going back and forth to Duke for his radiation. He has 3 more treatments left.

At this point I have worked out a schedule with my job to work four 12 hour days so I can spend Fri-Sun taking care of my dad so my mom can still take care of her cutomers and get a chance to get some rest from the situation. He has done nothing but sleep almost the entire time the last three days. He is still eating pretty good. He can not walk in any way. He is stuck to a wheel chair except to walk down the steps to get i the car or to move from ben to wheelchair and wheelchair to toilet or to the car. That wears him out so bad. When he sleep he spends the whole time talking and using his hands to do tasks. It is obvious that he is realiving things from his past. His vision is getting worse and you can tell he is having a harder time focusing. His breathing is very shallow all the time and he struggles to swallow without choking. When you ask him questions he answers right away. He still is very aware and still has his facualties. He has problems knowing what time of day it is because he sleeps almost the entire day.

I know that he is terminal and nothing can stop that now. I am the type that needs to know everything that is going on and why it is going on. I am trying to figure out what to expect and what to look for over the coming weeks or months. My mother is very upset over everything so I am trying to fill in on making future plans and arrangements so I can keep as much stress off of her as I can. Any help with this would be greatly appreciated. I live 200 miles away so I can't be here when Hospice is here checking on him and my mom is not going to ask questions. Plus I know that brain cancer is different than all other cancers because of all the functions that that region controls and that the bodies systems don't shut down the same way. Most Hospice nurses don't deal with brain cancer and really do not know how the correct answers. This is just fromm what I have read over the last couple days, so I am not trying to offend anyone. I belive that Hospice are a great group of people and are invaluable to families and patients. ]]> Sun, 22 Jan 2012 14:35:42 GMT Chuckie