Aa
Vertex updates?
I am unable to use interferon therapy since the last time I did I had a massive autoimmune response. I was told to never try IFN again.In fact, it's been years and my body is still screwed up from it. I wonder if I can get Vertex without a trial since I have no other options,an individual trial with a doctor?
i don't visit this on a regular basis, but read the comment about SCH 503034 and am wondering about whether anyone knows if it is the same as SCH 7. also, my understanding is that the pills/day for vx950 is much higher than schering's protease. trying to do my homework before the meeting this weekend.
Thank you for your information. I did call my dr.office and went back and got copies of all my files. I am looking at all of the numbers and researching questions that I don't know the annswer to. I had a setback when I visited my Dr today please read the post "Hep C Blood Tests for JMJM" on 11/03 and my current post on 11/04. I am very interested in everone opinion.
My personal email address is ***@**** please feel free to contact me there if this post is a problem.
Thanks Easy
My personal email address is ***@**** please feel free to contact me there if this post is a problem.
Thanks Easy
FYI. My doc emailed me yesterday to say that I do not qualify for the SCH503034 trial because on combo tx I got the 2log drop...they only accept true non-responders for now. Honestly, the thought of another year on INF was depressing me.
I'm with Can't Think of a Nickname on the VX950...it's targeted toward geno 1b's and their trials are lasting 1-3 months (hopefully because that's all the time needed to kill the virus).
In the meanwhile I'm drinking green tea and taking maximum Milk Thistle. Thanks again for all of your comments.
Mike
I'm with Can't Think of a Nickname on the VX950...it's targeted toward geno 1b's and their trials are lasting 1-3 months (hopefully because that's all the time needed to kill the virus).
In the meanwhile I'm drinking green tea and taking maximum Milk Thistle. Thanks again for all of your comments.
Mike
If there is one important thing that you should learn with this hep c tx(treatment), is to get copies of ALL your bloodwork and tests results. Keep your own chart and read the results yourself, anything in the "out of range" column that your dr did not address, research and bring it up yourself. get copies ASAP. You should have the results of your biopsy, it serves as the foundation for starting or continuing tx. With hep c, YOU have to be more informed than your physician, do not rely on his/her expertise only.
Exactly ditto what Cuteus said.
You care about yourself more than your doctor does...and are much more likely to really really evaluate your numbers than they are. Knowledge is power over this disease and having all of your paperwork provides knowledge of your situation!
Best of luck!
You care about yourself more than your doctor does...and are much more likely to really really evaluate your numbers than they are. Knowledge is power over this disease and having all of your paperwork provides knowledge of your situation!
Best of luck!
it sounds like a good idea to talk to your dr about nuepogen and procrit before lowering the meds as a first option...cancer patients have to go on these meds sometimes to make it through chemo...
you know avoiding lowering meds is always best for the best results of clearance, if at all possible.
see if that dr has some other ideas for you first...of course you must obey your drs orders, but you could try getting a second opinion from another hepatologist, perhaps from a big hospital or teaching hospital...they are more up on things.
i pray you can find a way to stay on full dose...or clear anyway...
sandi
you know avoiding lowering meds is always best for the best results of clearance, if at all possible.
see if that dr has some other ideas for you first...of course you must obey your drs orders, but you could try getting a second opinion from another hepatologist, perhaps from a big hospital or teaching hospital...they are more up on things.
i pray you can find a way to stay on full dose...or clear anyway...
sandi
Jim
Thank you for the info. My dr. wants me to stop ribavairn immediatly but I think I will wait and try and go see him tomorrow to have that heart to heart. You asked what results I was looking for (week 12 PCR) I dont know what PCR means. But I am trying to find out what my Viral load is. Is that what you mean by PCR? You asked if I was taking a a very sensitive PCR. I do not think I am. I am a 50 year old male and newly diagnosed with Type 2 Diabeties. I weighed 215 lbs in June and I now weigh 198 lbs. I quit smoking in Feb 2005. I have felt okay since I started the hep c treatment in aug 2005. Except sunday afternoons I get the chills and body aches (I take my shot on Saturday night) But other than that I feel fine. I realize that I have been anemic because when I blow my nose or sneeze I have a little blood on the tissue. Also when I check my sugar levels I ***** the end of my finger and it doesnt want to stop bleeding right away. But it does stop pretty quickly after I apply pressure to it. I also just had a cortizone shot 2 weeks ago in my knee. Would that contribute to anything?
I used to take zoloft but I discontinued the use because I wasnt depressed. I currently take ribasphere 3 tablets 2 x per day 200 mg each, I also take metformin 1000 mg 2 x per day for my diabeties as well as the redipen peginferon. I also tak about three ibuprophin each day.
I did have a liver biopsy and I dont know what stage I am in but again my viral count was 519,000 and I am a geno type 1A.
I really appreciate all your help and the time it took to write all that you wrote. I now have questions that I can ask my doctor about tomorrow. I will keep you informed. What is a PCR, and also is it possible that I will be showing no virule load after 12 weeks... is that what undectable means? If so why do I need this treatment for 48 weeks? Thanks again Jim Mike
Thank you for the info. My dr. wants me to stop ribavairn immediatly but I think I will wait and try and go see him tomorrow to have that heart to heart. You asked what results I was looking for (week 12 PCR) I dont know what PCR means. But I am trying to find out what my Viral load is. Is that what you mean by PCR? You asked if I was taking a a very sensitive PCR. I do not think I am. I am a 50 year old male and newly diagnosed with Type 2 Diabeties. I weighed 215 lbs in June and I now weigh 198 lbs. I quit smoking in Feb 2005. I have felt okay since I started the hep c treatment in aug 2005. Except sunday afternoons I get the chills and body aches (I take my shot on Saturday night) But other than that I feel fine. I realize that I have been anemic because when I blow my nose or sneeze I have a little blood on the tissue. Also when I check my sugar levels I ***** the end of my finger and it doesnt want to stop bleeding right away. But it does stop pretty quickly after I apply pressure to it. I also just had a cortizone shot 2 weeks ago in my knee. Would that contribute to anything?
I used to take zoloft but I discontinued the use because I wasnt depressed. I currently take ribasphere 3 tablets 2 x per day 200 mg each, I also take metformin 1000 mg 2 x per day for my diabeties as well as the redipen peginferon. I also tak about three ibuprophin each day.
I did have a liver biopsy and I dont know what stage I am in but again my viral count was 519,000 and I am a geno type 1A.
I really appreciate all your help and the time it took to write all that you wrote. I now have questions that I can ask my doctor about tomorrow. I will keep you informed. What is a PCR, and also is it possible that I will be showing no virule load after 12 weeks... is that what undectable means? If so why do I need this treatment for 48 weeks? Thanks again Jim Mike
Sorry you're having these issues.
From what I've read, yes, your platelets are moving into the low zone but the two numbers that are the most meaningful would be your hemoglobin and ANC (absolute neutrophils). Do you have those numbers? If not, ask your doctor what they are.
In general, many hepatologists allow ANC to fall as low as 200-300 before reducing intervening with Neopgen and/or temporarily reducing the Peg. Neupogen works pretty fast. Keep in mind some doctors will intervene at ANC 750 although in my opinion and experience it's unwarranted. My ANC dropped as low as 420 but then bounced back to 1000 by themselves without Neupogen. Had I taken Neupogen at ANC 420, I believe I'd have an unnecessary drug in my system.
Hemoglobin values and when to intervene with Procrit are a very individual matter. Factors to consider are the absolute number, how fast and far it's dropped, age, sex, how you're feeling (i.e. adjusting to the lower Hgb) and other things such as any heart or arrythemia issues. That said, if I had to pick a number where a lot of doctors intervene with Procrit it would be Hemoglobin 10. But if at all possible, you want to intervene with Procrit as opposed to reducing riba. Procrit takes 2-4 weeks to kick in.
I'm assuming the results you are waiting for are your week 12 PCR? If you're taking a very sensitive PCR like Heptimax, the reason you have to wait so long is that the TMA portion of the test is often sent to California. But in actuality, the PCR portion (sensitive to <50 IU/ML) is usuall completed in 3-4 days. So, in this case, the longer you wait the better, but if you want a heads-up, have the doctor call the lab to see if the PCR portion was completed. Chances are if the PCR is <50, you will end up non-detectible.
Lastly, I'd have a real sit-down, heart-to-heart with your doctor and go over all your options and discuss Procrit and Neopgen intervention as opposed to dose reduction. There may be other health factors that neither of us aware of. If, after that, you still don't feel they are being agressive enough with your treatment, then a second opinion would be in order. In fact, since things take time, if it were me, I'd be lining up a second opinion from a hepatologist now. You can always cancel. BTW did you have a biopsy and what stage are you?
-- Jim
From what I've read, yes, your platelets are moving into the low zone but the two numbers that are the most meaningful would be your hemoglobin and ANC (absolute neutrophils). Do you have those numbers? If not, ask your doctor what they are.
In general, many hepatologists allow ANC to fall as low as 200-300 before reducing intervening with Neopgen and/or temporarily reducing the Peg. Neupogen works pretty fast. Keep in mind some doctors will intervene at ANC 750 although in my opinion and experience it's unwarranted. My ANC dropped as low as 420 but then bounced back to 1000 by themselves without Neupogen. Had I taken Neupogen at ANC 420, I believe I'd have an unnecessary drug in my system.
Hemoglobin values and when to intervene with Procrit are a very individual matter. Factors to consider are the absolute number, how fast and far it's dropped, age, sex, how you're feeling (i.e. adjusting to the lower Hgb) and other things such as any heart or arrythemia issues. That said, if I had to pick a number where a lot of doctors intervene with Procrit it would be Hemoglobin 10. But if at all possible, you want to intervene with Procrit as opposed to reducing riba. Procrit takes 2-4 weeks to kick in.
I'm assuming the results you are waiting for are your week 12 PCR? If you're taking a very sensitive PCR like Heptimax, the reason you have to wait so long is that the TMA portion of the test is often sent to California. But in actuality, the PCR portion (sensitive to <50 IU/ML) is usuall completed in 3-4 days. So, in this case, the longer you wait the better, but if you want a heads-up, have the doctor call the lab to see if the PCR portion was completed. Chances are if the PCR is <50, you will end up non-detectible.
Lastly, I'd have a real sit-down, heart-to-heart with your doctor and go over all your options and discuss Procrit and Neopgen intervention as opposed to dose reduction. There may be other health factors that neither of us aware of. If, after that, you still don't feel they are being agressive enough with your treatment, then a second opinion would be in order. In fact, since things take time, if it were me, I'd be lining up a second opinion from a hepatologist now. You can always cancel. BTW did you have a biopsy and what stage are you?
-- Jim
In re-reading my prev post to you, I didn't mean to infer that your low platelet number is not meaningful. I personally don't know too much about platelet issues but have heard some doctors intervene with a drug called Neumega although it has side effects.
What I meant was that Hemoglobin (Hgb) and ANC were more meaningful then let's say WBC and Red Count, at least to me.
-- Jim
What I meant was that Hemoglobin (Hgb) and ANC were more meaningful then let's say WBC and Red Count, at least to me.
-- Jim
I am sorry to hear about your problems with interferon. The quickest path to registration is with interferon and 950, but they are definitely exploring it as a monotherapy as well. From what I understand, a 3 month Phase II monotherapy study is scheduled to start very early next year. They are completing the 3 month toxicological animal studies, that's why it is starting after the combo trial. I have high hopes for it, we'll see what the data says. Even though VRTX has not announced where trial centers will be, it is my understanding that the centers themselves may already know. I am not sure if that is just for the upcoming combo trial which will start shortly, or if it is for the mono as well.
PCR is a type of test for viral load. So in effect the words "PCR" and "viral load test" are used interchangably. Yes, it's possible that the test you took will show no virus after 12 weeks, but it's still important to continue for the full 48-week course. Just because the test says you're non-detectible doesn't mean some virus won't remain that the test doesn't pick up. So you need the full course to kill off any virus remnants to make sure it's gone for good.
Unless you understand all your numbers and exactly what you're doing, I wouldn't continue to take the ribavirin until either your doctor tells you it's OK, or until another doctor who examines you does the same. The nose bleed situation also should be looked into right away. That said, some of us have taken more riba than our doctors advised, but there can be consequences. In my case I ended up in the emergency room. These are powerful drugs and must be supervised by your doctor or NP. So make a best effort to get things resolved with them tomorrow. All the best and hoping things work out for you.
-- Jim
Unless you understand all your numbers and exactly what you're doing, I wouldn't continue to take the ribavirin until either your doctor tells you it's OK, or until another doctor who examines you does the same. The nose bleed situation also should be looked into right away. That said, some of us have taken more riba than our doctors advised, but there can be consequences. In my case I ended up in the emergency room. These are powerful drugs and must be supervised by your doctor or NP. So make a best effort to get things resolved with them tomorrow. All the best and hoping things work out for you.
-- Jim
Here are the press releases for Aethlon
http://www.corporate-ir.net/ireye/ir_site.zhtml?ticker=AEMD&script=400&layout=8
http://www.corporate-ir.net/ireye/ir_site.zhtml?ticker=AEMD&script=400&layout=8
I would not go against what my Dr says based on someones opinion on this forum! Platelet level of 25 is what my Dr told me was his threshold to pull the plug! My platlets at my 4 week test were 35 so they are wathching mine closely. I was told by Dr that the Peg is what effects the platlets.
Dr's office before I started treatment made me sign a contract that I would take my tx and all follow ups and blood work as directed. I asked why they do this (never heard of something like this) NP told me that they had lost a patient because he did not follow instructions, they worry about liability, thats all I could get out of her. Anyone else out there have to sign a contract?
Dr's office before I started treatment made me sign a contract that I would take my tx and all follow ups and blood work as directed. I asked why they do this (never heard of something like this) NP told me that they had lost a patient because he did not follow instructions, they worry about liability, thats all I could get out of her. Anyone else out there have to sign a contract?
I am sorry you cannot handle the interferon but I don't think it is an all possible to get a protease inhibitor without being in a study.
Drop down to the 11/1 thread on the schering SCH 503034 and also check out the 10/27 thread on VX950
Look for posts from "Can't think of a nickname" who is keeping us all very informed on the progress of VX950.
friole
Drop down to the 11/1 thread on the schering SCH 503034 and also check out the 10/27 thread on VX950
Look for posts from "Can't think of a nickname" who is keeping us all very informed on the progress of VX950.
friole
No. But I think I'm falling in love. :) Just kidding.
Listen, how are you doing these days? Any new blood tests or developments?
Good to hear from you.
-- Jim
Listen, how are you doing these days? Any new blood tests or developments?
Good to hear from you.
-- Jim
http://www.roberttbetz.com/jaundice.JPG
http://www.roberttbetz.com/jaundice1.JPG
robert
http://www.roberttbetz.com/jaundice1.JPG
robert
http://www.corporate-ir.net/ireye/confLobby.zhtml?ticker=VRTX&item_id=1148557
Vertex presents On 3 Nov 2005 @ 11:40 EST
Vertex presents On 3 Nov 2005 @ 11:40 EST
Thanks for your response to my questions this morning. Guess I misunderstood your comment and was looking for the info on vertex site. Duh! I'll check out the abstracts you cited. Thanks. DJ
I don't know anything about the purifier, but I do know that ozone therapy has some issues with it, with respect to damage it can do to living cells. My PCP told me before (I think) about studies using UV light, but it didn't pan out.
And, I do own VRTX, since last year. All of my research in this area is dedicated to the cure, and in the course of that research, I bought that stock. I have been following drug development for HCV for 4 years or more, including that compound. I remember talking to Boeheringer Ingleheim years ago, but since they aren't a publicly traded company, they had no need to tell me anything-and that's just about what I got. That was so long ago, it is almost hard to remember when I was following that compound.
And, I do own VRTX, since last year. All of my research in this area is dedicated to the cure, and in the course of that research, I bought that stock. I have been following drug development for HCV for 4 years or more, including that compound. I remember talking to Boeheringer Ingleheim years ago, but since they aren't a publicly traded company, they had no need to tell me anything-and that's just about what I got. That was so long ago, it is almost hard to remember when I was following that compound.
our own bodies might eliminate 50% of hcv from our blood and hcv might bounce right back in the millions in no time. the procedure you mentioned might just be another money making scheme.
Thanks for all the info on Vertex.Please keep us posted. Maybe it would be worth it to buy some stock. Are you hearing anything about Aethlon's hemopurifier?They claim to eliminate 58% of HCV virus in a two hour procedure. That would be another alternative for people who cannot tolerate IFN.
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