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Side Effects - Suggestions and Cures and Concerns
by NYgirl, Mar 19, 2006 12:00AM
It seems there are a lot of people that are new to or deciding on treatment so I thought perhaps we could do a thread for them on some cures to the things they will be experiencing.
While we don't know what will happen to anyone we can advise from our own experiences.
I know I've had really ODDBALL things happen (to the fact that I gave away my brand new antipersperant yesterday because quite simply I do NOT sweat at ALL any longer LOL) and have come running in here for help. I thought maybe it would be easier this way.
So I'll start with some sides and things that have helped.
-----------------------------
The Infamous RIBA RASH
Compared to the side effect everyone is always worried about (shot night) this seems small however my body is completely scarred from the itching before I found a solution.
riba rash is little tiny bumps that start out very very small and then begin to itch as if you have chickenpox. in fact that is what I think of them as. If you itch them alot they can get infected and then scar. Yuck that is what happened to me.
I found that using a GOOD moisturizer (such an Gold Bond Extra Strength Tiple Action Relief for Dry & Itchy Skin in the green bottle with a red top) has worked WONDERS. But you must realize the most important thing is to moisturize CONSTANTLY = when your body is covered constantly with moisturizer it seems to kill off the rash. Doing it once won't work.
As the treatment completely and totally dehydrates us drinking water constantly and moisturizing repeatedly is a NECESSARY thing to
Next.......
While we don't know what will happen to anyone we can advise from our own experiences.
I know I've had really ODDBALL things happen (to the fact that I gave away my brand new antipersperant yesterday because quite simply I do NOT sweat at ALL any longer LOL) and have come running in here for help. I thought maybe it would be easier this way.
So I'll start with some sides and things that have helped.
-----------------------------
The Infamous RIBA RASH
Compared to the side effect everyone is always worried about (shot night) this seems small however my body is completely scarred from the itching before I found a solution.
riba rash is little tiny bumps that start out very very small and then begin to itch as if you have chickenpox. in fact that is what I think of them as. If you itch them alot they can get infected and then scar. Yuck that is what happened to me.
I found that using a GOOD moisturizer (such an Gold Bond Extra Strength Tiple Action Relief for Dry & Itchy Skin in the green bottle with a red top) has worked WONDERS. But you must realize the most important thing is to moisturize CONSTANTLY = when your body is covered constantly with moisturizer it seems to kill off the rash. Doing it once won't work.
As the treatment completely and totally dehydrates us drinking water constantly and moisturizing repeatedly is a NECESSARY thing to
Next.......
Of course, you can wrap a scraf around your face -- a 3M mask works OK as well -- but the best solution I've found is a fleece ski mask made that can be found at icanbreathe.com
It really delivers warm, moist air on the coldest of days and best of all it's silk-lined, so no face irritation. And supposedly, it won't fog your glasses -- well, no product is perfect. LOL. They also make some other face masks as well, for pollution, etc.
The bad news is that they have been known to scare little children and dogs. LOL. The good news is that since they cover your face, no one will know it's you. :)
http://icanbreathe.com/shopsite_sc/store/html/page6.html
-- Jim
The way you just posted you sound down and I can surely understand that. Try and cheer up a little, like you tell me the spirit really helps you keep on top of all that is happening.
There is still a good chance that it will leave you after you stop tx. Did some research and it seem's there are many treating and about 2-3 months after finishing it left them.
Bob :)
http://mm.dfilm.com/mm2s/mm_route.php?id=2844682
I have to admit, figuring out for real this weekend that I have absolutely no pit perspiration at all any longer freaked me out. I was like wow I never thought of it but...so what is that about! At least I know I smell like Channel #5 and not BO! ;-)
Re: Mouth Bumps
I went out and got some Citrus Scope this weekend. The doctor advised using a baking soda/water mouth rinse for them and I thought Scope sounded better and it looked pretty. Well so far it appears to be helping with the mouth sores alot but man oh MAN that junk is so DISGUSTING! Pretty color and name aside yuck it's still poison!
I won't give up until I figure out a way around each and every one of these sides. They make treatment worse and we don't need them so now I'm on a warpath against not only the virus but them too!
GREAT post - as always.
How are your sides going? I posted somewhere yesterday that your xtra riba will take around 2-weeks to kick in. So be careful because functionally, you may only have half the dose you're taking in your system right now which can give you a false sense of well-being. Hopefully, you're having weekly CBC's until things your hgb curve flattens. Might also consider Procrit if you're upping the riba, or at least getting an rx through the insurance process.
-- Jim
To bad your didn't tell you and give you a choice. Will you do 48 weeks now?
Beagle
You know I'm on 1000 Riba even for my weight and on shot night and the next day I pop an extra one ... I call it ala Jimming
;-) well kidding about that but not the extra Riba. Since I started doing that is when I got the Un so I don't know if it mattered or NOT but I prefer to think it did.
I hope to God you are getting weekly CBCs with that high Riba consumption - God know that anemia argh uggh ahhh is just atrocious.
We worry about each other - that's why this place is so great.
The boss - well I have backed up EVERY single document I can find and typed out every thing I can think of inappropriate he's ever said getting ready. When he hears I am going to need time off for an operation holy COW the hammer will come down. The pig will probably try to put me on some stupid BS job again...- the last woman that had my job IS willing to go to court should I file anything on him because it all happened to her so I feel good about that but..I would be devastated to lose my job you know? I NEED the money NOW. But as with everything else we'll see how it goes.
I don't know if they are going to try medication or just cut it out and then medicate. I have to go to Nuclear medicine and have a test done. I found out my sister in law had hers out and she is fine so that is something to hold on to.
It's all such a cr*pshoot just like everybody says isn't it?
But you and me h3ll we are fighters and nobody can take THAT from us no WAY in the world. :)
I'm surprised to hear that 48 weeks is SOC in Europe.
I think Cuteus posted a link to a study that compared 48 to 24 for 2's/3's, and I think it came from Europe. I believe that was likely the start of the movement to shorter txs for g2/3.
The 2 studies that compared 12 and 16 weeks, Mangia and von Wagner respectively, against 24 weeks for 2/3's were conducted in Europe.
NYgirl, Common sense suggests that SVR rates would likely be somewhat higher for 2/3's who treat for 48 weeks over 24, but is it really worth it? I mean g1's would probably have higher SVR rates on 96 weeks too. But at what cost?
Here's another perspective:
Assume 100 g3 pts and a 24 week SVR rate of 50%.
Alt 1: Treat 'em all for 6 mos, and you have 50 years of tx. Now treat the 50 failures for 1 year and that's another 50 years, for a total of 100 years.
Alt 2: Treat the whole lot for 1 year from the get go, yielding 100 years of tx.
Note that any SVR rate over 50% for the 6 mos tx, ends up with Alt 1 producing fewer total tx months than Alt 2.
Also note that even at a 50% SVR rate, Alt 1 would probably be overall a more effective aproach.
There are subtleties to this that I didn't go into, like drop outs, but IMO, treating a 'typical' G3 for longer than 24 weeks doesn't make sense.
Of course, the 4 week RVR deal adds a whole-nother dimension. Since the majoriy of g3's reach RVR, not acheiving that would be something to consider. Of course, these are just the musings and ramblings of a layman.
What I don't get is why some statistician doesn't just come up with a formula that takes into account every factor (genotype, RVR, VL, age, etc. etc) and generate a score for any individual and let that score guide how long we treat.
I don't know about what they do in Europe BUT all the studies I've seen (and I think I have copies of all of them...) suggest that 24 weeks is as effective as 48 for 3s (they mean, there's not a statistically significant difference--of course, when one of us falls within the margin of error and 24 isn't enough, statistics aren't very reassuring.
OK, here's a new one for you. My genotype report says "3a f". Anyone ever heard of that? Probably means I need 162 weeks of treatment.
JIM: It makes complete sense to me that after spending so many months attacking your body, that it would take a little while to recover. I was talking with my doc about planning a big trip with my kids about a month after treatment stops and he told me that he would wait 3 months to be safe. He thinks that generally healthy, well-functioning people can easily take that long to recover. Hell, it took me months to recover from pregnancy and childbirth--and that was easy compared to this. OK, it's off to week 13 for me.... Solidarity, Deb
I have been drowning myself in water, and lotions and following every piece of advice I can. I pace myself b/c I have such a physical job, and I dont want to just drop (I am trying NOT to draw attention to myself while treating) I have had small dealings with the upper respiratory and the little bumps, and the insomnia, and all that, so far keeping things under control. My biggest whine is that I run out of breath sometimes. Just talking I will suddenly feel light headed, and a couple of times at work I just started spinning out while standing there doing really nothing, and I would hurry and lean against a counter so nobody would notice that I was starting to "tip over"
While my boss is aware that I am treating, I do not want to give him any amunition, so I must be tough, at least on the outside,.......they really dont have much heart, I am afraid I am only a number at work.
lilmoma
Oh Kalio, I think about you a lot. You're such a trooper. Last week was my worst week ever (thrush, bronchitis, car wreck). But now I feel like a normal OK chemo (everything is relative...). HOpe that Riba keeps its touch light for you!
Live your days full and serene, look forward to all you have in front of you, and smile at the realization that free of the virus the choices are no longer clouded.
Goof- How are you doing goofy me lord? I believe my post tx sentiments for you were covered when I jumped the gun with your finish date. AND YES- I did see your little post... 'let's not tell strator, he can be a possive sort.' Dog.
keep us posted and laughing.
lilmomma- My first 6 weeks or so because I was doing physical work, and a lot of bending and twisting, I kept a bottle of water by my side while I worked. When I got lightheaded I grabbed that first, then leaned.
be Well
Don