To chemo or not to that really a question?

So I am 4 months into the 12 mo cycle of temodar and i am wondering if it is really worth it. I mean, it is only buying me time in hope that a real cure is found soon. At least thats what i have been told. My schedule is 5 days on and 25 days off. Seems easy enough, right. The pills are supposed to be milder than IV chemo and the side effects less noticeable...but i am having a rough time with it.
I feel like hell for the week i am taking the stuff, and generally sucky for the next two weeks, slowly getting to some kind of normal by the 4th week of the cycle and then i have to start all over again!!!! Its taking a toll on me and i am questioning wether i want to even finish out the 12 months....or just take my chances with the tumor.
Is this terribly selfish? I mean, the tumor will come back for sure if i stop. It may or may not come back during treatment, but almost for sure afterwards. So i think "whats the point of feeling like this if its just going to come back anyway?!" i mean , how likely is it that there will be a major breakthrough within the next 8 months with this specific kind of tumor? then i stop and think about how much longer i might get with my kids and husband and i think it would be worth it. but is it really worth it if i am miserable and grumpy most of the time?
Such a hard thing to have to decide. :(

Have any of you dealt with this issue? how did you handle it? What were your pros and cons?


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  • My decision making was a bit simpler as the doctors had surgically removed my melanoma and even though it's at high risk of coming back (as in greater than 50%) there aren't really many options for treatment and the only ones I qualified for were additional surgery and interferon... neither of which have been proven to really help. So, additional surgery and interferon which makes you sick and probably doesn't help at all OR wait and watch- I picked wait and watch. But if there was something that even had a real chance of helping me, even if it was just keeping me alive longer and not curing anything, I think I would take it. Not just for myself but for all my family and friends that would be terribly upset if I didn't try everything. It does seem like a crappy deal though, taking something that makes you sick and doesn't even cure you... but what else is there to do? Anyway, I guess you have to figure out this one for yourself and what's right for you, wishing you the best and lots and lots of strength!
  • I have my big 1 year follow up tomorrow, and I PO seeing the same thing. To add to my anxiety, my aunt, who was diagnosed with breast cancer a couple of months after me, went through surgery in June and they told her she had a 95% chance she'd never have to worry again. The chemo had already killed everything. Six weeks later, she's told it has spread to her brain, spine, and spinal fluid. She's also going to MDACC tomorrow so they can drill a hole in her skull to deliver chemo directly to the spinal fluid. She has three kids and a husband and a family is so sick over the whole thing. My mom and I were having a conversation tonight and she said she wouldn't do it if it were her. Especially since it is only buying her time. My response to her is the same I'll share with you. We're all buying time. That's why we wear seatbelts and don't touch hot stoves and don't cross the street without looking. Cancer or not, we're all going to go sometime. We just don't know when and how. Until then, I'll take all the time I can get.
  • I feel for you Melissa! My Ben was told chemo hasn't been shown to help what he has so he didn't get it. He did have brain surgery in Aug '10, then in Oct. '10 started radiation for 6 weeks/ help with his seizures was for the most part. The only know what they've seen...and they can't tell us much. But I do know this after seeing him go through hell, during and after treatment with the healing from was horrible. He slept most of the time and he was in and out of the hospital...lots of med issues as well. BUT we are now a year out from surgery and the last MRI this in July showed that it had shrunk. He's been seizure free for months now. My point is you have to make your decision for you, talk to your husband, talk to your Drs but after really feeling unsure about everything cuz how do any of us know if this will work or hellp or how much time yada yada...everyone is different...but in our case we can look back and we've been given at least 5 good months. To us that's precious...I hope for more of course but who knows when or where it could grow more...we don't but we have to keep looking forward one day at a time!

    You have to make that choice for you though. (hugs)
  • Hi Melissa,

    I did about 5 rounds of temodar like this on my grade 2 brain tumor. When it became a grade three my neurologist changed the plan to temodar once a month at a much higher mg. with radiation and now my tumor has been stable for 6 months (It's inoperable). I know it can feel like just waiting for the next thing till it grows but while it'd not I have to enjoy life. I've had three surgerys that have taken away my ability to use my left hand and left me using a cane. I'm not going to waste any time that I'm "healthy" and out of the hospital not living- even if it's on chemo.

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