Aa
Dryness
Currently on shot #19 of 48. I've been pretty dry in my mouth, lips, throat and skin from the start. Biotene toothpaste and mouthwash are helpful, as is vasoline on my lips, throat lozenges, betamethasone valerate is good on some itchy skin areas. Drink plenty of H2O. With cold/dry weather setting in up here in the northeast U.S., I was wondering if a humidifier would be of much help or if it harbors bacteria and can cause other problems? Any of you folks use them or have increased infections because of them? Thanks in advance.
I don't do much driving except around town.....and there are times I realize I'm not at my sharpest. Hubby won't be able to come with me because he only gets one day off at a time, but I'm sure I'll be OK to drive. I hold up pretty well as long as I am eating and drinking the water. Heck, I'll never get there with all the potty breaks!
You must have some nice leaves down there by now. We are just starting up here. It is beautiful!
ambush :)
You must have some nice leaves down there by now. We are just starting up here. It is beautiful!
ambush :)
Yup, no matter what surprises it has in store for us, this tx is us actively doing something; it sure beats all of the waiting, all the worries we can imagine before tx.
How do you feel driving these days? Until recently I was uncomfortable driving more than 45 minutes... had difficulty concentrating. Last weekend I was fine for 2 hours, plus; had to give hubby a chance to drive our "new" car (3 months old).
Indian Summer is so beautiful! Maj Neni
How do you feel driving these days? Until recently I was uncomfortable driving more than 45 minutes... had difficulty concentrating. Last weekend I was fine for 2 hours, plus; had to give hubby a chance to drive our "new" car (3 months old).
Indian Summer is so beautiful! Maj Neni
No plans to head down yet. My daughter is coming home this weekend and then hopefully I'll take the trip in November sometime. Would love to see New York all "gussied up" for the holidays. I'm doing well ~ numbers are holding steady now. The weeks go by quicker than I thought they would and that makes me smile.
ambush :)
ambush :)
You sure are "unique" and definitely belong in the "very special people" category. Glad to hear you're feeling pretty good. Sounds like your doc is good at keeping up with all the fluctuations. Must be insane keeping track of what shot to take on what day, at what time. I found out Tuesday that my GI is GONE (he was chief at Strong) and I'm losing my PA the end of this month. Must have been a big shakeup somewhere. Would have been nice to get through this with one doc. I hope whoever they put me with has lots of experience with HCV. You're almost there.........keep up the good fight.
ambush :)
ambush :)
Hi, are you planning any trips to the Big Apple yet?
I know what you mean about finishing with one doc. When I went to FL in the summer, I thought I needed to connect with a GI down there. My doc wrote a note and Rx to give to the FL doc; then he asked me to ask if they needed a partner down there. I shot back immediately in horror, "Not til we're done."
I hope all's well for you!
Maj Neni
I know what you mean about finishing with one doc. When I went to FL in the summer, I thought I needed to connect with a GI down there. My doc wrote a note and Rx to give to the FL doc; then he asked me to ask if they needed a partner down there. I shot back immediately in horror, "Not til we're done."
I hope all's well for you!
Maj Neni
ahhh yesss - reality.. I remember it well - it's not really used much around here anymore.
At least you can relax about the big California circus! The dye is cast and it's reality time. Hope it doesn't bite.
The extra Procrit puts a little "lead" in my legs, but stopping is not an option, Will!
The extra Procrit puts a little "lead" in my legs, but stopping is not an option, Will!
Glad to see you can stay on tx. Sounds like your on top of this. I'm amazed at how you (and some others)can keep up on all the info. I struggle just to understand it then the brain fog kicks in and I forget what I just learned.
Willing- I see what you mean, it's not to encouraging but I have 4 months until week 52 to decide what to do. I'm still leaning toward extended tx but I'll keep reading. If you find any more articles I would love to read them.
Have a good day. LL.
Willing- I see what you mean, it's not to encouraging but I have 4 months until week 52 to decide what to do. I'm still leaning toward extended tx but I'll keep reading. If you find any more articles I would love to read them.
Have a good day. LL.
Back from the doc. We went through the long questionnaire of sides today, but frankly I feel pretty good.
For the white count (WBC 0.8 yesterday, ANC 0.3), I am going back up to 2x/week Neupogen 300 units, Sun. & Wed. so I can stay away from my Friday night Pegasys shot.
My RBC was also low (Hgb back at 9.0 yeesterday), so we're raising the Procrit from 40,000 units/wk to 60,000, in one shot, Mondays. Since I took 40K Procrit yesterday, I shot another half bottle in just now. I'm also dropping riba - reluctantly - from 3am+3pm to 2am+2pm; I declined to go down to 600mg/day... Next CBC will be next Monday, but as long as numbers don't drop, we won't expect too much change yet.
Next Dr.Appt. is on Oct.27 unless something comes up, and I'm not the type to keep bad sides secret. Oct. 27 is in week 36, and I've got the ok to get another very sensitive PCR - probably Heptimax - then.
Apparently I'm pretty unique, and the P.A. asked if she could write a paper about me after tx, as soon as she has time. Don't all you newbies go thinking that you'll be going off the deep end with your blood counts like I am; this is reserved for a few very special people!
Thanks for your interest. Forward we go, one day at a time!
Maj Neni
For the white count (WBC 0.8 yesterday, ANC 0.3), I am going back up to 2x/week Neupogen 300 units, Sun. & Wed. so I can stay away from my Friday night Pegasys shot.
My RBC was also low (Hgb back at 9.0 yeesterday), so we're raising the Procrit from 40,000 units/wk to 60,000, in one shot, Mondays. Since I took 40K Procrit yesterday, I shot another half bottle in just now. I'm also dropping riba - reluctantly - from 3am+3pm to 2am+2pm; I declined to go down to 600mg/day... Next CBC will be next Monday, but as long as numbers don't drop, we won't expect too much change yet.
Next Dr.Appt. is on Oct.27 unless something comes up, and I'm not the type to keep bad sides secret. Oct. 27 is in week 36, and I've got the ok to get another very sensitive PCR - probably Heptimax - then.
Apparently I'm pretty unique, and the P.A. asked if she could write a paper about me after tx, as soon as she has time. Don't all you newbies go thinking that you'll be going off the deep end with your blood counts like I am; this is reserved for a few very special people!
Thanks for your interest. Forward we go, one day at a time!
Maj Neni
Thanks for your responses. I just got the Procrit last week in the mail so it really hasn't kicked in yet. With regards to the AASLD meeting, it may conflict with the World Series date when the Red Sox will be opening up a can of whoop-ass on either the Cubs or the Marlins. Indeed the HCV discussions will be interesting, however, watching the recent Red Sox games has jacked me up with more life, excitment and energy to the point that I may have to significantly reduce my Procrit dosage! Actually, I'll try to get in there and check it out if I'm up to it. Maj, did your blood work ever stabilize or simply drift up and down the whole 33 weeks? layla, I just tried Vasoline intensive care lotion today-not bad stuff-thanks. giddyup, you sound like me with the dry mouth at night. I know I snore and that makes it worse. I wake up every hour to sip on some water.
Way to go Maj! Your toughness truly inspires and I need some inspiration at this point. Hope the new Procrit/Neupogen dosages restabilize your CBCs - you don't have too far left to go. The .8g riba may not be "optimal" but it was the standard for a long time.
Raheem - you gotta be kidding! you'd pick a good baseball game over a stuffy room of german GI's pompously arguing about statistics..geez I just don't know about some people.. Well, just in case you don't make it here's the <a href="http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={59C5D3F8-7761-41F4-8C09-0158C9152B37}&MKey={201E3AB1-B366-4CFC-879B-196DF41D3A21}&AKey={704CF973-D8A8-4909-A16B-9F7D9FB76BC7}&SKey={B95B7700-4CCE-45A4-8AB0-70F91E33D429}">abstract</a>.
Layla - as you can see, it's a bit flawed, but doesn't do much to bolster the 72-week argument..
Raheem - you gotta be kidding! you'd pick a good baseball game over a stuffy room of german GI's pompously arguing about statistics..geez I just don't know about some people.. Well, just in case you don't make it here's the <a href="http://www.abstractsonline.com/viewer/viewAbstract.asp?CKey={59C5D3F8-7761-41F4-8C09-0158C9152B37}&MKey={201E3AB1-B366-4CFC-879B-196DF41D3A21}&AKey={704CF973-D8A8-4909-A16B-9F7D9FB76BC7}&SKey={B95B7700-4CCE-45A4-8AB0-70F91E33D429}">abstract</a>.
Layla - as you can see, it's a bit flawed, but doesn't do much to bolster the 72-week argument..
Raheeem,I have forced air heat in my house and have had a difficult time in years past waking up with dry mouth. One year we had a humidifier and it helped alot. Then it started leaking and stained the wood floor.Any way as soon as I have the energy and can remember. I am definatly going to by a humidifier. My mouth is dry all night and I have to wake up often to take a sip of water.It would be very difficult for me when the heat goes on without a humidifier.
My WBC and ANC drifted down in the first few weeks of tx, but the ANC stayed around .700 or a bit higher, so I didn't start Neupogen until ~week 15. At first I had 3 shots/week, and my WBC came up radically. We reduced it to 2x/wk and finally to 1x, and the WBC/ANC has gone down radically since then. I think there is a correlation, and hopefully 2x 300 units of Neupogen/week will carry me.
For the RBC's and Hemoglobin: my baseline was Hgb over 13. After one week of tx it was still in the normal range, Hgb over 12, but then THUNK... down into the 9's. I've been on Procrit 40,000 since week 3, back in March. Even on Procrit, I drifted down to Hgb 7.2 in July... had to take a ribavirin vacation for almost 3 weeks; I actually almost got into the normal range one of those weeks. I went back on Riba gradually, and Hgb dropped again. Doc would like me to stay up around Hgb 10; see modifications in my previous post.
Stay tuned. Maj Neni
For the RBC's and Hemoglobin: my baseline was Hgb over 13. After one week of tx it was still in the normal range, Hgb over 12, but then THUNK... down into the 9's. I've been on Procrit 40,000 since week 3, back in March. Even on Procrit, I drifted down to Hgb 7.2 in July... had to take a ribavirin vacation for almost 3 weeks; I actually almost got into the normal range one of those weeks. I went back on Riba gradually, and Hgb dropped again. Doc would like me to stay up around Hgb 10; see modifications in my previous post.
Stay tuned. Maj Neni
Willing, glad you posted that info. I'll look forward to the results on the 48 or 72 weeks of tx. Where can I look for this?
Raheem, I also found the vaseline intensice skin cream to help if I put it on my skin twice a day.
Majneni, Sorry to hear of the low labs. I sure do hope all goes well for you tomorrow. LL
Raheem, I also found the vaseline intensice skin cream to help if I put it on my skin twice a day.
Majneni, Sorry to hear of the low labs. I sure do hope all goes well for you tomorrow. LL
boy Maj - some people get all the breaks! I'm really sorry the meds are on the warpath again. I've never seen any stats on adherence more fine-grained than the "80% of the meds 80% of the time" <a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12360468&dopt=Abstract">rule</a>. As I'm sure you're scrupulously conscientious unless ordered off, these interruptions hopefully won't have a chance to amount to a significant factor. The 2-log drop + <50iu by 12 puts you in a very encouraging category - I hope nothing else interferes with your tx at this point.. Best wishes for your meeting with the Dr. tomorrow - I'll be thinking of you.
No. I don't know if this AASLD will be webcast but I don't believe any of the previous ones were. There are many parallel sessions so I sort of doubt it..
No. I don't know if this AASLD will be webcast but I don't believe any of the previous ones were. There are many parallel sessions so I sort of doubt it..
Hi, again,
In all your reading, have you run across anything correlating stopping tx early at various points and odds of SVR? Particularly for genotype 1's? I'm a 1b; undetectable @ <50 at 12 weeks and on Heptimax at 24 weeks; now in week 33.
I had my draw today, and they called me in to see my doc tomorrow am; my WBC has tanked again (0.8). I'm on Neupogen 1x/week, but I'm still on a rollercoaster; I hope I can just up the Neupogen dose to 2 or 3x/wk. Just another nerve-wracking day ahead... Thanks.
Maj Neni
In all your reading, have you run across anything correlating stopping tx early at various points and odds of SVR? Particularly for genotype 1's? I'm a 1b; undetectable @ <50 at 12 weeks and on Heptimax at 24 weeks; now in week 33.
I had my draw today, and they called me in to see my doc tomorrow am; my WBC has tanked again (0.8). I'm on Neupogen 1x/week, but I'm still on a rollercoaster; I hope I can just up the Neupogen dose to 2 or 3x/wk. Just another nerve-wracking day ahead... Thanks.
Maj Neni
Do you know if this conference might be webcast, as the NIH Consensus Conference was last year? That was fascinating.
Hi Raheem - hope the Procrit is making your life a little more manageable. As I recall you're in the Boston area which is where this year's AASLD conference is. If still thinking about extented-tx and you're free Sat. afternoon, Oct.25 from 5:30-8pm you may want to drop in on abstract 854 "COMPARISON OF 48 OR 72 WEEKS OF TREATMENT WITH PEGINTERFERON ALFA-2A (40KD) (PEGASYS
Hi, Raheem,
Keeping the humidity up a bit can help you in these trouble areas, and it makes the house feel warmer and more comfortable. It's a delicate balance: just enough humidity will save the furniture, too, but too much will cause molds to flourish.
You have to be very careful to follow the directions with the particular humidifier. Filters may need to be sanitized or replaced, water changed, reservoir cleaned, etc. on a very regular basis (small ones need attention daily). My kids had humidifiers in their rooms for years; that was a lot of work, but I think we were able to keep them sanitary. Eventually we got a humidifier (with a water line) added into the ductwork near our furnace; this has been fine, and only needs seasonal maintenance; it has a humidistat that you can adjust.
Conversely, in the summer we have to dehumidify to prevent mold...
Maj Neni
Keeping the humidity up a bit can help you in these trouble areas, and it makes the house feel warmer and more comfortable. It's a delicate balance: just enough humidity will save the furniture, too, but too much will cause molds to flourish.
You have to be very careful to follow the directions with the particular humidifier. Filters may need to be sanitized or replaced, water changed, reservoir cleaned, etc. on a very regular basis (small ones need attention daily). My kids had humidifiers in their rooms for years; that was a lot of work, but I think we were able to keep them sanitary. Eventually we got a humidifier (with a water line) added into the ductwork near our furnace; this has been fine, and only needs seasonal maintenance; it has a humidistat that you can adjust.
Conversely, in the summer we have to dehumidify to prevent mold...
Maj Neni
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