New Gbm

My husband will start radiation and chemotherapy next week for his gbm. His surgery was about 3 weeks ago. They were able to remove 40% of the tumor. He is 39 years old and we have a 5 year old daughter and a 3 month old son. Needless to say I am terrified. He is amazing. He has decided he is going to beat this. He is young and healthy and has had no symptoms. His tumor was found after he fell and suffered a concussion. He is an airline pilot, and has come to terms with the end of his flying career. We actually feel blessed that they cound the tumor and we were ablt to get treatment very quickly at Md  Anderson. (we live in Houston) I guess I just wanted to share with others who are going through the same thing. His treatment will be 6 weeks of radiation and 42 days of the Temodar. We see his dr. again on July 25 to see the results of the treatment. Pray for good results.

Hi There!

My name is Chakaris (cha care ris) from Milwaukee, WI and I know exactly what you are experiencing.  My sister Connie was diagnosed at the same tender age of 39 with Glioblastoma Multiforme.  Unfortunately, she lost her battle April 7, 2006 after 2 surgeries.

 Although we suffered a loss, I pray for great health for your husband.  I found out after I lost my sister that your diet after the surgery is important.  I heard you have to stay away from red meat and fatty foods.  I'm no dietician but what little I have to offer means the world to me if I can help somebody else.

I'm praying for your family as a whole.  Stay encouraged and know that somebody in Milwaukee is praying for you!!!!

 God Bless!

~Chakaris~

Hi, sorry to hear about your upcoming battle with GBM, I want to tell you about a little known trail going on, we tried to get my sis-in-law in and at the last minute she took a turn for the worse and this disqualified her from this, look up TM-601, it's about the only promising treatment on the horizon for Glioblastoma, Sheila survived 23 months and in good health mostly, she had surgery, termador, radiation etc. I just wish she had made it to the TM-601 study, but she got an infection and her body was to weak to go thru the trials!, Do it early, dont wait, please consider this opetion, i have read for hours on GBM and this llooks like the truly only promising thing even out there, am guessing Ted Kennedy will try this TM-601 himself.  Bless you and i ma thinking about ya'll!

How is your husband? I was doing my research on GBM for my best girl friend and came across your post and saw it was dated April. Cari

He is okay. He has 2 more rad. treatments and 3 more days of Temodar. We will get results in August. We are praying for significant shrinking. How are you all handling everything??? This disease is just awful. There is also a great site yasg.com. I don't know your ages, but it has great info just for gbm. Also, virtualtrials.com has good info. Where are you guys located? We are in Houston, so treatment is at MD Anderson. Thanks for checking on him. Let me know about your situation. Mary

My girlfriend Sara is just starting all of what you and your husband are going through now and we don't know what to expect. Our kids are older now and honestly that was one of the things I was grateful for. We met when our kids attended the same preschool and our oldest girls just graduated this year. Sara is 44. What can her husband expect for those radiation treatments and starting the Temodar? On 7/4/2008 maryws wrote: He is okay. He has 2 more rad. treatments and 3 more days of Temodar. We will get results in August. We are praying for significant shrinking. How are you all handling everything??? This disease is just awful. There is also a great site yasg.com. I don't know your ages, but it has great info just for gbm. Also, virtualtrials.com has good info. Where are you guys located? We are in Houston, so treatment is at MD Anderson. Thanks for checking on him. Let me know about your situation. Mary -----end quote------

At 44, Sara is considered young for this disease. Typically, it affects men in their late 50's. The radiation makes ny husband very tired, He naps 2-3 times a day. The Temodar has not been too bad. He takes Zofran 30 minutes prior and makes sure to take it on an empty stomach. His biggest problem has been reflux. We elevated his bed and increased reflux meds and he is okay. He has no appetite. He literally has himself on an eating schedule of 4-5 small meals a day. He also eats very bland foods for the reflux. He has lost hair  from the rad. So  many of the side effects can be managed. Sara is considered young, so the website yasg.com is a great resource. Also, my husband's bloodwork so far has been really good. Now he does get accupuncture to help with energy. It seems to help. He really doesn't feel terrible, just tired. Feel free to contact me any time. I know how scary this is. We are pretty new to gbm world, so it is a learning process.  

 

On 5/20/2008 maryws wrote:

My husband will start radiation and chemotherapy next week for his gbm. His surgery was about 3 weeks ago. They were able to remove 40% of the tumor. He is 39 years old and we have a 5 year old daughter and a 3 month old son. Needless to say I am terrified. He is amazing. He has decided he is going to beat this. He is young and healthy and has had no symptoms. His tumor was found after he fell and suffered a concussion. He is an airline pilot, and has come to terms with the end of his flying career. We actually feel blessed that they cound the tumor and we were ablt to get treatment very quickly at Md  Anderson. (we live in Houston) I guess I just wanted to share with others who are going through the same thing. His treatment will be 6 weeks of radiation and 42 days of the Temodar. We see his dr. again on July 25 to see the results of the treatment. Pray for good results.

     You all are in my prayers.  Hold tight to your faith as it will not let you down.  On May 6, 2008, I was admitted at the E./R Dept for a migraine and on May 9 th had a 3 inch GMB Tumor removed and a 1inch fluid cyst tumor removed from the right front of my brain.

     I still have a 1 inch hole in my brain and the brain has just begun to compress back with the left side of the brain.  I understand your fear, but know his fear is for all of you as well as himself,  In my prayers you all remain,

Thanks for thinking of us. I will keep you in my prayers as well.

Hi, I am still thinking about you and your husband and wondering how you can handle all this with two very young children. My girlfriend Sara has had a couple of setbacks so now that the latest brain infection has been taken care of, she will start chemo and radiation hopefully next week. Wow, it was scary there for a while with her words not making sense. I did go to the yasg.com website and luckily it is out there. What a great thing for young people because so much is for the older group. I know this sounds odd, but I spent the day with Sara at all her appointments yesterday and we laughed a lot and it actually was fun. I find that I am less scared when I am actually with her. I didn't even get upset when she wanted to talk about her memorial service. She is different though than most people and has already had emotional difficulties so the thought of dying is almost a relief I think. On another note, we have something called the Brain Tumor Coalition here. A young mother here in the neighborhood whose husband has a GBM discovered coincidentally with a car accident, told me about it. This is a support group and fundraising group that actually pays the bills of patients. She told me she hasn't had to pay one bill yet! How cool is that. Well, I am thinking about you and my young mom neighbor and hoping to send you strength. Sara's kids are as old as mine, 15 and one off to college last week so I do think it is easier that way (when the kids are older). Anyway, I know you are busy so just know someone is out there rooting for you and your family.