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Brain stem glioma

lynnstar's picture
lynnstar
Posts: 6
Joined: May 2011

Hello I am 33 years old and was diagnosed with inoperable brain stem glioma.I am on my 3rd week of radiation therapy and will be on chemo starting next week. I have lost all my hair already and have not been feeling well at all.I have been week and nasueaus each day i had to stop working and everytone is telling me to quit school as well and im fighting to keep attending. Im scared and hope I live longer than the doctors predict.They say the tumor will return and all I do is pray it doesnt. I have a great support system at home with my husband and my 3 boys but i still feel so alone in this situation. I hate feeling sick and was hoping for advise and support on the discussion boards. I had a cat scan done and the tumoe seems to have grown instead of shrink from the radiation or it can also be radaiation necrosis. This isnt easy at all and im fighting each day for my life and my family...

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

I am sorry to hear your news. I am 34 years old and have a GBM 4. I was able to have the big one removed. I have 2 more spots that they didnt remove because they were small. I am in my 3rd week of radiation. I stared radiation and chemo (temodar pill) on the same day. I am sorry that you are feeling sick. I am fortunate that I have not been feeling sick at all. Since they have decreased my dexamethasone, i my stomach does feel a little more touchy but, no real sick feeling. I cant taste anything since the radiation and chemo... I cant taste ANYTHING! It feels like my tounge is burnt. I know what you mean about feeling alone. I have a great husband and family and friends but, they dont have a tumor. I used to have ALOT of hair.. now i have none. Its all gone. Have you gone to a different doctor for a second opinion? Try ginger ale to help with the sick feeling. They also have ginger candies (i have not been able to find them... probably at a health food store). I heard those help settle stomachs. I know its an overwhelming feeling. One day you are fine the BAM! Something like this happens. I am in the same boat. I stopped working. I dont want to but, i just cant concentrate right now. My plan is to go thru my treatments, get my scan and see what is what. If all looks good then, i will go back to work. The crazy thing about my situation is my father has the same tumor. He was diagnosed October of last year. He lives in Hawaii and flew out here for his surgery etc so me and my family could take care of him. So, i already know what i am dealing with. You just concentrate on you. No worries about your studies right now. Enjoy your family, do things you like. I still cook and clean. Try and get out and walk or get some sort of exercise. I really dont feel like doing anything but, i noticed that when i do walk or get on the treadmill, i feel better the next day. Just keep thinking positive. The mind is very powerful. I get up every morning and talk to my tumors.. I tell them they cant live in my brain. Hang in there honey. I know its not easy.

lynnstar's picture
lynnstar
Posts: 6
Joined: May 2011

Thanks so much for the reply I hope that you will get rid of the cancer as well....It is extrmemly difficult to deal with this and i am glad u are not feeling sick...I am also having problems with tasting foods...its not the same..I am trying to enjoy life as much as i can thanks for all your advise...u hang in there as well...walking does make me feel a lil better as well...hope u are able to get back to work and beat the cancer...its nice to talk with someone going thruy what im going thru..i start chemo on monday and it will be the same pill u are taking so we shall see what that brings..radiation didnt help my tumor so it has left me worried but im tryin to remain positive.....take care

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

My daughter has anaplastic astrocytoma grade 3, she is 13. AA3 is not exactly the same but her tumor grew during radiation also and the temodar did not work for her either. After 3 brain surgeries to remove reoccuring tumor growth, her doctors said that there was nothing left that they could do and to enjoy the time I had left with her. Well, let me tell you that did not sit well with me. I got all her medical records and told them to go pump sand. To give up on a life so easy? I don't think so. I decided to bring her to Boston. She now goes to the Jimmy fund clinic at the dana farber cancer institute. She was put on a 5 drug regimem including 2 oral chemos and IV Avastin. She has been 7 months cancer free. 0 new growth, please never give up. Get a second opinion and go to a teaching hospital/cancer center. They can do amazing things, just look at my story. My daughter could be with God right now if I listened to her 1st doctor. I know money can be an issue when you are looking for a good hospital, but most of them have programs to help with gas, food and even can help pay some of your bills. They also have places like the ronald mcdonald house that you and your family can stay while you receive treatment. You also should qualify for disability through the state you live in. Good luck and I look forward to reading more post from you. think positive and positive will happen.

lynnstar's picture
lynnstar
Posts: 6
Joined: May 2011

Thank you so very much for sharing. I am so glad you took your daughter to a better facility to get the help she needed. I am so glad to know she is doing well. I will continue to think positive thoughts and keep my faith...The support i recieve here on this discussion board is amazing. Good luck and may your beautiful daughter stay cancer free. My thoughts and prayers are with u and your family. Lindy

deja98408's picture
deja98408
Posts: 12
Joined: Apr 2011

STAY POSITIVE! The mind is a very powerful thing. I do break down and cry for no reason sometimes but that is okay. I still tell myself you are going to be okay, you are going to be okay. I know your world is upside down. You concentrate on you. People beat odds all of the time. The temodar is a fairly mild pill (from what i have been told). I (knock on wood) have not had any real bad side effects except for the not being able to taste food. dont know if it is the radiation or chemo.... cant wait until i can taste food..... i want some azteca....I wish they could find a cure for cancer.... You will be in my thoughts and prayers you hang in there.

lynnstar's picture
lynnstar
Posts: 6
Joined: May 2011

Thanks so mmuch I will try my best to remain positive. Im glad you have not had too many side effects....I hope it stays that way and i will continue to pray for u as well...Take care...xoxo

palmyrafan's picture
palmyrafan
Posts: 398
Joined: Mar 2011

I am so sorry to hear about your diagnosis.

I have brain cancer - meningiomas that came back in locations that can't be operated on. I've already had the surgery and radiation therapy 16 years ago and 15 years ago and there is nothing to be done but watch and wait right now.

I can tell you this. You are a vibrant, young beautiful woman with a wonderful husband and 3 amazing sons to live for. You are already a survivor. YES you are. We all are. The minute we are diagnosed, we are all survivors.

Now you need to get a 2nd, 3rd or even 4th opinion. I know it may be difficult to do: finances, small town, etc., but trust me, this is your life we are talking about here. By limiting yourself to one doctor, you are limiting your life to what this one doctor knows. Also, try to make sure that they are board certified and are located at a teaching hospital. They usually have state-of-the-art equipment and the research funds available to be cutting-edge which works to your advantage.

This is also a good time to focus on you. If you are like most wives and mothers (and which of us isn't?), you put yourself last. Wrong Answer! It is time to put you first. Put those boys to work if you haven't already done so. Create a rotating chore chart that expands their duties to help you out. Tap into your friends and neighbors who say they want to help. Let them. Assign laundry duty, grocery shopping, meal preparation, house cleaning, whatever you need to have done and focus on you. You need to conserve your engery to fight the battle that is going on inside your body. Don't be afraid to give into naps when you can. Resting, even if you aren't sleeping, allows your body to concentrate on only one thing at a time. Even 30 minutes helps.

As for the nausea? Don't suffer in silence. It could be the medication you are taking, how you are taking it, whether another food or drug is interacting with it, anything. Talk to your doctor about some anti-nausea medication. I used it when I underwent radiation therapy and it really did help me.

Finally, don't listen to the doctors who tell you that you only have a certain amount of time to live or that there is nothing they can do. They aren't God and have no idea how much time you really have. Find a doctor who is willing to work with you and listens to you. You are worth it and you are important.

Best of luck to you. You and your family will be in my prayers.

Teresa

lynnstar's picture
lynnstar
Posts: 6
Joined: May 2011

Hello Teresa I truly appreicate your message and it feels so good to hear positivety from others. I do agree with you for as long as i could remember i always put myself last but i guess thats a mother and wife thing....i have decided to stop believeing all the doctors tell me and rely on God and my faith..your message has put a big smile on my face and i pray for you and your family as well....It nice to have a suppiort system and i was leary on joining this discussion board but i am ver grateful i did....thank you very much and best of luck to you as well. I will put all my boys to work as of today...lol Lindy

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