What was the worst thing about your chemotherapy treatments? The puking, fatigue, the hospital visit? What?

Question

I had a grade 3 astrocytoma brain tumor and underwent a seven hour craniotomy with motor mapping at UCSF. I had external beam radiation and six rounds of BCNU chemotherapy treatments, via an IV. Rounds1-3 were not that bad. Rounds 4-6 were horrible. I puked, dry heaved nothing but spit and air, slept a lot, ate nothing that i could keep in my stomach for more than an hour or so. Even when i drank water after an infusion, I would puke it up. My teeth looked like hell and i got sores on the edges and insides of my mouth.

But I survived it and am six years cancer free.

Answer 1

Congrats on the six years. I hope I can say that someday. I am only on round 2 and I am so tired that I can barely get up some days. I have lots of sores. Even in places I shouldn't mention. It is awful, but I have a 2 year old daughter and this cancer isn't going to get the best of me. I will win. I promise you that! :)

Answer 2

I'm glad you were diagnosed and went through treatment successfully - good for you!

I'm also a 6 year survivor. Must have been the Y2K bug for us.

You treatments sound much more difficult and horrible than mine.

For me, the chemo was horrible and I was really ill from it, but the psychological effects were worse.

Looking in the mirror, seeing no hair, and on a woman that is so meaningful, seeing that very pale face and black veins was such a reminder that I was ill, even on days I felt pretty good. It just takes away so much of your every day identity as a person and turns you into a patient, weak, at the mercy of cancer, the meds, other people's help.

Funny thing is that I think surviving makes you a much stronger person, but people still think of you as weak somehow.

Best to all of you, my fellow survivors.

Answer 3

Congrats on your 6 yrs!!
I am 3 yrs out from having breast cancer 2x, back to back 02 and 03..

My worse was the first time with 3 chemos mixed, I forget the actual name, but it was nicknamed the "red devil" . IT was almost comedic in its size, hahahah.
It was really bad, it took a few times for anti nausea meds to work. I would get sick, or drive heave . I would lay on the couch almost the whole week after. I couldn't' stand the smell of chicken and noodles. I had to have something cold with the one med being injected. I had the banana ice cream, and to this day I can not stand it.
I would get nauseated in the car, and still do. Oh the wonderful chemo. I can live with some few irritating, but Minor side effects.
My 2nd time around wasn't too bad.I was tired, but I didn't get sick.
Good luck to you
God Bless

Answer 4

Mine was pretty tolerable. For the AC, the fatigue started out mild (I could go to the gym the next day and do at least a bit of cardio), but after the fourth treatment, I didn't leave the house for 8 days after that.

The first time around they gave me Kytril so I wouldn't vomit. But that stuff is NASTY! Low energy levels, low appetite, and nausea (the kind where you don't vomit).

I made them change me over to Zofran. I found that I'd vomit once during the next 24 hours after my treatment (and indeed, the last time around, I was sitting watching West Wing with my Dad that night, they didn't manage to bring me the trash can in time, we're talking projectile all over the Oriental carpet).

But my energy levels were much better, I was able to eat like a horse (as in, for breakfast the next day after chemo: 3/4 of a chicken and a huge tomato and lettuce salad with vinaigrette). I had weird food cravings too, now that I think of it: HAD TO have tomatoes ALL THE TIME, and had to eat meat too (which is weird because I'm a vegetarian).

And another thing: whenever my counts would drop, first of all they always dropped a good week later than they were supposed to, so they had to put off my treatments for a week. And when they did drop, my eyes would get all bleary and I'd have to blow my nose non-stop all day for at least three days. But that was good, because then the germs didn't have a chance to get in...

The Taxotere didn't give me fatigue - I could do my normal workout at the gym, say, four hours after finishing chemo - but the T did give me pretty nasty heartburn. Also, my face swelled a bit and I felt like I had a sort of grippe from the steroids (an anti-allergic measure).

Another thing that happened with both adriamycin and Taxotere: there's a kind of weird taste in your mouth that appears during the infusion, so I always had to have something to mask it with on hand - say, a piece of lemon candy (for the adria), or a sandwich (for the Taxotere).

And of course it was hard to lose my hair that was long enough I could almost sit on it. So what I did was have a hairdresser chop it off beforehand and have someone make a hairpiece out of it, to stick in a hat.

Then I went to the opera one night... Keep in mind, I'm over 6 feet tall - so the lady behind me asks if I could take my hat off because it's blocking her view, and I reply, 'No, I can't, I'm completely bald underneath...' She was SO NICE to me after that!!!

That was all nearly 5 'event-free' years ago... Of course, that doesn't mean I've had a boring life, it just means that my adventures have had to do with more pleasant things :>

God is good and got me through it all - even the part before the surgery, where I had a new tumor every 2 days in the lymph nodes nearby the tumor, and all I could do was wait the two weeks for my operation. He was there for me and I slept like a baby...

Answer 5

I had Hodgkin's Lymphoma. The worst part for me was going through high dose chemo and a stem cell transplant. I was stuck in the hospital, bored out of my mind for a month. I didn't have a lot of side effects to my chemo (thank goodness, I had 29 rounds of it in 8 months, 14 of those high dose)

BCNU is a real b*tch when given through high dose transfusion. It makes you feel like you went on a drinking binge the next day. Felt like I had such a hangover.

Answer 6

Congratulations! I am a two year testicular cancer survivor. I underwent two rounds of chemo (6 weeks). For me the fatigue was the worst. I guess my nausea medicine actually worked, because I only got sick once. I actually gained weight while I was on chemo because the fatigue was so bad I could only lay around all day.

Answer 7

even thogh it was purely vainity reasons, i missed my hair. i had 4 feet of hair before cancer and lost it during treatment (i did get to donate almost 3 feet of it before it was gone though). i got a hiphat and was happy for it, but i missed my hair.
i also hated being tired ALL THE TIME!
the predinose was a little fun though. i got so hungry and ate everything and a half out in the house!

Answer 8

Congrats and best wishes for your continued good health!
My son had an astrocytoma at age two. He's now 18.

Answer 9

First, congratulation on your successful treatment.

I will speak from my mother-in-law's aspect.

The puking. She felt so emotionally depleted, and the fatigue was a tight second

Answer 10

The fatigue was by far the worst.