Aa
worried
Hi Everyone thanks for ansewing questions for us. I am geno 1a and have and am at 33/48 having sides i can not tolerate muchmore do to work it seems like ever sence they canged my copagus to the riba im getting extrem rashes on my head. any way my doc says if i could make it to 36 weeks i have a 80% chance of it being cleard has anyone here cleard like that? also why does it take so long to clear this 8 and a half months you would think is long enough. what ios the prosees of the killing?
Got it! Yes, I think I will cancel my southwest tix. I am sure I could find a few of those places here in SF, if I wanted to. Perhaps green streaks will cover that gray...
Trust me when I tell you that this bleaching is not what you're looking for. I tease my pal Forseegood about being from LA, and I posted a link for her about a salon where gals go to have the chocolate doughnut turned into a glazed. The ol' bowneye made blonde. The Hersey Highway repaved in Vanilla. The walnut replaced with a pecan. I trust you get the drift.
No reports back from forsee on comfort or results. Suggest you wait for her updates before calling Southwest Air.
No reports back from forsee on comfort or results. Suggest you wait for her updates before calling Southwest Air.
C'est tout bon, mi amiga buen. C'est tout bon.
No worries. Just pokin' some fun.... what else is new, right?
Hope you're doing well down there kiddo. The lead up to tx is a difficult time -- take it easy and do what I used to be able to: Go with the flow.
...........Ummmmmph....
No worries. Just pokin' some fun.... what else is new, right?
Hope you're doing well down there kiddo. The lead up to tx is a difficult time -- take it easy and do what I used to be able to: Go with the flow.
...........Ummmmmph....
Goofydad, Now I am intrigued with the 'solutions' you had for the bleaching etc. I am interested too, why you mentioned all the guys in your post? Can you post or give the link. No I am not all gray that is why it looks very ugly to have these roots.
Forsee; I am a natural blonde and have never even thought of another color. Oh my, it just gets better, huh. perhaps the coloring will make it all fall out anyway and then I won't have to worry. Some of the wigs look good... Looking forward to getting my thick curly hair (as it is) does make me feel better.
Forsee; I am a natural blonde and have never even thought of another color. Oh my, it just gets better, huh. perhaps the coloring will make it all fall out anyway and then I won't have to worry. Some of the wigs look good... Looking forward to getting my thick curly hair (as it is) does make me feel better.
well, I personally wouldn't do bleach, per se, on my hair while on chemo drugs...but I have heard of women who have and they didn't report back anything one way or another, this was on boards...it's just a whole lot of chemicals for your body to process...and the fact that your skin becomes so sensitive on meds...I can imagine your scalp go Aiiieeeee!!!!but then, you might have stronger skin of course...
yeah, that gives me pause too, who wants grey roots! you know there are some dyes that are pretty benign, some from Paul Mitchell, they don't have amonia and many chemicals, have you thought about going to another darker color for the duration? You might like the look! belive me, I've thought of wigs too, they have some really innovative ones where they are half wigs that fit under your head around your ears, and the top of your hair is your own natural hair...I just keep thinking about what so many have said, after some time your hair grows in thicker and nicer than before!
Goof: I have never been annoyed by any of your hair talk, au contraire, mon frere! jamais, jamais!
Bemused? yes? intrigued on a clinical level? yes...but never annoyed!!! he he he...But I'll tell you of a *real* hair fetishist...
One time my girlfriend and I...we were in our mid-twenties I guess... we were sitting in a darkened movie theatre just watching a movie...she had really long beautiful hair, as did I, if I don't say so myself, but I would tuck my hair in back of me, she was so proud of her hair, that she used to just swing it everywhere!
Anyway, some creep cut her hair while she was engrossed in the movie I guess, he prob was sitting behind us...he cut about 5 inches off the bottom of it in the back, YUCK! what a weirdo...when she reported it to the police, they told her that this was not uncommon and there are hair fetishists out there...boy I tell ya, it takes all kinds!
yeah, that gives me pause too, who wants grey roots! you know there are some dyes that are pretty benign, some from Paul Mitchell, they don't have amonia and many chemicals, have you thought about going to another darker color for the duration? You might like the look! belive me, I've thought of wigs too, they have some really innovative ones where they are half wigs that fit under your head around your ears, and the top of your hair is your own natural hair...I just keep thinking about what so many have said, after some time your hair grows in thicker and nicer than before!
Goof: I have never been annoyed by any of your hair talk, au contraire, mon frere! jamais, jamais!
Bemused? yes? intrigued on a clinical level? yes...but never annoyed!!! he he he...But I'll tell you of a *real* hair fetishist...
One time my girlfriend and I...we were in our mid-twenties I guess... we were sitting in a darkened movie theatre just watching a movie...she had really long beautiful hair, as did I, if I don't say so myself, but I would tuck my hair in back of me, she was so proud of her hair, that she used to just swing it everywhere!
Anyway, some creep cut her hair while she was engrossed in the movie I guess, he prob was sitting behind us...he cut about 5 inches off the bottom of it in the back, YUCK! what a weirdo...when she reported it to the police, they told her that this was not uncommon and there are hair fetishists out there...boy I tell ya, it takes all kinds!
Ya know - I've offered up some inovative ideas to the gals here, dealing both with bleaching products and ways to hide bald spots. The reactions were decidedly mixed (my pal Forseegood was particularly unreceptive but FLguy seemed intrigued). Anyway, I gotta conclude my ideas really 'stunk'. I'm probably best to refrain from posting the links again. It's too bad too. This was some cutting edge stuff.
Good luck on the hair though. Someone will know what to tell you. BTW, are you a 'true grey'? ;-)
Good luck on the hair though. Someone will know what to tell you. BTW, are you a 'true grey'? ;-)
thanks for everyones information my doctor did not have me test till 3 months after I started. my biopsy was a grade 1 andmy viral load was 50,000 type 1a I think I could of had this for 13 years.
NY: I used to wear the "stinky old lady" stuff at night too. I bought them used off the internet from a Grandma in Jersey City. I liked to put them on under my PJs, but my wife made me stop. Said it gave her the creeps for some reason.
clinken: There are basically two overlapping schools of thought on how this stuff works. One says the drugs kill off all the virus in your system -- it's essential that every single bug is erradicated. The other has it that the job of the drugs is to train and strengthen your immunse system against the virus so that it can hold it's own once the drugs are withdrawn. In either case, it can take a long time after the virus can't be detected in bloodwork before you can hold your own without drugs - which is why most treat for 48 weeks.
80% chance at 36 weeks seems awfully optimistic to me. Do you know when in your treatment the virus first became undetectable?
clinken: There are basically two overlapping schools of thought on how this stuff works. One says the drugs kill off all the virus in your system -- it's essential that every single bug is erradicated. The other has it that the job of the drugs is to train and strengthen your immunse system against the virus so that it can hold it's own once the drugs are withdrawn. In either case, it can take a long time after the virus can't be detected in bloodwork before you can hold your own without drugs - which is why most treat for 48 weeks.
80% chance at 36 weeks seems awfully optimistic to me. Do you know when in your treatment the virus first became undetectable?
Oh my GOD you kill me. Just when I think it can't get any lower hahahahahahahah there you are to slay me!
I've always thought the Interferon KILLS the virus and the RIBAVIRIN stops it from replicating. That was my understanding of how it works anyways.
Whatever as long as it WORKS ... I'll take it! :)
I've always thought the Interferon KILLS the virus and the RIBAVIRIN stops it from replicating. That was my understanding of how it works anyways.
Whatever as long as it WORKS ... I'll take it! :)
Agreed the two views overlap -- in fact I trie to say that :) The point of dispute seems to be whether there can be viable virus in the system when the drugs are withdrawn and still have the expectation of SVR.
ahhh,but the point of interest is the old lady stuff...why is it sticky?? has it gotta be from jersey? sick minds are suddenly stimulated....so sorry that your wife can't get into the spirit of yur twisted frolic...yu may need professional help and i just happen to know a few ladys that could share your enthusiasm;plus expenses of course...sudden downtime in washington of late...
You know it's true the rash is completely gone and I have no itches but ONLY if I keep up putting on the goop. As soon as I stop for a few days......comes sliding back in. Hate it.
So...I wear the "stinky old lady" stuff at night and the regular Aveeno during the day to work. I am sure the GB is the thing that is healing it but - I started to get too nervous about smelling.
I remember in the beginning of tx not being able to get away from that med smell and don't know if it LEFT or if it's still wafting out but we just don't notice...so I dont wanna smell like menthol on top of it too! hahah
So...I wear the "stinky old lady" stuff at night and the regular Aveeno during the day to work. I am sure the GB is the thing that is healing it but - I started to get too nervous about smelling.
I remember in the beginning of tx not being able to get away from that med smell and don't know if it LEFT or if it's still wafting out but we just don't notice...so I dont wanna smell like menthol on top of it too! hahah
Ha jim , howare things goin? Jim my scalp is startin to shed and it's breakin out . I'm afraid I'm gettin psoriasis. My mom has had it for years and I'm wonderin if it's in my genes . Maybe the drugs are bringin it to the surface. Was wonderin , did ya have this problem before the tx ? Got enough sx's , now this .
clinken, you are most likely suffering due to the anemia, see if you can convince the dr to give you epogen if your hgb is below 11. Many of the studies give procrit when it drops to 12, why do our drs wait until it is 10 is beyond me. Get some good painkillers and epogen, or you wont make it until the end.
Sorry about your scalp. Psoriasis often does run in families and the interferon may indeed be bringing psoriasis to the suface although you will need a diagnosis from a good dermatologist because many skin conditions can mimic each other.
In my case, I did have pre-existing psoriasis but nothing near the magnitude what I experienced on treatment.
In regards to the scalp, my breakouts were psoriasis and seborrhoeic dermatitis earing the diagnosis of sebopsoriasis. It
started on my chest and then spread to neck, scalp, face -- where the sebaceous glands are located. Characterized by a red rash, flaking in parts, and often itching with characteristic psoriatic lesions here and there.
The thing that worked best for my scalp was a short-course treatment of Olux Foam followed later by less potent topicals including immunosuppresants such as Elidel, with Olux Foam still used on weekends until the leisons subsided.
In any event, that's what worked for my scalp psoriasis but as I mentioned earlier, you really need a diagnosis because you may have something entirely different.
BTW don't know how much hair you have but with psoriasis of the scalp sometimes less is more and none is the best because psoriasis often improves during the summer months because of sun exposure and the less hair in the way the more exposure. Also, sometimes the hair follicles themselves become an irritant. So -- if you've ever considered that buzz cut look -- now might be the time :)
All the best luck, I know how difficult skin problems can be on top of anything else and you have all my sympathy and prayers.
-- Jim
PS If you like matching pictures/symptons with diagnoses, the best derm web site I've found is: http://www.dermnetnz.org/
Just be aware that a lot of skin conditions can mimic each other and biopsy is sometimes needed for a definitive diagnosis. I've also found that derm's hate it when you come in telling them what you think you have even though you end up being right :)
In my case, I did have pre-existing psoriasis but nothing near the magnitude what I experienced on treatment.
In regards to the scalp, my breakouts were psoriasis and seborrhoeic dermatitis earing the diagnosis of sebopsoriasis. It
started on my chest and then spread to neck, scalp, face -- where the sebaceous glands are located. Characterized by a red rash, flaking in parts, and often itching with characteristic psoriatic lesions here and there.
The thing that worked best for my scalp was a short-course treatment of Olux Foam followed later by less potent topicals including immunosuppresants such as Elidel, with Olux Foam still used on weekends until the leisons subsided.
In any event, that's what worked for my scalp psoriasis but as I mentioned earlier, you really need a diagnosis because you may have something entirely different.
BTW don't know how much hair you have but with psoriasis of the scalp sometimes less is more and none is the best because psoriasis often improves during the summer months because of sun exposure and the less hair in the way the more exposure. Also, sometimes the hair follicles themselves become an irritant. So -- if you've ever considered that buzz cut look -- now might be the time :)
All the best luck, I know how difficult skin problems can be on top of anything else and you have all my sympathy and prayers.
-- Jim
PS If you like matching pictures/symptons with diagnoses, the best derm web site I've found is: http://www.dermnetnz.org/
Just be aware that a lot of skin conditions can mimic each other and biopsy is sometimes needed for a definitive diagnosis. I've also found that derm's hate it when you come in telling them what you think you have even though you end up being right :)
Thanks there jim , da-n tx puts us thru some stuff don't it . Well looks like we got to see a dermatologist , never seen so many docs at once. I keep the hair short , especially now , the less I have to mess with in the mornin the better . I believe I'll have to get a bigger med chest the way things are goin here .
The nurse told me not no use strong things on my hair or wash it too often. Does this mean my gray roots have to go without color? Bald and a wig could become a better option.
Anyone of you have problems with bleaching hair. Hey, I am a California girl, I have to be blonde! LOL
Anyone of you have problems with bleaching hair. Hey, I am a California girl, I have to be blonde! LOL
Not as frequent but still there. I'm trying to schedule a stress cardiogram within the next couple of weeks as well as a chest x-ray, but I doubt very much if it's my heart or anything too serious. Probably muscular, reflux related, digestive, or post-tx "adjustments". Thanks for asking.
-- Jim
-- Jim
New York girl has some very good thoughts.
That 36 week/80% figure is probably based on a theoretical model with a number of variables. The full-course is most probably the better choice for increasing your odds of SVR.
I can emphasize with your severe head rash and had simlar problems myself. You might want to see a dermatologist to diagnose what exactly is causing the problem. It may be what is called "riba rash" or it may be something else. In my case my head rash was diagnosed as sebopsoriasis. A short course of Olux foam, followed by less potent topicals and special shampoos helped me a lot. But again, you may have something else and that's why a diagnosis is important. Meanwhile, yes, as NY Girl suggests, stay away from strong shampoos and especially hair dyes until you see a doctor.
Regarding the change in ribavirin -- as NY Girl suggests, it's probably not the change from Copegus to generic Ribavirin and the appearance of the rash probably coincidental. Still, if your insurance allows, why not see if you can switch back to Copegus, when you had no problems.
All the best luck.
-- Jim
That 36 week/80% figure is probably based on a theoretical model with a number of variables. The full-course is most probably the better choice for increasing your odds of SVR.
I can emphasize with your severe head rash and had simlar problems myself. You might want to see a dermatologist to diagnose what exactly is causing the problem. It may be what is called "riba rash" or it may be something else. In my case my head rash was diagnosed as sebopsoriasis. A short course of Olux foam, followed by less potent topicals and special shampoos helped me a lot. But again, you may have something else and that's why a diagnosis is important. Meanwhile, yes, as NY Girl suggests, stay away from strong shampoos and especially hair dyes until you see a doctor.
Regarding the change in ribavirin -- as NY Girl suggests, it's probably not the change from Copegus to generic Ribavirin and the appearance of the rash probably coincidental. Still, if your insurance allows, why not see if you can switch back to Copegus, when you had no problems.
All the best luck.
-- Jim
Did your rashy stuff finally get better, or is it just under control with the goopy stuff?
I am both a Geno 1A and a 1B so I understand what you mean. I'm also on week 33 of 48 (which might change to 72 I am not sure).
My brother in law was undetectible from week 4 to 8 1/2 months. He decided he couldn't hack it anymore and quit. Doctor advised not to.
He relapsed within six months and now has to start ALL OVER AGAIN from the beginning and do the 48 weeks.
To me - as far as we ARE...I'd keep on going and just get it over with and have the better odds.
I don't think there is any difference between Copegus, Ribavirin, Rebetol etc. really except the brand name....
I know I had terrible rash problems BAD and what helped was moisturizing day and night but since this is your head maybe you need to stop using a harsh shampoo and using some real conditioning stuff or something...I don't know.
Please think about stopping...it might not bea good idea as rough a road as it is you don't want to do it TWICE?
My brother in law was undetectible from week 4 to 8 1/2 months. He decided he couldn't hack it anymore and quit. Doctor advised not to.
He relapsed within six months and now has to start ALL OVER AGAIN from the beginning and do the 48 weeks.
To me - as far as we ARE...I'd keep on going and just get it over with and have the better odds.
I don't think there is any difference between Copegus, Ribavirin, Rebetol etc. really except the brand name....
I know I had terrible rash problems BAD and what helped was moisturizing day and night but since this is your head maybe you need to stop using a harsh shampoo and using some real conditioning stuff or something...I don't know.
Please think about stopping...it might not bea good idea as rough a road as it is you don't want to do it TWICE?
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