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Ask the oncs if you can take L-arginine. I take it to increase the circulation in my feet which had caused neuropathy due to diabetes. 4 grams/day was recommended by my podiatrist and after a month, my toes feel better, i.e., I can actually feel them. Not sure if the same principle is at work in chemo-caused neuropathy but if they OK it, can't hurt to try.
1. How many treatments or series of treatments, have you been scheduled and have you had?
I went through 6 cycles of cytoxin, methodrexate and 5fu. They started me with taxol and taxetere but I had reactions to them. The methodrexate and 5fu drugs are older drugs.
2. Did each treatment have the same effect or were they different?
As time went on, I felt weaker.
3. What were some of the effects of your treatments?
The day of treatment, I wanted to eat everything in sight. The next few days, I had loss of appetite. I felt queasy a lot but only got nauseated 2 times. My hair thinned out some at first but after treatment, it thinned out a lot. I was never completely bald, just thinned out. Still had to wear scarves/bandannas. I was mainly very tired and weak. I had to force myself to get up and do something easy like brush my teeth, I was so worn out.
4. In hindsight, what recommendations would you make to others?
Everyone is different so what one experiences, the other may not. I pretty much maintained my weight minus 8 pounds during treatment. I tell this to folks now that I know of that are going through treatment.... Eat, Eat, Eat!
If you don't feel like eating something, at least make a protein type shake to drink. I've never drank so much water in my life but when you're going through treatment, chemo dehydrates and more liquid is needed. I forced myself to drink as I was told if I didn't, I would end up in the hospital. That was incentive enough. It made me queasy but better to be queasy or sick in my opinion than end up dehydrated and go to the hospital. Keep yourself hydrated and I think that's half of the solution.
SouthernBelle- I'll ask about the L-arginine. I've read on the colon-club forum some people have done well with adding in some of the B vitamins. He says he thinks they're a little better today - but then he says that almost every day and it really doesn't seem that it's changing much.
Mvintar & Christina, glad that baking soda is working for you - I used it a long time ago for my gums and man it was nasty!!!! It's not that he complains his mouth tastes bad (btw: they stressed getting rid of any mouthwash or rinse that has alcohol in it! luckily both listerine & ACT have alcohol free versions. And biotene is good for fighitng dry mouth), it's the taste changes. for example, he used to love seafood.. now the thought of it turns his stomach.He will occasionally eat a hard boiled egg at lunch (if he remembers), but he can't deal with the idea of scrambled eggs! He used to eat a lot of fruit (apples & oranges mostly), now he's pretty iffy about them and keeps forgetting to put one in his lunch. So the chemo has altered his taste preferences. He's getting back to some things, but not back to where he was - yet.
Oh, I forgot in the side effects: the erbitux causes an acne-like rash, he got it really bad all over his face, neck, chest & scalp (the worse it is, the better the drug is working). the PA gave him an antibiotic and a gel that has really made a difference in managing the rash. The irinotecan (I'm pretty sure it's the iri) has made almost all his hair fall out.
yes! clindagel is one of the 2 they gave him for the rash. They have worked wonders! when the erbi rash first came out, he came in after his shower (where he had been scrubbing his face as usual -because that's the only way he knew to wash it) and he looked like he had measles!! big red welts all over his face & neck. I took the scrubby stuff away from him and told him to only use the lathering face wash. between that, the clindagel and the other antibiotic, the welts have receded a whole lot and just look a bit red and bumpy.
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.
The other piece of this which I omitted (sorry) is to use a soft toothbrush. I use an electric toothbrush, but an old head so it's very soft. I don't find it nasty at all; it's fine.
1. How many treatments or series of treatments, have you been scheduled and have you had?
Seventeen oral rounds of Temozolomide, with seven to go. The first 12 were done between February and December 2010; a recurrence was detected in September 2011, and I was put back on the drug in January 2011.
2. Did each treatment have the same effect or were they different?
Most treatments are fairly similar. I usually am nauseated and fatigued on the 4th and 5th day, as well as one day after taking it. They vary somewhat in the intensity of their side effects.
3. What were some of the effects of your treatments?
Nausea and fatigue on some days of the cycle; chronic constipation; probably a bit of brain fog.
4. In hindsight, what recommendations would you make to others?
Take your meds, especially for constipation. However, do not take a stimulant laxative any day when you are going to be taking chemotherapy, or one or two days after. Otherwise you will be VERY nauseated.
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