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Raadiation and Chemo

bear2222
Posts: 7
Joined: Mar 2008

I am hoping that some one will share with me the effects that radiation and chemo taken together has had on them. This form of cancer is a newly diagnosed glioblastoma multiforme IV. Since Jan. biopsy has been performed and now radiation and temador are taken daily. Being a mother I would like to prepare what the future holds. I need to know what symptoms to expect if the tumor progresses and is off balance, hard to see at times are effects of the tumor or treatment. The dr.s don't say much until I bring up a symptom. I understand take one day at a time but it is more important to take one day at a time and totally understand what tomorros progressions holds. What are the symptoms of progression? If anyone has glioblastome multiforme IV or has taken care of anyone pleaseeeeeeeeeeeeeeee help. Thanks

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

I'm sorry to hear about your tumor.
My mom had a GBM IV also..for her it did not turn out so well..she passed away in June 07.
You did not give alot of information, so I'm only guessing...I know chemo causes fatigue and nausea, I hope you were able to have surgery and they have removed all of it. I do have a friend who is dealing with the same tumor, he has been fighting it longer then my mom. He's starting to show signs of the end, but he has fought for at least 6 years now. Hang in there, and try to live each day as best you can,
I feel for you and your family.
Janine

bear2222
Posts: 7
Joined: Mar 2008

The road is long and difficult but the fight is there. I do not understand what signs people are talking about especially when you say showing signs of the end. What type of sign?

janinemah's picture
janinemah
Posts: 53
Joined: Feb 2006

I'm not good at this,
But the "signs" are Sleeping 15-24 hours aday. unable to express theirself (looks lost),no long able to get out of bed,stops eating, breathing gets labored, falls into a coma,

Its very hard!..but if I can say anything, they tell me that brain cancer is not painful, the brain does not feel pain, although Hospice would tell me mom was in pain sometimes when she would wrinkle her eyebrows. Have you ask the Dr's if you need to contact Hospice? They can help you with ALOT.
I wish you well, I hurt for you all
Janine

lovingmom
Posts: 3
Joined: Jul 2008

MY SON WAS JUST DIAGNOSED WITH BRAIN CANCER THEY REMOVED THE LARGE TUMOR AUG.13,08,BUT CANNOT REMOVE THE ONE AT THE BRAIN STEM WHICH HIS NEXT TREATMENT IS CHEMO STARTING IN SEPT.AS A MOTHER ITS HARD BUT OUR STRENGTH IS WHAT GETS OUR KIDS THRU THIS BE STRONG NO MATTER WHAT CAUSE IF WE FALL APART THEY WILL.MY PRAYERS ARE WITH YOU IN YOUR FIGHT AGAINST THIS!!!!
A LOVING MOM
GOD BLESS

Mannie
Posts: 51
Joined: Oct 2008

I had radiation and Temodar as an adjunct treatment. I'm a single mom and my son was 16 months old. Of course I had my will, power of attorney, and my living will written before I had surgery to prevent my son going to the wrong people. The treatment gave me a terrible headache and thankfully I was given stronger pain meds than what I was taking. My hair fell out in the front from radiation. It actually started to grow back before I finished my 42 days of radiation. I took Selenium to help it grow back and it really seemed to help. Now I have the thickest hair I could have ever imagined; I use to have baby fine and thin hair. Once it started to fall out I shaved my head completely. I was exhausted in waves. Initially I was fine, then it hit me hard, I was fine again for a while, and then after treatment I was exhausted again. I never slept 15-24 hours a day, I simply didn't have enough time to do that. I took naps but I couldn't sleep my day away because moms can't do that. My aunt would watch my son for me during treatments so I could do what I needed to do during the day like take a cat nap. I was severely nauseated only one day and missed treatments that day but I mistakenly took Temodar too soon after taking Zofran. That said, I don't think that one day of nausea counts. I never had sunburned skin or dry skin. I do have nerve damage that I believe radiation caused. However, radiation has been shown in clinical studies that radiation in young people causes significant cognitive deficits later on. I have a terrible memory now. I know at some point radiation will give me cataracts.
As a mom, I think radiation is a good decision because I personally could not imagine my son without his mom so early on in life. In every decision I have or haven't made regarding cancer, it wasn't about me. It was about my son and how it would affect him. Even if you only life another 2 months, you could use those 2 months to take videos of yourself or a ton of pictures so your kids will know how much you love them and have pictures of you to hold onto.
I go to a brain tumor support group and most of the people there have GBMs. One man lived cancer free for 20 years after diagnosis. Unfortunately, he died because he swallowed one of those fancy toothpicks that hold sandwiches together. That just proves that when it's your time, it's your time no matter what you do. I know other people coming up on 9 and 10 year anniversaries within the next couple months. GBM isn't always a death sentence anymore.

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