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I'm glad people are doing this because all of you are important to me and my CRS (can't remember $hit) is really, really bad; don't know if that's a function of my age (61) or chemo/stress. It's been coming a long time, so it's probably both.
You guys are my heros; you're all so brave and matter-of-fact. I, on the other hand, am a BIG BABY.
@chele: I'm taking Taxol, too. That explains why my joints hurt so bad, that one 24 hour period, about two days after my first chemo. Not looking forward to that again.
Half way home. I'm glad you don't feel too badly. Hang in there!
Thanks. Just like last time, the pain hit me last night. It was horrible. At least I was mentally prepared for it. I guess it's the Taxol. Really bad pains in the joints, and nothing really helps. Or I can't imagine what it would be like without the Ibu & Tylenol. Today, too..just crying it hurts so bad. I was able to sleep periodically last night due to the Melatonin.
Get you some good drugs girl! Good grief! No reason to sit and cry. Get some Dilaudid or something. If your oncologist/nursing doesn't prescribe it see your GP (if you have one). Life's too short to suffer. One good thing about cancer is doc's are usually pretty generous with the "good stuff".
1. How many treatments or series of treatments, have you been scheduled and have you had?
DH had 12 cycles of folfox + avastin (that's oxaliplatin, Luecovorin, & 5FU in a take-home pump for 72 hours). Now he's on weekly infusions of erbitux and tri-weekly irinotecan for 4 months (he's about 1 month in, he's had his second dose of iri)
2. Did each treatment have the same effect or were they different?
he did really well with the treatments up to about 1/2way. His midpoint PETct was outstanding, but something happened shortly afterwards and it stopped being effective. We didn't know until he finished though, and we were back to square 1. Mostly it's the side effects that got slowly worse.
3. What were some of the effects of your treatments?
the oxali can be brutal. It causes taste changes, which took a few times to catch on, hair thinning and neuropathy in his fingers and toes. The avastin caused minor nose bleeds when he blew his nose, esp in the morning. The neuropathy didn't start until around 1/2way through the folfox treatment and got steadily worse. The annoying thing is that he finished that round at the end of March and still has the neuropathy (actually has been getting worse, but should be heading towards peak soon and hopefully taper off!). the nose bleeds are nearly gone now. Chemo mouth.. well, he's trying to get back to more normal, but there's still things he used to love that he wont' touch now -even the thought of them! It's kinda annoying: there's a great deli in the onc's building and this week the smell was making him gag.
4. In hindsight, what recommendations would you make to others?
He feels exercising has been really helpful. He still goes on his daily walks with his brother - a little over 3 miles in an hour. He feels that the exercise has kept his circulation good so he seldom had any trouble with nausea or fatigue (except when the 5Fu pump finished) and it took quite a while for the neuropathy to set in. so.. mostly, make yourself eat as best you can - even if you don't feel like it- cause you're body needs it, and get some sort of aerobic exercise as best you can.
Re: chemo mouth. I haven't exerperience this (yet) because I threw away my toothpaste and mouthwash (vanilla, which I loved) and replaced it with baking soda to brush teeth (after every meal) and a mouthwash of 1/2 teas. baking soda and 1/2 teas. salt. I thought I'd hate this but don't. Was recommended in the papers I got when this started.
Don't think I'll go back to chemical version of toothpaste and mouthwash.
WannaComeHome - ugh, I have had chemo mouth real bad the last two treatments and it is starting in now with #5. It's not really what I eat, it just tastes like something died in my mouth 24/7 at its worse. I have actually gained weight during this - I try to eat stuff just to get the taste out of my mouth. My onc keeps saying that I'll feel better if I exercise, he would love your husband!
mvintar - I may try your recipe for toothpaste. I hate baking soda but it's worth trying and seeing if it helps with the taste. Thanks for posting this.
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