Loading ...
Sorry, an error occurred while loading the content.

Re: [GIWorld-Hepatitis] Re: Peg

Expand Messages
  • glenna gebauer
    ... I live in Indianapolis, facilitate a hep c support group here. The only doc I know of doing studies and compiling data on Peg/ribavirin is Dr. Bruce Bacon.
    Message 1 of 28 , May 31, 2000
    • 0 Attachment
      >Hi marjorie..
      I live in Indianapolis, facilitate a hep c support group here. The only doc
      I know of doing studies and compiling data on Peg/ribavirin is Dr. Bruce
      Bacon. he is in st. Louis, MO.

      Hope that helps. You could also call your Schering representative there and
      see if they can give you statistics.

      Glenna G.
      ________________________________________________________________________
      Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
    • alley/Patricia
      Yeah I d like to hear more about the PEG too. Here at UT Southwestern, they are doing trials with PEG only for 3 year maintenance for nonresponders, after
      Message 2 of 28 , May 31, 2000
      • 0 Attachment
        Yeah I'd like to hear more about the PEG too. Here at UT Southwestern, they
        are doing trials with PEG only for 3 year maintenance for nonresponders,
        after that, it'll be with riba.
        alley/Patricia
        ICQ 12631861
        alleypat@...
        http://www.flash.net/~alleypat
      • Claudine Crews
        Dear Marjorie, I have a question about the study that your doctor wants to put you on. You say that it is six months of Peg/combo and if non-response then
        Message 3 of 28 , May 31, 2000
        • 0 Attachment
          Dear Marjorie,
          I have a question about the study that your doctor wants to put you on.
          You say that it is six months of Peg/combo and if non-response then three
          and a half years of maintenance dose? What happens if you DO respond? How
          long will you stay on it then? As a previous non-responder don't you need
          to stay on for a longer time than 6 months? I'm a non-responder too, and my
          doctor is also talking about doing a peg when it comes out. I know that if
          I do respond I want to stay on for at least a year, maybe even longer. I
          liked the idea of the maintenance dose for so long a period. I would like to
          do something like that even if I do respond. Maybe not 3 1/2 years!! Also,
          which peg is being used in this study, the Schering or Roche?
          I did find the info on how long the virus can live outside the body
          interesting. I had asked Dr. Misra this a while back and he said up to 12
          hours, depending on the room temperature. This is a current debate going on
          on another HepC list, and everyone has a different 'expert' opinion! Many
          are insisting it can live for days, weeks, even months. When I sent in what
          Dr. Misra said I got a testy reply back that the virus could live for 3
          months, that was why it was so contagious!!!! I find that down-right
          silly. Everyone in our households would probably be infected, since most of
          us have had this sometimes for years without knowing it, and weren't too
          careful prior to finding out we have HCV. Common sense says it can't live
          very long outside the body, even IN the body the virus has a very short life
          span.
          Good luck with your decision.
          Claudine

          ________________________________________________________________________
          Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
        • Marjorie Delese
          Dr at U T Southwestern told me yesterday that trials using Peg/ribivirin are going on right now. Trials using Peg/ribivirin are starting this fall ; six
          Message 4 of 28 , May 31, 2000
          • 0 Attachment
            Dr at U T Southwestern told me yesterday that trials using
            Peg/ribivirin are going on right now. Trials using Peg/ribivirin are
            starting this fall ; six months on trmt; non resp. will be three and a
            half yrs on small doses of INF. He also said they have numberous
            trial going on for Hep C. MD
            ----- Original Message -----
            From: alley/Patricia <alleypat@...>
            To: <GIWorld-Hepatitis@egroups.com>
            Sent: Wednesday, May 31, 2000 8:04 PM
            Subject: Re: [GIWorld-Hepatitis] Re: Peg


            > Yeah I'd like to hear more about the PEG too. Here at UT
            Southwestern, they
            > are doing trials with PEG only for 3 year maintenance for
            nonresponders,
            > after that, it'll be with riba.
            > alley/Patricia
            > ICQ 12631861
            > alleypat@...
            > http://www.flash.net/~alleypat
            >
            >
            > --------------------------------------------------------------------
            ----
            > Did you get the best price for these CDs and movies?
            > ****************************************************
            > http://click.egroups.com/1/4738/0/_/619765/_/959822720/
            > --------------------------------------------------------------------
            ----
            >
            > Community email addresses:
            > Post message: GIWorld-Hepatitis@onelist.com
            > Subscribe: GIWorld-Hepatitis-subscribe@onelist.com
            > Unsubscribe: GIWorld-Hepatitis-unsubscribe@onelist.com
            > List owner: GIWorld-Hepatitis-owner@onelist.com
            >
            > Shortcut URL to this page:
            > http://www.onelist.com/community/GIWorld-Hepatitis
            >
            >
          • alley/Patricia
            Marjorie thanks for the update.... My info came from Dr Lee but it was a few months ago right after Christmas... Unfortunately, i have normal liver enzymes
            Message 5 of 28 , May 31, 2000
            • 0 Attachment
              Marjorie thanks for the update.... My info came from Dr Lee but it was a few
              months ago right after Christmas... Unfortunately, i have normal liver
              enzymes and never done treatment so I didn't qualify for any of their trials
              :( oh well
              alley/Patricia
              ICQ 12631861
              alleypat@...
              http://www.flash.net/~alleypat
            • Marjorie Delese
              Claudine, the study on the Peg/ribivirin is six months on the combo, if you respond that[ s it, if you do not then 3 and 1/2 yrs of low dose INf along with
              Message 6 of 28 , May 31, 2000
              • 0 Attachment
                Claudine, the study on the Peg/ribivirin is six months on the combo,
                if you respond that['s it, if you do not then 3 and 1/2 yrs of low
                dose INf along with this they are testing Peg along with another drug
                (don't remember the name starts with A----dine) right now they are
                starting one with just Peg but you have to e off trmts 6 months
                before starting another study. I'm not sure what I'll do, just
                finished my second round of trmts the first was in 98. Take care,
                Marjorie
                ----- Original Message -----
                From: Claudine Crews <claudinecrews@...>
                To: <GIWorld-Hepatitis@egroups.com>
                Sent: Wednesday, May 31, 2000 8:05 PM
                Subject: Re: [GIWorld-Hepatitis] Re: Peg


                > Dear Marjorie,
                > I have a question about the study that your doctor wants to put
                you on.
                > You say that it is six months of Peg/combo and if non-response
                then three
                > and a half years of maintenance dose? What happens if you DO
                respond? How
                > long will you stay on it then? As a previous non-responder don't
                you need
                > to stay on for a longer time than 6 months? I'm a non-responder
                too, and my
                > doctor is also talking about doing a peg when it comes out. I know
                that if
                > I do respond I want to stay on for at least a year, maybe even
                longer. I
                > liked the idea of the maintenance dose for so long a period. I would
                like to
                > do something like that even if I do respond. Maybe not 3 1/2
                years!! Also,
                > which peg is being used in this study, the Schering or Roche?
                > I did find the info on how long the virus can live outside the
                body
                > interesting. I had asked Dr. Misra this a while back and he said up
                to 12
                > hours, depending on the room temperature. This is a current debate
                going on
                > on another HepC list, and everyone has a different 'expert' opinion!
                Many
                > are insisting it can live for days, weeks, even months. When I sent
                in what
                > Dr. Misra said I got a testy reply back that the virus could live
                for 3
                > months, that was why it was so contagious!!!! I find that
                down-right
                > silly. Everyone in our households would probably be infected, since
                most of
                > us have had this sometimes for years without knowing it, and weren't
                too
                > careful prior to finding out we have HCV. Common sense says it
                can't live
                > very long outside the body, even IN the body the virus has a very
                short life
                > span.
                > Good luck with your decision.
                > Claudine
                >
                >
                ______________________________________________________________________
                __
                > Get Your Private, Free E-mail from MSN Hotmail at
                http://www.hotmail.com
                >
                >
                > --------------------------------------------------------------------
                ----
                > Did you get the best price for these CDs and movies?
                > ****************************************************
                > http://click.egroups.com/1/4738/0/_/619765/_/959821547/
                > --------------------------------------------------------------------
                ----
                >
                > Community email addresses:
                > Post message: GIWorld-Hepatitis@onelist.com
                > Subscribe: GIWorld-Hepatitis-subscribe@onelist.com
                > Unsubscribe: GIWorld-Hepatitis-unsubscribe@onelist.com
                > List owner: GIWorld-Hepatitis-owner@onelist.com
                >
                > Shortcut URL to this page:
                > http://www.onelist.com/community/GIWorld-Hepatitis
                >
                >
              • Marjorie Delese
                Pat, my info was from Dr. Malet (associate of Dr. Lee) have a girlfriend just finishing a study with Dr. Lee. This is her last week of nine months, she was in
                Message 7 of 28 , May 31, 2000
                • 0 Attachment
                  Pat, my info was from Dr. Malet (associate of Dr. Lee) have a
                  girlfriend just finishing a study with Dr. Lee. This is her last week
                  of nine months, she was in the High dose study, I don't know how she
                  has made it through. Lost all her hair, bruises any time she bumbs
                  herself slightly and says the pain just goes all through her bones.
                  Take care, Marjorie
                  ----- Original Message -----
                  From: alley/Patricia <alleypat@...>
                  To: <GIWorld-Hepatitis@egroups.com>
                  Sent: Wednesday, May 31, 2000 9:56 PM
                  Subject: Re: [GIWorld-Hepatitis] Re: Peg


                  > Marjorie thanks for the update.... My info came from Dr Lee but it
                  was a few
                  > months ago right after Christmas... Unfortunately, i have normal
                  liver
                  > enzymes and never done treatment so I didn't qualify for any of
                  their trials
                  > :( oh well
                  > alley/Patricia
                  > ICQ 12631861
                  > alleypat@...
                  > http://www.flash.net/~alleypat
                  >
                  >
                  > --------------------------------------------------------------------
                  ----
                  > 22,345,678 matches to your search term?
                  > Inforocket.com is the fast way to the right answer - guaranteed.
                  > http://click.egroups.com/1/4521/0/_/619765/_/959828737/
                  > --------------------------------------------------------------------
                  ----
                  >
                  > Community email addresses:
                  > Post message: GIWorld-Hepatitis@onelist.com
                  > Subscribe: GIWorld-Hepatitis-subscribe@onelist.com
                  > Unsubscribe: GIWorld-Hepatitis-unsubscribe@onelist.com
                  > List owner: GIWorld-Hepatitis-owner@onelist.com
                  >
                  > Shortcut URL to this page:
                  > http://www.onelist.com/community/GIWorld-Hepatitis
                  >
                  >
                • Constance Dickson
                  Could someone let me know about the trials and possibly their locations? I would appreciate it very much. Thank You, Connie ...
                  Message 8 of 28 , May 31, 2000
                  • 0 Attachment
                    Could someone let me know about the trials and
                    possibly their locations? I would appreciate it very
                    much. Thank You, Connie
                    --- alley/Patricia <alleypat@...> wrote:
                    > Yeah I'd like to hear more about the PEG too. Here
                    > at UT Southwestern, they
                    > are doing trials with PEG only for 3 year
                    > maintenance for nonresponders,
                    > after that, it'll be with riba.
                    > alley/Patricia
                    > ICQ 12631861
                    > alleypat@...
                    > http://www.flash.net/~alleypat
                    >
                    >


                    __________________________________________________
                    Do You Yahoo!?
                    Send instant messages & get email alerts with Yahoo! Messenger.
                    http://im.yahoo.com/
                  • Claudine Crews
                    Dear Marjorie, I think for a non-responder to only stay on any treatment for 6 months is asking for a relapse. After all, you ve already shown you don t
                    Message 9 of 28 , May 31, 2000
                    • 0 Attachment
                      Dear Marjorie,
                      I think for a non-responder to only stay on any treatment for 6 months
                      is asking for a relapse. After all, you've already shown you don't respond
                      to interferon well. I liked the sound of the study until you got to this
                      part! The other medication, could it be amantadine? I'd like to see a
                      study on Peg, ribavirin, and amantadine, all together.
                      I just read a letter today about all the genotype 2's and 3's that are
                      suddenly relapsing, when everyone assumed they were going to be sustained
                      responders, just because of their genotype. Supposedly the Mayo Clinic is
                      going to start treating them for a full year too. Maybe 6 months is not
                      long enough for anyone, and I just can't believe it would be long enough for
                      a previous non-responder. This is the down side to studies, there is no
                      flexibility, no room for individual treatment options. Good luck on making
                      a decision, I know it will be a tough one for you. Are you in a position
                      where you can wait a while?
                      Claudine


                      >From: "Marjorie Delese" <mrdelese@...>
                      >
                      >Claudine, the study on the Peg/ribivirin is six months on the combo,
                      >if you respond that['s it, if you do not then 3 and 1/2 yrs of low
                      >dose INf along with this they are testing Peg along with another drug
                      >(don't remember the name starts with A----dine) right now they are
                      >starting one with just Peg but you have to e off trmts 6 months
                      >before starting another study.>

                      ________________________________________________________________________
                      Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                    • LEST2001@aol.com
                      Hello all: Can anyone explain why the Peg. treatment is going to work better then the regular high dose daily combo treatment? Les
                      Message 10 of 28 , Jun 1, 2000
                      • 0 Attachment
                        Hello all:
                        Can anyone explain why the Peg. treatment is going to work better then
                        the regular high dose daily combo treatment?
                        Les
                      • Claudine Crews
                        Dear Les, The Peg will NOT work better than high dose daily interferon. In fact, I would rather do high dose daily combo treatment. The problem is that the
                        Message 11 of 28 , Jun 1, 2000
                        • 0 Attachment
                          Dear Les,
                          The Peg will NOT work better than high dose daily interferon. In fact,
                          I would rather do high dose daily combo treatment. The problem is that the
                          current interferon is only FDA approved for 3 times weekly dosing, and many
                          doctors are not willing to prescribe 'off label', which daily dosing is.
                          With all the stupid law suits that get filed against them you can hardly
                          blame them. The pegylated interferons are the drug companies answer to the
                          fact that keeping a constant, sustained pressure on the virus works much
                          better than giving the virus a break between injections on the 3 times a
                          week dosing. I think they would rather come out with a NEW IMPROVED
                          interferon rather than admit that they made a mistake in the original 3
                          times a week dosing. The only reason interferon for HCV was studied at 3
                          times a week dosing is because that was already how it was used when
                          treating cancer. What works for cancer just doesn't work well at all for
                          HCV, especially in genotypes 1 and 4, and 1 is the most common genotype in
                          the US!
                          At only one injection a week the Schering version of peg interferon
                          will probably not work nearly as well as daily dosing of regular interferon
                          would. The half-life of their version is just not long enough, and will not
                          last a week in your body. The Roche brand has a longer half-life, which is
                          better, and will last almost a full week, but not quite!
                          The other up-side to the pegylateds is that it is only one injection a
                          week, and the side effects are also supposed to be easier to handle than 3
                          times a week dosing, since there is a constant level in your blood, and not
                          the up's and down's of 3X weekly dosing. Of course, daily dosing addresses
                          this issue also.
                          To sum this up, the pegylateds will work much better than standard, 3
                          times a week dosing, but not as well as daily dosing of regular interferon.
                          At least, this is my much researched belief.
                          Claudine

                          >From: LEST2001@...
                          > Can anyone explain why the Peg. treatment is going to work better then
                          >the regular high dose daily combo treatment?
                          >Les

                          ________________________________________________________________________
                          Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                        • alley/Patricia
                          I m trying to convince my husband that I can do every other day dosing with the interferon. Heck I could probably handle daily dosing cause I m having no sides
                          Message 12 of 28 , Jun 1, 2000
                          • 0 Attachment
                            I'm trying to convince my husband that I can do every other day dosing with
                            the interferon. Heck I could probably handle daily dosing cause I'm having
                            no sides and feel better than I have in years.

                            However, he thinks I should have doctor approval. I told him the doctor
                            won't approve it cause it's not approved by FDA etc but everything I've read
                            tells me that if I can attack the virus nonstop as much as possible the
                            first 6 months, I've got a better chance, having 1b, at remission. My
                            husband is a stubborn man :) I know he is concerned and rightly so.

                            I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume I
                            stay the same there (I'll just run out faster, but I can reorder a little
                            early and so what if I run out at week 40 something instead of 48 if I've
                            got it kicked by 6 months)?

                            For those who do daily, is it less interferon? 1.5?

                            I'm really doing well with the sides and I want to get as aggressive as I
                            can with it, and watch my blood work closely. But I don't want to do the
                            wrong thing.

                            What do yall think?

                            alley/Patricia
                            ICQ 12631861
                            alleypat@...
                            http://www.flash.net/~alleypat
                          • gorski
                            ... Claudine: There is a study in progress with the above three. The one study I know of has four arms as follows: Randomized PEG study (ROCHE) with four arms
                            Message 13 of 28 , Jun 1, 2000
                            • 0 Attachment
                              > I'd like to see a
                              >study on Peg, ribavirin, and amantadine, all together.

                              Claudine:

                              There is a study in progress with the above three. The one study I know of
                              has four arms as follows:

                              Randomized PEG study (ROCHE) with four arms
                              for relapsers:

                              1) PEG plus Ribavirin
                              2) PEG plus Amantidine
                              3) PEG plus Ribaviron & Amantidine
                              4) PEG plus Cellcept

                              Brian
                            • Jane2370@aol.com
                              In a message dated 6/1/00 11:07:51 PM Eastern Daylight Time, alleypat@flash.net writes:
                              Message 14 of 28 , Jun 1, 2000
                              • 0 Attachment
                                In a message dated 6/1/00 11:07:51 PM Eastern Daylight Time,
                                alleypat@... writes:

                                << For those who do daily, is it less interferon? 1.5?

                                Patricia - I do daily shots of 3 million. I never heard of anyone doing
                                less.
                                Like you, I am having an easy time of it (fingers crossed!). In fact,
                                speaking of my fingers, my nails are longer and stronger than ever. Weird,
                                huh?
                                BTW - I am in my 3rd month, started March 23rd. I'm a 2b and I will beg my
                                doctor (if need be) to stay on 11 months. I'm really starting to feel that 6
                                months is too short. That seems to be the consensus of this list and I'm
                                ready to go the whole distance.
                                I hope you can persuade your dr. to let you do daily shots. It's no big
                                whoop.

                                Peace,
                                Jane
                              • HepatitisCinAZ@aol.com
                                alleypat@flash.net writes:
                                Message 15 of 28 , Jun 1, 2000
                                • 0 Attachment
                                  alleypat@... writes:

                                  << Now if I go every other day, I assume I
                                  stay the same there (I'll just run out faster, but I can reorder a little
                                  early and so what if I run out at week 40 something instead of 48 if I've
                                  got it kicked by 6 months)? >>

                                  Well, many insurance companies will not refill early, and Schering will not
                                  give authorization to early filling either, if you are on the commitment to
                                  care program. Who is your carrier?



                                  Sharon Nicholson

                                  Hepatitis Education & Patient Coalition (H. E. P. C.)
                                  Executive Director

                                  <A HREF="http://www.suite101.com/welcome.cfm/hepatitis_abc">Hepatitis A, B,
                                  C's - editor Suite101.com</A>
                                  http://www.suite101.com/welcome.cfm/hepatitis_abc

                                  Join our e-group mailing list online!
                                  <A HREF="http://www.onelist.com/group/ArizonaHepatitisC">eGroups :
                                  ArizonaHepatitisC</A>
                                  http://www.onelist.com/group/ArizonaHepatitisC
                                • Claudine Crews
                                  Dear Brian, Thanks for the info. Is this the study where you are randomly assigned to receive one of the 4 combinations, but have no say-so on which you get?
                                  Message 16 of 28 , Jun 1, 2000
                                  • 0 Attachment
                                    Dear Brian,
                                    Thanks for the info. Is this the study where you are randomly assigned
                                    to receive one of the 4 combinations, but have no say-so on which you get?
                                    I wish the study included more than just relapsers. I'm eager to hear the
                                    results!
                                    Claudine


                                    >From: "gorski" <gorski@...>
                                    >
                                    >There is a study in progress with the above three. The one study I know of
                                    >has four arms as follows:
                                    >
                                    >Randomized PEG study (ROCHE) with four arms
                                    >for relapsers:
                                    >
                                    >1) PEG plus Ribavirin
                                    >2) PEG plus Amantidine
                                    >3) PEG plus Ribaviron & Amantidine
                                    >4) PEG plus Cellcept
                                    >
                                    >Brian
                                    >
                                    >

                                    ________________________________________________________________________
                                    Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                                  • Claudine Crews
                                    Pat, I m sure you know what I think! I m all for daily dosing, for everyone. You won t run out early on the interferon, at least you shouldn t, because there
                                    Message 17 of 28 , Jun 1, 2000
                                    • 0 Attachment
                                      Pat,
                                      I'm sure you know what I think! I'm all for daily dosing, for
                                      everyone. You won't run out early on the interferon, at least you
                                      shouldn't, because there is always overfill. What you run out on is
                                      needles. I've heard that the pharmacy's will often give or sell you extras.
                                      When I was on combo I ended up with a whole bunch of extra needles and
                                      syringes because I was picky about them, and if I didn't like what was
                                      packaged with the vials I asked for something different.
                                      People who's doctor won't prescribe daily dosing usually do 1.5mu daily,
                                      since they can only work with what they have. Usually when a doctor is
                                      prescribing daily dosing the doctor usually prescribes more, either 3mu or
                                      5mu daily. At 1.5mu daily you are only going over the 3 times a week dosing
                                      by 1.5mu, and that's not much.
                                      I am not normally in favor of doing something behind your doctor's
                                      back, and I think it would be better to try to get him to agree to this. If
                                      he is at all reasonable I don't see why he could object too much. You are
                                      already on the combo, and tolerating it well. The dose is just not that
                                      much more, so negligible it's not worth mentioning. The only thing you are
                                      really changing is the frequency of the dosing. You don't even need to
                                      change the prescription. You just need extra needles. However, ultimately
                                      it is YOUR liver, your life, and you have to do what you think is best for
                                      you. You are a 1b, and you need every bit of help you can get. I can
                                      understand your husband's concerns, after all we were all taught to trust
                                      the doctor, and just do what he/she says. But now days, with all the law
                                      suits against doctors, it's easy to understand why they might be afraid to
                                      stick their necks out and go against FDA guidelines, even if that would be
                                      the best thing for you. Also, I go back to what I've said before about
                                      doctors being up to date. Unless they are continually reading all the
                                      journal articles and attending the conferences they will be behind in the
                                      latest information on anything to do with this disease, and that includes
                                      info on daily dosing. Many have seen studies that start with daily dosing,
                                      but then switch to 3 times a week dosing, and the outcomes with those
                                      studies weren't much of an improvement.
                                      I'm afraid I could go on and on about this! So I won't! Ok, that's
                                      what I think. Good luck. When will your doctor do your first PCR?
                                      Claudine


                                      >From: "alley/Patricia" <alleypat@...>
                                      >However, he thinks I should have doctor approval. I told him the doctor
                                      >won't approve it cause it's not approved by FDA etc but everything I've
                                      >read
                                      >tells me that if I can attack the virus nonstop as much as possible the
                                      >first 6 months, I've got a better chance, having 1b, at remission.
                                      >I'm doing 3mil units (?) 3 x a week. Now if I go every other day, I assume
                                      >I
                                      >stay the same there (I'll just run out faster, but I can reorder a little
                                      >early and so what if I run out at week 40 something instead of 48 if I've
                                      >got it kicked by 6 months)?
                                      >For those who do daily, is it less interferon? 1.5?
                                      >What do yall think?
                                      >alley/Patricia

                                      ________________________________________________________________________
                                      Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                                    • Jane2370@aol.com
                                      In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time, claudinecrews@hotmail.com writes:
                                      Message 18 of 28 , Jun 1, 2000
                                      • 0 Attachment
                                        In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time,
                                        claudinecrews@... writes:

                                        << it's easy to understand why they might be afraid to
                                        stick their necks out and go against FDA guidelines, >>

                                        I'm sorry - I'm not getting this FDA guideline thing. I go to a liver
                                        specialist in Manhattan and he prescribes all his patients this way -- daily
                                        shots.
                                        Could it really be dependent on the insurance company? Gee, that would be a
                                        surprise...not.

                                        Peace,
                                        Jane
                                      • Claudine Crews
                                        Dear Jane, The insurance CAN be a problem, they can say anything more than 3 times a week is experimental, and refuse to pay for more than that. But the
                                        Message 19 of 28 , Jun 2, 2000
                                        • 0 Attachment
                                          Dear Jane,
                                          The insurance CAN be a problem, they can say anything more than 3 times
                                          a week is experimental, and refuse to pay for more than that. But the
                                          doctor would have to prescribe it first in order to know if they would pay
                                          or not. And there are just too many people out there like you, getting daily
                                          dosing, to think it would always be insurance problems. No, you just are
                                          one of the lucky ones who's doctor WILL prescribe daily. Many just won't do
                                          it. They could, but they just WON'T. Also, as far as insurance goes, many
                                          times if the doctor will just go to bat for you, and explain why you need
                                          what they are refusing to pay, the insurance company will reverse it's
                                          decision. So again, it goes back to the doctor. My doctor is one of the
                                          ones who won't prescribe daily injections. He doesn't think they work any
                                          better. He's attending a conference later this month, maybe he'll learn
                                          something there. Unfortunately I'm stuck with him for the next 7 months.
                                          Fortunately, I can afford to wait, my last biopsy on my liver was only
                                          stage 1, and 53 weeks of treatment probably improved it's condition some.
                                          Claudine


                                          >From: Jane2370@...
                                          >In a message dated 6/2/00 1:46:08 AM Eastern Daylight Time,
                                          >claudinecrews@... writes:
                                          ><< it's easy to understand why they might be afraid to
                                          > stick their necks out and go against FDA guidelines, >>
                                          >I'm sorry - I'm not getting this FDA guideline thing. I go to a liver
                                          >specialist in Manhattan and he prescribes all his patients this way --
                                          >daily
                                          >shots.
                                          >Could it really be dependent on the insurance company? Gee, that would be
                                          >a
                                          >surprise...not.


                                          ________________________________________________________________________
                                          Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                                        • alley/Patricia
                                          Sharon.. Caremark provides my combo alley/Patricia ICQ 12631861 alleypat@flash.net http://www.flash.net/~alleypat
                                          Message 20 of 28 , Jun 2, 2000
                                          • 0 Attachment
                                            Sharon.. Caremark provides my combo
                                            alley/Patricia
                                            ICQ 12631861
                                            alleypat@...
                                            http://www.flash.net/~alleypat
                                          • gorski
                                            Claudine: Yes. No say since you are randomized . Brian ... assigned
                                            Message 21 of 28 , Jun 3, 2000
                                            • 0 Attachment
                                              Claudine:

                                              Yes. "No say" since you are 'randomized'.

                                              Brian


                                              >Dear Brian,
                                              > Thanks for the info. Is this the study where you are randomly
                                              assigned
                                              >to receive one of the 4 combinations, but have no say-so on which you get?
                                              >I wish the study included more than just relapsers. I'm eager to hear the
                                              >results!
                                              >Claudine
                                              >
                                              >
                                              >>From: "gorski" <gorski@...>
                                              >>
                                              >>There is a study in progress with the above three. The one study I know of
                                              >>has four arms as follows:
                                              >>
                                              >>Randomized PEG study (ROCHE) with four arms
                                              >>for relapsers:
                                              >>
                                              >>1) PEG plus Ribavirin
                                              >>2) PEG plus Amantidine
                                              >>3) PEG plus Ribaviron & Amantidine
                                              >>4) PEG plus Cellcept
                                              >>
                                              >>Brian
                                              >>
                                              >>
                                              >
                                            • LEST2001@aol.com
                                              In a message dated 6/1/00 9:44:37 PM Pacific Daylight Time, Jane2370@aol.com writes:
                                              Message 22 of 28 , Jun 3, 2000
                                              • 0 Attachment
                                                In a message dated 6/1/00 9:44:37 PM Pacific Daylight Time, Jane2370@...
                                                writes:

                                                << << For those who do daily, is it less interferon? 1.5?

                                                Patricia - I do daily shots of 3 million. I never heard of anyone doing
                                                less >>

                                                During my treatment I was doing 5 million IU daily for the first 6
                                                months, and the went to 3 million IU daily for the last 5 months of
                                                treatment. In the study I was in there was some people doing as much a 10
                                                million IU daily.
                                                Take care,
                                                Les
                                              • Jane2370@aol.com
                                                In a message dated 6/4/00 12:23:38 AM Eastern Daylight Time, LEST2001@aol.com writes:
                                                Message 23 of 28 , Jun 4, 2000
                                                • 0 Attachment
                                                  In a message dated 6/4/00 12:23:38 AM Eastern Daylight Time, LEST2001@...
                                                  writes:

                                                  << During my treatment I was doing 5 million IU daily for the first 6
                                                  months, and the went to 3 million IU daily for the last 5 months >>

                                                  I stand corrected! I forgot that...and I know you wrote it, previously.
                                                  Well, I am on heavy medication - doncha know?! lol.
                                                  BTW - do you know the studys' results? Or is it too early? Just curious.

                                                  Peace,
                                                  Jane
                                                • LEST2001@aol.com
                                                  No, I don t know the results form my study yet. I do know that I went undetectable the first two weeks of treatment, and have stayed same ever sense. Take
                                                  Message 24 of 28 , Jun 4, 2000
                                                  • 0 Attachment
                                                    No, I don't know the results form my study yet. I do know that I went
                                                    undetectable the first two weeks of treatment, and have stayed same ever
                                                    sense.
                                                    Take care,
                                                    Les
                                                  • Claudine Crews
                                                    Dear Les, I ve heard that the earlier you go undetectable the better chance you have of sustaining that response. I d say things are looking good for you! Good
                                                    Message 25 of 28 , Jun 4, 2000
                                                    • 0 Attachment
                                                      Dear Les,
                                                      I've heard that the earlier you go undetectable the better chance you
                                                      have of sustaining that response. I'd say things are looking good for you!
                                                      Good luck!
                                                      Claudine

                                                      >From: LEST2001@...
                                                      > No, I don't know the results form my study yet. I do know that I went
                                                      >undetectable the first two weeks of treatment, and have stayed same ever
                                                      >sense.
                                                      >Take care,
                                                      >Les

                                                      ________________________________________________________________________
                                                      Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                                                    • Suzy Balone
                                                      Alley, Probably wouldn t even run out because there is an extra dose in the pens to compensate for air bubbles and the removal of them. so you could still go
                                                      Message 26 of 28 , Jun 5, 2000
                                                      • 0 Attachment
                                                        Alley,

                                                        Probably wouldn't even run out because there is an extra dose in the pens to
                                                        compensate for air bubbles and the removal of them. so you could still go
                                                        the full treatment course. I have been using my extra and it really helped
                                                        because a pen fell out of refrigerator and so i lost it all as my company
                                                        set it on top of the frig!! I have wondered the same thing but mostly
                                                        because on the 3 day of the weeks i usually feel really bad maybe because
                                                        i've gone so long without an injection? dOESN'T ALWAYS WORK THAT WAY
                                                        SOMETIMES FEEL WORSE wED but heck its worth a shot and you already have the
                                                        med. somepeople are already doing it every other day or even every day for
                                                        those fortunate to have docs that will treat them aggressively.

                                                        Good Luck
                                                        Suzy


                                                        ________________________________________________________________________
                                                        Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com
                                                      • Mzgee1@aol.com
                                                        The drug s name you refer to is Amantidine...mzgee We can do no great things; only small things with great Love. Mother Teresa
                                                        Message 27 of 28 , Jun 6, 2000
                                                        • 0 Attachment
                                                          The drug's name you refer to is Amantidine...mzgee

                                                          "We can do no great things; only small things with great Love." Mother Teresa
                                                        • Gail Samples
                                                          ... What s cellcept? Gail
                                                          Message 28 of 28 , Jun 6, 2000
                                                          • 0 Attachment
                                                            ----------
                                                            >From: "gorski" <gorski@...>

                                                            > There is a study in progress with the above three. The one study I know of
                                                            > has four arms as follows:
                                                            >
                                                            > Randomized PEG study (ROCHE) with four arms
                                                            > for relapsers:
                                                            >
                                                            > 1) PEG plus Ribavirin
                                                            > 2) PEG plus Amantidine
                                                            > 3) PEG plus Ribaviron & Amantidine
                                                            > 4) PEG plus Cellcept
                                                            >
                                                            > Brian
                                                            >
                                                            >
                                                            What's cellcept?

                                                            Gail
                                                          Your message has been successfully submitted and would be delivered to recipients shortly.