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GBM IV

vls
Posts: 4
Joined: Jun 2009

My dad was diagnosed with this terriable cancer on April 20, 2009. I knew nothing about cancer but felt very well knowledged in about two months. He has just finished 6 weeks of radiation and chemo. He does not get out of bed anymore because he is so tired. When I read about others doing well it makes me wonder why he is not. Doctors tell me in about two weeks his energy level will pick back up. I am exhausted reading about other treatments and still trying to be a mother and work. I feel like my family has put all of this on the back burner and has expected me to take over. It is fine I will be his voice but am angry they don't help. I know he needs me and I will not give up!!! I still need a dad and his grand kids need a grand father. I am waiting for an answer for a clinical trail vaccine CDX-110 it has lots of good stories. I am here and helping and not willing to give up.....I know all my hard work will pay off. We will beat this!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Vis...keep that attitude and you will beat this. Whatever happens in the future, you will know in your heart that you gave 100%. Many people can not deal with the big CA diagnosis and simply run the other way. It's almost as if they believe it's contagious. Reality is they don't know how to deal with it. It almost sounds as if your dad has given up.? Give him a reason to fight this! And the two weeks until his energy level picks up? Each person has a different experience...it will happen at it's own pace and your dads will power.
HUGS

Mannie
Posts: 51
Joined: Oct 2008

I checked out the clinical trial your hoping your dad gets into and it looks really interesting. I took Temodar orally and know some people that are taking the IV form. It will be interesting if Temodar becomes an injection also. I didn't get the impression from your post that your dad has given up on living; I got the impression that he's just completely exhausted from his treatments. I think everyone who's had radiation/chemotherapy to their brain for 6 weeks understands that exhaustion. It takes a while to bounce back from that tiredness too. Expecting him and everyone in your family (including yourself) to have a positive attitude all the time is completely unrealistic too, remember that.

Just remember to take care of yourself. I remember about 2 months after I was diagnosed that my mom was so busy taking care of me, my son, and everyone else in our house because she thought she could do it better than anyone else that she began to look like hell; she was completely run down. I was still in bad shape but I had to tell her that she looked awful, that she needed to get a hair cut, and just get away from our house for a few hours. It took her a couple of days to actually do that but she finally did. My aunts and uncles were starting to worry about my mom because everyone could see that she was doing too much. So please, take care of yourself, your family doesn't need two sick family members.

So, basically...It's okay to not be super woman and it's okay to not be manic.

Take Care,
Mannie

vls
Posts: 4
Joined: Jun 2009

The study does look really good but he did not get in. It is a double edged....meaning if you get in the cancer is very aggressive in fact probably the most aggressive. He does not have the protein found in the tumor to get in. He has had a set back last week. He has a blood infection and phenomia(spelling?). Sunday night his heart started beating real fast so they had to shock him. He is still in the hospital but is making steps forward. They think the Temodor really did most of this. He says no more he will not do nothing else. He is done and his future is in gods hands. I hope he changes his mind. It is a shame to come so far and stop now. He is a sick man on his way to recovery so maybe when he gets better he will change his mind. I think in this condition it's not good to talk about it. I am sure better days are coming...... Thanks for the words or encouragement!

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