Happy New Year everyone! Back to work and thought I would take a few minutes to check on all.
Neil, what is the latest on you Pegasys tx? Sean, are you still waiting on your options and when is you next biospy? JJ, Wes, how is the end of treatment feeling?!!! MJ, where are you?!
Brought my dad home on Friday and will give pallative care. I think I will need to put treatment on hold a little while longer just to see how things will turn out in the next few months.
Haven't heard a thing from my doctors office so once gain I put my expectations up too high. Not that it would have made a difference right now but still! So much for customer service.
Hope ya'lls year is fruitful and prosperous!
Take care all,
Jeannie
joann jennings
01-06-2003, 12:07 PM
Jemah,
Glad to see you back on board...Hope the holidays were good to you and yours.... Your right on waiting on treatment till the time is good...otherwise it will be harder on you (and dad)...
I am in countdown...43 more days to go....treatment still is the same and I still am down a good part of the day after but I am preparing to come off treatment...I want the transision to be easy so I am starting to get back on track with what I use to do before treatmetns....I am walking again and working out very lightly...when i was on treatment I didn't have the energy....the energy I did have was used up on house work and children work.....
I had a test done last week or so and it came back still non=-detectable....so I am excited....
I know the road I still have in front of me....with remission and keeping a watchful eye on my hep c but I'll tell you I am ready to put this behind me and get on with living everyday....hard to do on treatment...
glad your back....God bless your day....jj
LOST1
01-06-2003, 03:13 PM
Jeannie,JJ-
Well howdy Girls, thought you left me to fend for myself here in cyber world,
JJ- 43 days huh, wow hope mine will go as fast for me as it did for you as it seemed for me -huh ? he he, am not surprized on the Non-dectect test again, you could accieve that just with you positivity, you keep us posted girl.
Jeannie- sorry to hear that your dad has to have pallitive care, hope everything there works out the best for everyone, will be thinking of you,
I have to spend the day on pre-tests at the U of A Hospital on fri, I will probebly not hold water after that, will look like a sprinkler he he.
Hope the holidays were the best they could be for you and yours hey girls do not hear enough from you, and where is that MJ?
Till then Be Well +
JJ, I am so excited for you!!!!! You must be absolutely estatic!!! I have been praying for you this whole time and God is so good isn't He?!!!
I guess today will make it 42 more days to go and what....6 shots!? or do you take more than one a week?
I pray to one day walk in your shoes. Keep me posted.
God Bless,
Jeannie
Wes1212
01-07-2003, 12:34 PM
Hi Jeanie! Where ya been? End of treatment? hmmmm... My doctor told me to plan to continue tx until at least 48 shots are done. We seem to be in agreement that if people are relapsing, there must still be active viri hiding somewhere and it needs to be greeted with interferon. If there is viremia that will not respond to interferon, it needs to be identified and studied. In the meantime, i am choosing to use the best thing we have available to fight it. I want to have a defense mechanism set up for when one of the little buggers makes its presence known in me. I would take interferon for the rest of my life if necessary to keep my viral load undectable or at least low. No one can convince me that viral load is not a factor in the risk of transmission.
I did shot #20 yesterday and have one of the worse headaches right now that I have experienced so far. The darvocet isn't cutting it. My neurologist seems to be the only doctor willing to help me with the pain and I am waiting for her to return my call. Her nurse said it may be awhile because she is busy with patients.
I've been lucky to not have experienced a remarkable amount of depression or any nausea. My mouth has the same taste in it I noticed when I was diagnosed with strep last month. There is a little burning under my tongue too. I have a regularly scheduled doctors appointment (PCP) on Thursday and have been told that they can not see me until then. Before I it becomes intolerable, I will head straight to the ER and tell them my doctor wouldn't see me and explain the low blood counts and my concern.
Other than all that, I feel pretty good http://www.healthboards.com/ubb/smile.gif Thanks for asking! I hope I didn't type your ears off...
How are you feeling right now? I hope things are going as smooth as they can for you all. I just said a quick prayer for you and your family.
Best wishes,
Wes
[This message has been edited by Wes1212 (edited 01-07-2003).]
LOST1
01-07-2003, 02:03 PM
Wes-
Glad to see the sides are at least tolerable for you, I agree with you on the point of treatment for the full 48 weeks, this virus is kind of like terrorists hiding in caves in the mountains, you can carpet bomb the mountains and do great damage to the terrorists and after ashort time may seem that you have eliminated them, but if you leave to soon, there will be some that crawled into the deepest crevices and begin to surface rebuilding their strengh, soon there will as many, as strong as they were when you started, moral? keep kicking the crap out of them until you are sure you have beat them into hell.
I am sure that the HCV virus is somwhat like that, a few make it deep into a protective miroscopic creavis, somwhere in our body and if treatment is stopped to soon, the virus will surface and muliply being as they were, or worse then when you started.
Hmmm where the heck did I dig that up.
Be Well +
Wes, you are a real trooper to stay on this stuff for a whole year. Makes sense what your doctor says but are you a little worried about the sides effects on your body? My insurance won't pay for longer than six months with my geno type so that kinda says it for me (to my relief).
Talking to ya'll again really makes me antzy to start treatment but I have to be patient. I can't afford to get sick right now, especially on weekends.
Anybody heard if the Pegasys sides are truely less than PegInton?
Take care ya'll,
Jeannie
LOST1
01-07-2003, 06:01 PM
Jeannie -
I know of several people that took the old interferon treatment and relapsed several years ago, they are now on the Pegasys program, several that did not know each other stated they were scared that they were given placebos as there were hardly any sides, but later, [weeks] noticed some flu-like symtoms and headaches etc, but still considerably less.
most of these symtoms are probebly related to the ribavirin, I know of know one that has taken on the pegasys mono yet, at least I beleive i don't, the sides would then be much less again.
Be Well +
Neil,
Thanks for your (always) delightful posts...Looking back on it , it does seem fast...but at my first month I wasn't feeling the same way...
If I needed to do this again, I would...The liver institute told me for my type (3a) I only needed to be on for 6 months...after that it is inafective....
My doctor (local) wants me on it for extra 3 months with the same reason...to get the roots...Loma Linda doesn/t agreee....So i will be getting off at 9 months term....
and retested in 6 months...who knows.....????
Jeannie, Your a sweety and I know when you say you have prayed for me...YOU HAVE...Keep them coming (as I will for you and pop) I do two shots a week --countdown,.42 days.. and beleive me, your shoes fit you just fine...remember it's not a one size fits all world....we all have our jouneys...Keep us posted... http://www.healthboards.com/ubb/smile.gif
Wes,,,
Those headaches are the worse.....I think that is probly my hardest part of the pain...I can take all the other stuff, like body aches, nausea, tiredness,but when your head hurts....YUK..
I also have problems with a taste of mercury or cemical in my mouth..( I know I don't like the sounds of that eather) and the more water I drink the more it sets the taste off.....I find myself drinking carbinated stuff more....but got to watch the burbs..(gas)
Keep on top of those doctors (well, next to)....don't become another patient number but become a friend...Your going to need to know him....
and Gods blessing upon this board....that we all have wisdom straight from the top....jj
sean
01-08-2003, 09:11 AM
I admire the courage and perserverance of you all. I am still waiting out the virus, yes. Will almost certainly get another biopsy before changing this idea. But, I must say I don't beleive I could do 48 weeks, period. So, my hats off to you.
Happy New Year--it will be, I promise.
sean
LOST1
01-08-2003, 01:09 PM
Howdy all-
As sean states 48 wks is a long time, makes you wonder though why 48 wks not 52 or 60, or less, why do they stop treatment if you do not respond now at 24 wks, to answer my own questions here, it is all based on statistics.
Each of us is, and will react a little different, some may have to go sixty weeks to totaly eliminate the HCV virus, while some do it in 24 or 48, but to make sure, I beleive that statistic's say for us geno-type 1A-1B that a 48 week combo is minimal time frame.
I know of many that did the full 48 wks, and still was not long enough to eliminate the HCV virus, while others have done up to 60 wks to make sure, and have been virus free for several years.
It is beleived that if you are not a responder at 24 wks that treatment for us 1A-Bs is obsolete, and if you even are a resonder at 24 weeks, treatment is a ceased at 48 wks in any case/in most cases.
Now the 24 wk and 48 wk protocol is based on statistic studies, but a lot of cases are showing virus free responces on a longer [60 wk] treatment, I think that if I am testing undetected at 24 wks I would want to go the full term of at least 48 wks, just to make sure we eliminated all the virus.
Then also I guess this would bring up another question, at what point does treatment start to have long term damaging results with side effects, again each of us will be different because of circumstances,age weight, make,[race] etc, here again statistics are a factor in the 48 wk protocol.
ok this is looking a lot like I am talking to myself, but some points to think about-
Be Well +
Don't forget that in the USA, to qualify for social security, your impairment must last at least 52 weeks. not fifty one weeks and six days.
Remember that no matter who you vote for, the government always gets in http://www.healthboards.com/ubb/smile.gif
LOST1
01-09-2003, 10:49 AM
Real-
Thanks for the kind and encouraging words, I am a genotype 1A-Stage 2 fibrosis, viral load is measured a little differntly here in Canada, but it bounces around like Sadams checks are, if he does'nt smarten up, but its usually under the million mark, Maybe the little critters do not like fresh air and lots of exercise, and I do not get them drunk either.
Be Well +
