Aa
What options does a non responder have?
My last blood work is as follows CBC ONLY done on 3/31
wbc=2.3
RBC=3.48
HEMOGOBIN=11.1
HEMATOCRIT=32.0
MCH32.0
RDW=16.9
EOSINOPHIL=0.2
Everything else was in normal range.
Have had about 3 bad weeks when I first started the different meds, new sides but sides most of you have talked about. The newest is muscle cramps in legs, which I have started eating more bananas. Roller coaster B/P, mine is usually 106/64 is my norm. and some other sides I won't go into. So I know it just comes with the territory of the medication.
Any way, what I want to know is this:
On the 3/10 I did the quant. viral load, and will have it back the end of the month. I would like to know with the knowledge you all have, What options are open to me if I am a non- responder? I am geno 1, givin 40% chance only by doctor in the beginning. I am on my 12th shot on thursday. On Rebetol 1200mg, and pegintron alpha 2 for the last 4 weeks. Was on pegasys and ribia first 7 weeks of TX. Would appreciate any feedback and would like your take on Staying on Medications and the down falls of that as well. If will cause more medical problems that are not going to go away that I will have to live with, Destroy other vital organs, that kinda thing. Thank You so much and Happy easter to everyone.
wbc=2.3
RBC=3.48
HEMOGOBIN=11.1
HEMATOCRIT=32.0
MCH32.0
RDW=16.9
EOSINOPHIL=0.2
Everything else was in normal range.
Have had about 3 bad weeks when I first started the different meds, new sides but sides most of you have talked about. The newest is muscle cramps in legs, which I have started eating more bananas. Roller coaster B/P, mine is usually 106/64 is my norm. and some other sides I won't go into. So I know it just comes with the territory of the medication.
Any way, what I want to know is this:
On the 3/10 I did the quant. viral load, and will have it back the end of the month. I would like to know with the knowledge you all have, What options are open to me if I am a non- responder? I am geno 1, givin 40% chance only by doctor in the beginning. I am on my 12th shot on thursday. On Rebetol 1200mg, and pegintron alpha 2 for the last 4 weeks. Was on pegasys and ribia first 7 weeks of TX. Would appreciate any feedback and would like your take on Staying on Medications and the down falls of that as well. If will cause more medical problems that are not going to go away that I will have to live with, Destroy other vital organs, that kinda thing. Thank You so much and Happy easter to everyone.
If IQ had anything to do with me being svr then I'd really be screwed. I don't even have to pay a copay to know that. So what are you up to on this fine day. It's 85 here today with nothing but blue skies. I went for a ride in my old car last night and let my hairs blow. Not all of them returned home with me. My granddad used to yell at me because my hair was down in my face so he would be super proud of me and the creeping forehead now.
Glad I had the state right when I asked for help for you. Can do Man sent you good sites. Hope they help. I'm doing fine will be going in again for another transfusion any day now, when I feel my HGB dropped lower.
Thanks for asking.
Beagle
Thanks for asking.
Beagle
Why do bunnies represent Easter? Have you ever seen a bunny lay an egg? If the bunny dies why is the woman pregnant? These are just some of the questions I ask myself right after taking the riba. Hope your feeling well and hang in there. Dale
I have this feelin your doc told you the same as mine. That IQ does not play a part in getting svr. Why he reminds me of that, i don't know. Oh well...:)
Looks like I will have that hook up at the hospital. Got the green light to go to the hospital when ever I feel my HGB drops further. Doc gave me and them the OK.
Beagle
Beagle
Hi Mister Beagle, sorry if I confused you, I kinda confuse myself most days LOL. I do live in paducah Ky, Its in the western part of ky. Hope your doing ok today
I live about 4 &1/2 hours from louisville, 3 from st. Louis and 2 & 1/2 from nashville. I didn't think if it was out of my state they would take me. Thanks for the links and the info of louisville ky. Thank you so much.
hey anybody know of any good hep docs in austin, tx that help really poor people? i am at one now, but having some doubts about them....
Hi there, i added froile and fisheress to your name. If they don't happen to see it and you see one of them post im sure they can help you. Best to you
Hi, if you happen to live close to louisville, ky check out this web site..........http://hepatitisdoctor.com/
If your close to lexington, ky go to
www.clinicaltrials.gov type in hcv,kentucky
Best to you.
If your close to lexington, ky go to
www.clinicaltrials.gov type in hcv,kentucky
Best to you.
Hey guy how you doing? A thought just popped in my head so i must be quick here. When you go for the transfusion see if they will just hook up an iv to you, strap a bag of blood to your hip and just let it keep driping till your done with tx. Kinda like going to the gas station only go to the hospital and just keep the bag full. Didn't say it was a good thought just a thought. Take care of yourself now.
You can vent all you want, we will listen. Is there a hep clinic near you? I don't know any thing about Ky, but there should be someone on the forum who does and can point you to a better dr. to treat, one who will inform his patients as to what is going on. I think you need more help then just the meds for free as you don't have medical ins. You need a place that will treat you for free or on a sliding scale like a clinic.
Can any one out there help?
Beagle
Can any one out there help?
Beagle
I was changed because the state took away my medical card. In the state of ky if your income is over 267.00 they have to right to take the card away. I get disablity through my past job @ 238.00 a week. So they decided I didn't need it.
Scherring company now gives me the medication I need. That was the reason for the change. My Doctor did not set any of this up,or give me information on it. I searched to find my own help online. I then got set up with assistance through the hospital here to help pay for my bloodwork, and I pay the doctor visits on my own. My Doctor and his office is not much help so I look for my own assistance. I also go to my MD who I do have some trust in, for other symptoms, and concerns I may have. I also keep a file of my gastro Doc who treats the Hep C, for every CBC, test that is run and Doctor notes, which most are incorrect. My last visit with him, he told me that mid april we would do the viral load and if I wasn't responding he would look at taking me off the medication. That is also why I was asking all of you for your opinion of what if.
At first with my Doc I was really hurt, didn't understand the lack of information, the distance and unwilling to see how damn white I was and how bad I looked when I would walk in. Why I was treated as if it was all not a big deal. Felt betrayed and wondered why. He is the one that didn't want to give me a biopsy and started my meds. NOW, I am just one 47 yr old that is pissed off at my doc and his neglectful, uninformative, uncompassionate staff. Now I am just on a mission. Sorry for the venting but I feel much better.
I really am not the kind to do the what ifs but I have fallen into that from time to time too. But I am someone that likes information, prepares for my logical choices, and likes to know what my choices are. I also have a 13 year old grand child that calls me mom. I am her rock. So to me looking to prepare for things in the future is part of that. Since at this point I don't know what shape my liver is really in because of no biopsy.
Thanks jmjm, Beagle, Dale Ray, nygirl, Bobby for your input. I know I don't write much here but I do listen to everyone and read alot. Thank you ever so much
Scherring company now gives me the medication I need. That was the reason for the change. My Doctor did not set any of this up,or give me information on it. I searched to find my own help online. I then got set up with assistance through the hospital here to help pay for my bloodwork, and I pay the doctor visits on my own. My Doctor and his office is not much help so I look for my own assistance. I also go to my MD who I do have some trust in, for other symptoms, and concerns I may have. I also keep a file of my gastro Doc who treats the Hep C, for every CBC, test that is run and Doctor notes, which most are incorrect. My last visit with him, he told me that mid april we would do the viral load and if I wasn't responding he would look at taking me off the medication. That is also why I was asking all of you for your opinion of what if.
At first with my Doc I was really hurt, didn't understand the lack of information, the distance and unwilling to see how damn white I was and how bad I looked when I would walk in. Why I was treated as if it was all not a big deal. Felt betrayed and wondered why. He is the one that didn't want to give me a biopsy and started my meds. NOW, I am just one 47 yr old that is pissed off at my doc and his neglectful, uninformative, uncompassionate staff. Now I am just on a mission. Sorry for the venting but I feel much better.
I really am not the kind to do the what ifs but I have fallen into that from time to time too. But I am someone that likes information, prepares for my logical choices, and likes to know what my choices are. I also have a 13 year old grand child that calls me mom. I am her rock. So to me looking to prepare for things in the future is part of that. Since at this point I don't know what shape my liver is really in because of no biopsy.
Thanks jmjm, Beagle, Dale Ray, nygirl, Bobby for your input. I know I don't write much here but I do listen to everyone and read alot. Thank you ever so much
did you have a biopsy done? if you are only a stage 1 or 2 and you are not svr you can wait untill the new drugs come out in 3-4 years hopefully. good luck.
it takes that long for your pcr to return???
mine was in my box in 4 days.
bobby
it takes that long for your pcr to return???
mine was in my box in 4 days.
bobby
What if the sun doesn't come up tomorrow? what if I clear but in two years its back? What if? Been there and still go there from time to time. It's a miserable place. I figure bacon will take me out anyway. Why the change in Meds mid stream? I take the Pegasys and on week 21 of 48. I cleared so the numbers folk have thrown around is that if you clear at 12 weeks then you have a 85% shot at staying clear. I think they put it at a 15% chance of relapse. I'd go to Vegas with those numbers. I'm a 1A also and this is my second treatment. I didn't respond to Interferon the first time. I bet you clear, I hope you clear. Dale ps don't worry I do enough of that for all of us Ha!
I to am wondering why you changed peg's mid treatment? I would wait and see before worrying about what might be.
beagle
beagle
The downsides of treatment are the side effects you describe and others. Some are temporary, some may be permanent. It appears one of our members may be losing her thyroid because of treatment. Others report new, ongoing symptons they never had before such as lupus-like skin and joint symptons. Kidney damage is also associated with treatment according to my NP.
The upside of treatment is giving yourself a chance to kill the virus. Among other things, killing the virus is associated with less fibrosis (liver damage) progression and even reversal. That means less chance of cirrhosis, liver cancer and possibly a transplant.
Your decision then should weigh the various risks of treatment against the rewards of killing the virus. The way I look at it, a lot depends on how much liver damage you already have and other things such as your age, general health, how you're tolerating treatment, lifestyle and other issues.
Say you have a lot of liver damage (stage 3 or 4) and you don't show a two-log drop at week 12. Some docs might say give up, your odds are too low for a cure. But others, will offer you a more agressive program, including extended treatment.
Say you only have stage 0 or stage 1 damage and again, you didn't get a two-log drop at week 12. Here, you might rightly decide -- given the lowered odds -- to stop treating and wait for another day, hopefully with better drugs.
This is oversimplifying of course because of all the other factors but hopefully gives you an idea -- at least of my thought process.
Curious, how come you changed peg's mid treatment?
-- Jim
The upside of treatment is giving yourself a chance to kill the virus. Among other things, killing the virus is associated with less fibrosis (liver damage) progression and even reversal. That means less chance of cirrhosis, liver cancer and possibly a transplant.
Your decision then should weigh the various risks of treatment against the rewards of killing the virus. The way I look at it, a lot depends on how much liver damage you already have and other things such as your age, general health, how you're tolerating treatment, lifestyle and other issues.
Say you have a lot of liver damage (stage 3 or 4) and you don't show a two-log drop at week 12. Some docs might say give up, your odds are too low for a cure. But others, will offer you a more agressive program, including extended treatment.
Say you only have stage 0 or stage 1 damage and again, you didn't get a two-log drop at week 12. Here, you might rightly decide -- given the lowered odds -- to stop treating and wait for another day, hopefully with better drugs.
This is oversimplifying of course because of all the other factors but hopefully gives you an idea -- at least of my thought process.
Curious, how come you changed peg's mid treatment?
-- Jim
Ah you are doing the exact same thing I did...the "what if" game.
First let me tell you - don't get too carried away in it. I had already spoken to my doctor about going on the Infergen/Riba trials and planned it all out. My doctor kept saying WAIT we are going to stay on the SAME course until week 24 and I won't even consider changing anything until you don't respond by then. Of course I did (although I had detectible at 4 and 12 weeks of 400s).
Anyway, I was going to try do to the Infergen if I had to - NOT a huge huge amount of it like Magnum, just regular 3x a week or something like that. It's a viable alternative for geno 1s who do relapse or don't respond.
Can I ask why you changed Interferons during treatment? That doesn't seem to make much sense to me. I don't know if that could affect you very much but since it's a different medication I'm really curious about this.
First let me tell you - don't get too carried away in it. I had already spoken to my doctor about going on the Infergen/Riba trials and planned it all out. My doctor kept saying WAIT we are going to stay on the SAME course until week 24 and I won't even consider changing anything until you don't respond by then. Of course I did (although I had detectible at 4 and 12 weeks of 400s).
Anyway, I was going to try do to the Infergen if I had to - NOT a huge huge amount of it like Magnum, just regular 3x a week or something like that. It's a viable alternative for geno 1s who do relapse or don't respond.
Can I ask why you changed Interferons during treatment? That doesn't seem to make much sense to me. I don't know if that could affect you very much but since it's a different medication I'm really curious about this.
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