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Long term effects

ronefx
Posts: 11
Joined: Jan 2009

I am just curious as to other suvivors stories, I had my tumor( grade 3 astrocytoma right frontal lobe) removed in 1993( 18 years old) and went thru 6 weeks of Radiation and a years worth of Chemo. I am 34 now and I have always felt run down. I have some good days where I can get a lot done, but some days I do not want to get out of bed. I have tried vitamins and supplements, caffine pills, my family doctor prescibed me adderall, which helped out, but its expensive and I do not have presciption drug coverage so really can not afford the medicine, so I stopped taking it. I seem to get fatigued easily and have shortness of breath. I have tried exercising which doesnt make a difference. I have had an e.k.g., x ray/ct scan of my lungs, and I am sure of other tests, just can not remember. I do not know if this is normal and this is how I am suppose to feel. I just feel like a hypochrondriac complaining to my doctor, but I am to the point that I have given up and just going to deal with it. Am I the only one or do any of you have any suggestions as to something that might help me out.

ChristyM
Posts: 38
Joined: Jun 2008

I dont have a good response to your question--but I am so excited to hear you had your diagnosis 15 years ago! How big was your tumor if you dont mind me asking?

ronefx
Posts: 11
Joined: Jan 2009

I am sorry, I really can not remember , I want to say it was in the neighborhood of 3.5 x 3.5 cm or 4 x 4, but i am just not sure , they said it was a pretty good size tumor. Also, here are the chemo drugs I took.

1- Dfmo-controlled study
2- vincristine
3- lomustine or CCNU
4- procarbazine- this made me break out in rashes and they took me off of this mid stream.

I also took chemo during the radiation treatments but I can not remember the name of it.

ChristyM
Posts: 38
Joined: Jun 2008

Its ok that you can't remember---afterall, brain tumors are not easy! It sounds like your size and all was similar to what mine was. That is so awesome and you give so much hope and inspiration. Have you had any reoccurences?

ronefx
Posts: 11
Joined: Jan 2009

The Lord has been good to me. My current problems may or may not have anything to do with the tumor or the treatments, so thats why I was just curious if anyone else could share there experiences. I hope all is well for you and I will be praying for the Lord's hand to heal & comfort you.

kempenl
Posts: 13
Joined: Jan 2005

good luck to you -- can you remember if the doctors told you that they "got it all" --- at least what was visible?

thank you.

ronefx
Posts: 11
Joined: Jan 2009

They used brain mapping to get everything they could, they told me that they got it all.

jenben59
Posts: 142
Joined: Jan 2009

you understand your side effects. I had a brain tumor, I guess since childhood that was slow growing and never had any side effects, when I had a seizure at 45 the found an astrocytoma, benign. I have stage 3c colon cancer now at 49 and an on intense chemo. Anyway, enough about me. I ran across an article about young people with cancer and they've done research following long term effects of young people who have a lot of severe side effects later in life. After I read the article, no, you are not a hypochondriac. This is the address to the article, I hope it helps. http://www.themedguru.com/articles/childhood_cancer_survivors_develop_worse_problems_later-732232.html

Matty
Posts: 21
Joined: Aug 2008

You aren't alone or going crazy.This is one of those late effects of radiation which never seems to let up. I had my brain cancer at age 4. I have always been waiting for the time in life when I don't need 13 to 15 hours of sleep a night to feel good. I never knew why I have such a hard time on less sleep. It is very frustrating.

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