Personal Treatment Decisions…Living with Brain Cancer

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a diagnosis is important. Connecting you to those who can relate and provide support is what we do.

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In my profile I mentioned that I chose to quit chemotherapy in December 2012. It may sound extreme but I am having chemo remorse and wish I didn’t start it to begin with. I don’t feel it benefited my situation and I am pretty pissed off that I was rushed to make preventative treatment decisions. I would have liked to have been given more information and time. I had an intense treatment that consisted of 2 IV chemo meds and an oral chemo med – Cisplatin, Lomustine, and Vincristine. If you’ve had chemo you would understand the “brain fog” and fatigue. I barely remember much during treatment from July to December. I know I was a complete mess internally. From my brain all the way down to my feet. I had all the classic side effects. Memory loss, personality changes, hormonal changes, weight gain (which really sucks!!), peripheral neuropathy and the list goes on. I was super lucky I only vomited once, but I had like zero appetite, everything tasted like metal! I am pretty sure the steroids caused the weight gain plus the tumor itself. The brain tumor I have is right smack dab in the middle of my brain, above the brain stem. I call it the evil dot. Lol!

I would like to know why there is so much ignorance (especially in the small “city” I live in) about brain cancer! It seems like it affects other people more than it affects me. Medical professionals ask what type of cancer I have and when I tell them, I get this pathetic look. I hate those looks! When I was wheeled in for my port-a-cath removal the nurses where like “Oh this must be a great day for you!!” I’m like YA I get this stupid POS out of me! Because I am choosing to do so, not because it’s allMay TD over for me! Then more strange looks and inquisitive “why’s” I am getting sick of explaining why I am so anti-chemo! Who in their right mind would want chemo?? I realize there are certain cancers that require it and many, many people take it. But brain cancer is such a “maybe” will work type of treatment. Its QUALITY of life I want not necessarily quantity, though my husband and family members would beg to differ though they saw what I went through and are totally understanding. But it’s still my choice and whatever time I have left on this earth, I want to enjoy it. 6 months of chemo has taken away so much from me, and well the brain tumor too. It’s hell. I feel compassionately empathetic for the people who need chemo or feel pressured to take it. Do the benefits outweigh the risks? I don’t know. Would a vegan/raw diet work better at building up immunity and blood cells? There are so many natural cancer treatments, why are people so scared to try them? I guess this is an extremely opinionated first diary huh?

I have a lot on my mind and with my MRI results coming up this Friday I always get emotional and paranoid. I hope I haven’t offended anybody. I guess I just feel like there has to be more than radiation and chemo for brain cancer patients. Something with less side effects.