Aa
Double Dose -- Worrying After SVR/The Emotional Investment
DD in prev thread re: SVR/Occult, etc
(http://www.medhelp.org/forums/Hepatitis/messages/43754.html):
I don't know about all of you, but I start to feel like I am talking myself in circles. Lots of energy and brainpower is being expended, to no apparent end. Depressing. And what's worse, the mainstream HCV medical community is barely involved (or interested) in these issues.
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Yeah, the more you learn the less you know :) I think HR related with me ways back when I said I don't even agree with myself at times:)
Personally, don't think it's worth the emotional investment. Intellectual investment maybe, professional investment (like HR), certainly. But for many of us so personally invested in HCV, I think worrying about what might be can be counter productive.
What we do know is that certain healthy living choices like diet, weight-managment, exercise, etc, can do nothing but help the immune system. And as HR suggests, careful monitoring of the liver post SVR seems very reasonable as well. Then, if something pops up, we deal with it as best we can given the knowledge and technology of the moment.
On a very personal note, closing in fast on age 60, my liver problems are fast been relegated down the ladder of health concerns. While no guarantees, my SVR suggests the unlikelihood of cirrhosis and HCC. In fact, according to my last Fibroscan, my liver histology has already improved close to a stage.
...
(http://www.medhelp.org/forums/Hepatitis/messages/43754.html):
I don't know about all of you, but I start to feel like I am talking myself in circles. Lots of energy and brainpower is being expended, to no apparent end. Depressing. And what's worse, the mainstream HCV medical community is barely involved (or interested) in these issues.
------------------------------------------------
Yeah, the more you learn the less you know :) I think HR related with me ways back when I said I don't even agree with myself at times:)
Personally, don't think it's worth the emotional investment. Intellectual investment maybe, professional investment (like HR), certainly. But for many of us so personally invested in HCV, I think worrying about what might be can be counter productive.
What we do know is that certain healthy living choices like diet, weight-managment, exercise, etc, can do nothing but help the immune system. And as HR suggests, careful monitoring of the liver post SVR seems very reasonable as well. Then, if something pops up, we deal with it as best we can given the knowledge and technology of the moment.
On a very personal note, closing in fast on age 60, my liver problems are fast been relegated down the ladder of health concerns. While no guarantees, my SVR suggests the unlikelihood of cirrhosis and HCC. In fact, according to my last Fibroscan, my liver histology has already improved close to a stage.
...
My guess is Dr. Paulette Hahn, Clinical Assistant Professor of Medicine,Board Certification: Internal Medicine, Rheumatology
Clinical Faculty per http://www.medicine.ufl.edu/rheuma/rheuma_faculty.asp
http://tinyurl.com/ybpbox
No link from bio but you could "google" her name more.
Be well,
-- Jim
Clinical Faculty per http://www.medicine.ufl.edu/rheuma/rheuma_faculty.asp
http://tinyurl.com/ybpbox
No link from bio but you could "google" her name more.
Be well,
-- Jim
Jim,
Thank you so much for your kind comments. They are so appreciated on a day like today. I have not been to Shands yet so I am hesitant to give out any info-but, today, being today, I thought "what the heck!" The only info that was given to me is that she is a woman that my Doctor has worked with before & that she would get to the bottom of all this. Her last name is Hahn. I have not felt like being on-line & researching her yet- & knowing that you will, please let me know, what you find? I think her first name was Henrietta? & she is in Gainesville, and I'm not even sure that the last name is spelled correctly? Lots of help, I am. huh?
I read a later post where you commented on sharing Doctor information-I think that's an excellent idea. I see Dr. James H. Johnson, in Lakeland, FL. He is incredible, takes so much time for you, attends all seminars regarding new up-dates & really cares about each case individually. He has told me to call him at home, even if it's that I just need to talk. He is on many Hepatitus Boards and is the truest, kindest, most imformative Doctor & person, that you would ever meet. I would not hesitate to recommend him to anyone, & I would also help to set up a early appt., if needed.
It's been a bad day for me, but we really can't look at these days in this fashion.I did work for Arnold Palmer Hospital for Children and Women, in Orlando, and believe me, that's where you really see & feel bad & good days. The aching is non-stop now & I almost fell again last night, so I am pretty much home-bound until I go to Shands. I will definitely pass on any viable info., after the appt.
Mark,
What a loaded question you passed on! I have no idea of your stats or age, but I think this is what you have to evaluate. I am 63, & I really believe that from reading many posts, that younger people have less sides and progress much easier. This might just be my personal assumption & is possible that it has nothing to do with it. I gave treatment everything I had plus, and my body just would not tolerate or accept the meds. I did Peg-Intron, Infergen and Pegasys. At the onset of finding out that I had the disease I panicked and not knowing anything about it, I rushed to the first Gastro who was recommended to me.That was a wasted 48 wks. Again, my opinion, but Gastros do not specialize in Hep and you get bare minimum treatment.
I took a 6 mth. break researching the disease & finding the best Hepotalagist that I could find. I travel 250 mi., just to go to him. He & I both agree that I will not go any further with the interferon treatment that is available at this time. If I had been smart & not over reacted, I am not sure that I would have treated. I am a 1b, stage 3, grade 4, with beginning cirrhosis. My biopsy showed that I have carried for at least 20-30 yrs. I only hope that all of this highly toxic treatment did some good.
So, I guess my answer would be to hold off until something less invasive appears. It will! As far as maintenance dosing, it also wiped me out, so it depends on what stage your in & how your body reacted to the drugs?
I hope this helps a little. It is very truthful about my case, but all cases are different. I pray to God everyday and ask him,"what do you want me to do with this, as I know that their is a purpose," that I acquired it.
I wish you the very best and I am sure that whatever choice you make will be the right one for you. Please keep me posted.
Sandy
Thank you so much for your kind comments. They are so appreciated on a day like today. I have not been to Shands yet so I am hesitant to give out any info-but, today, being today, I thought "what the heck!" The only info that was given to me is that she is a woman that my Doctor has worked with before & that she would get to the bottom of all this. Her last name is Hahn. I have not felt like being on-line & researching her yet- & knowing that you will, please let me know, what you find? I think her first name was Henrietta? & she is in Gainesville, and I'm not even sure that the last name is spelled correctly? Lots of help, I am. huh?
I read a later post where you commented on sharing Doctor information-I think that's an excellent idea. I see Dr. James H. Johnson, in Lakeland, FL. He is incredible, takes so much time for you, attends all seminars regarding new up-dates & really cares about each case individually. He has told me to call him at home, even if it's that I just need to talk. He is on many Hepatitus Boards and is the truest, kindest, most imformative Doctor & person, that you would ever meet. I would not hesitate to recommend him to anyone, & I would also help to set up a early appt., if needed.
It's been a bad day for me, but we really can't look at these days in this fashion.I did work for Arnold Palmer Hospital for Children and Women, in Orlando, and believe me, that's where you really see & feel bad & good days. The aching is non-stop now & I almost fell again last night, so I am pretty much home-bound until I go to Shands. I will definitely pass on any viable info., after the appt.
Mark,
What a loaded question you passed on! I have no idea of your stats or age, but I think this is what you have to evaluate. I am 63, & I really believe that from reading many posts, that younger people have less sides and progress much easier. This might just be my personal assumption & is possible that it has nothing to do with it. I gave treatment everything I had plus, and my body just would not tolerate or accept the meds. I did Peg-Intron, Infergen and Pegasys. At the onset of finding out that I had the disease I panicked and not knowing anything about it, I rushed to the first Gastro who was recommended to me.That was a wasted 48 wks. Again, my opinion, but Gastros do not specialize in Hep and you get bare minimum treatment.
I took a 6 mth. break researching the disease & finding the best Hepotalagist that I could find. I travel 250 mi., just to go to him. He & I both agree that I will not go any further with the interferon treatment that is available at this time. If I had been smart & not over reacted, I am not sure that I would have treated. I am a 1b, stage 3, grade 4, with beginning cirrhosis. My biopsy showed that I have carried for at least 20-30 yrs. I only hope that all of this highly toxic treatment did some good.
So, I guess my answer would be to hold off until something less invasive appears. It will! As far as maintenance dosing, it also wiped me out, so it depends on what stage your in & how your body reacted to the drugs?
I hope this helps a little. It is very truthful about my case, but all cases are different. I pray to God everyday and ask him,"what do you want me to do with this, as I know that their is a purpose," that I acquired it.
I wish you the very best and I am sure that whatever choice you make will be the right one for you. Please keep me posted.
Sandy
O.K. cutey,ya convinced me-i'm getting circumcised again!!.....seriously i am experiencing similiar post-trx aches,anxietys & am trying hard to get on with other stuff....but like a moth to the flame i clumsily flutter back to the boards ....
Thanks,,,,,
I did call about the fibroscan before going up, even though really wasn't my reason for wanting to go . I had asked the girl on the phone about it.. I said,," I understand Dr. A has the fibroscan, I haven't had a bx as of yet,,,I don't know if he would want to use the scan on me and if so, would he want me to get a bx first and reschedule my appointment?" She asked me to hold on and then she came back and said that he doesn't scan everyone that has a bx. He has to see everything.
I told her that was fine with me because my main concern was getting some questions answered and getting a plan of some sort of what to do/or not to do.
When the doctor at his office was interviewing me, I didn't ask anything about the scan, I knew the subject would come up and it did.
He assumed I would be getting bx and then he said I would be able to keep an eye on things (can't remember exact wording) down the road by getting fibroscans.
But then when Doc A came in, he said no needed bx, so my thoughts were/are, if I don't need a bx, I don't need a scan. Maybe as years go by, just to check on (hopefully svr) if residual can do any damage or whatever.
Jim, the Peg Intron or whatever its called, the Schering Plough one....do I remember correctly that that one doesn't have prefilled syringes?? Fun for me, brian fog before I start, I can't imagine if I have to mix something. I guess I'll get used to it, everyone else did that used it. I know you're going to tell me to stop worrying about something like that.
I asked him about the harder sx with it and he said he uses both at the office and its about the same.
I am still going over by Dr D also. If this Doc Brown is in my plan, that is even closer. Its right over the bridge, easy.
I had asked the other doc at Dr.A's office about the vertex and he said that that is just geno 1's in the trial, so wouldn't be for me. I guess I may as well tx now then while I have 0 damage. Plus I just want this out of me and hopefully tx will work.
The doc he reccomended in state may be too far if I had the spelling correct. Looked in my book and it looks like he may be way down jersey. At least it will be good to know his name in case someone who lives in that area needs a doc that is good. So thats the story. I just want to get started at this point. Can't take the wait anymore. But I do feel so much better after talking to Dr A. Thanks again. You really helped my husband too. He tries to not show me how worried he is over me and this whole life changing mess we are all in, but the way he was expressing his gratitude and relief to Dr.A after talking to him, I realized how worried he is. Its great to have a husband who takes such good care of me. I thank God everyday for him,and I hope for his sake and my mothers, even more than for my own sake, that I clear this thing. I can't stand knowing that they are worried about me.
But ya know what gave me a real perspective on things...seeing the children entering the childrens hospital. So sad. Heart breaking. The parents and their ability to cope, I'm telling ya, thats just the saddest thing. Lots of things to pray for. No one should ever complain they have nothing to do or they are boored. Pray for a few hours, that is the most productive thing a person can do with their time.
okay Jim, thanks again and i'll keep you posted.
I did call about the fibroscan before going up, even though really wasn't my reason for wanting to go . I had asked the girl on the phone about it.. I said,," I understand Dr. A has the fibroscan, I haven't had a bx as of yet,,,I don't know if he would want to use the scan on me and if so, would he want me to get a bx first and reschedule my appointment?" She asked me to hold on and then she came back and said that he doesn't scan everyone that has a bx. He has to see everything.
I told her that was fine with me because my main concern was getting some questions answered and getting a plan of some sort of what to do/or not to do.
When the doctor at his office was interviewing me, I didn't ask anything about the scan, I knew the subject would come up and it did.
He assumed I would be getting bx and then he said I would be able to keep an eye on things (can't remember exact wording) down the road by getting fibroscans.
But then when Doc A came in, he said no needed bx, so my thoughts were/are, if I don't need a bx, I don't need a scan. Maybe as years go by, just to check on (hopefully svr) if residual can do any damage or whatever.
Jim, the Peg Intron or whatever its called, the Schering Plough one....do I remember correctly that that one doesn't have prefilled syringes?? Fun for me, brian fog before I start, I can't imagine if I have to mix something. I guess I'll get used to it, everyone else did that used it. I know you're going to tell me to stop worrying about something like that.
I asked him about the harder sx with it and he said he uses both at the office and its about the same.
I am still going over by Dr D also. If this Doc Brown is in my plan, that is even closer. Its right over the bridge, easy.
I had asked the other doc at Dr.A's office about the vertex and he said that that is just geno 1's in the trial, so wouldn't be for me. I guess I may as well tx now then while I have 0 damage. Plus I just want this out of me and hopefully tx will work.
The doc he reccomended in state may be too far if I had the spelling correct. Looked in my book and it looks like he may be way down jersey. At least it will be good to know his name in case someone who lives in that area needs a doc that is good. So thats the story. I just want to get started at this point. Can't take the wait anymore. But I do feel so much better after talking to Dr A. Thanks again. You really helped my husband too. He tries to not show me how worried he is over me and this whole life changing mess we are all in, but the way he was expressing his gratitude and relief to Dr.A after talking to him, I realized how worried he is. Its great to have a husband who takes such good care of me. I thank God everyday for him,and I hope for his sake and my mothers, even more than for my own sake, that I clear this thing. I can't stand knowing that they are worried about me.
But ya know what gave me a real perspective on things...seeing the children entering the childrens hospital. So sad. Heart breaking. The parents and their ability to cope, I'm telling ya, thats just the saddest thing. Lots of things to pray for. No one should ever complain they have nothing to do or they are boored. Pray for a few hours, that is the most productive thing a person can do with their time.
okay Jim, thanks again and i'll keep you posted.
Good advice to us all, for sure. The concerns of DD I truly understand also . There are just too many unknowns with Hep C and if you're not feeling well after svr, as he is not feeling all that great at times, a person can not help but mentally dwell in a land that he hates to visit. We all go visit there all too often, pre tx, during tx and after tx. I guess its because though someone may svr, we worry about it returning. Those who are in remission with cancer probably have the same concerns and I think we just have to re-train our minds or personalities to think that we just have to look at today and if the person is svr, great,, if they are not,, hold on to hope for new drugs. What Sandy is going through is terrible. Our prayers joined to those of Sandy's and others will bring change. Please everyone continue to pray for each other and for the doctors and scientists to get wisdom from above.
I googled "stress and the effects on the immune system" and it is quite amazing what our "sad" or negative thoughts can do to us physically. Of course when you are in pain,it is very hard to not stress, but others, such as myself, who haven't begun and aren't having any tough physical symptoms to deal with,,our worse enemy, besides the virus, is our thoughts and they DO affect us. Our biggest battle sometimes is with our own mind.
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Off subject...went up to DR. A. My husband and I loved him!!! He is so great! So, so nice!! Funny too, great sense of humor. I first saw a doctor that works with him. He spent a lot of time with me, asked me to tell him what I know about hep c and from there he discussed some stuff as far as my health concerns. They looked all my records over before they saw me, then I was called in. after discussing everything with that doc, Dr. A came in. Very pleasant. Very friendly. Adressed me by my first name, which for some reason always makes things more friendly and easy to converse,, guess what he told me!!! He said that because my fibrosure was 0, I DO NOT NEED TO GET A BX!! He said the reason is because with 0 damage the FIBROSURE IS 90% ACCURATE, WHILE THE BX WITH 0 DAMAGE IS ONLY 80% ACCURATE. Great news! Well in that case,IMO, doctors should always do fibrosure test before they bx, but they don't. I almost got a bx with the first doc I went to, glad I didn't. I know how people don't always read things correctly on forum, so to make things clear, he didn't say fibrosure is better than a bx, BUT IN MY CASE IT IS. I know you understand, but ya know why I did that.
That was the first time I ever heard that,, and that in and of itself would have been worth the trip. When he first entered the room he said "myown(of course he used my real first name) you came up here just to see me?"( I know he was just playing around, he know people travel to see him) I said "I sure did,,I am getting different strategies and answers/no answers from every doc I see and figured it was time to see one of the best."
Told me I should definitely tx, good age etc..skinny white girl line. ha ha. We cracked up laughing when he said that. I told him I was alot skinnier, but gained about 25 lbs or so thinking I was doing the right thing. Told him I would loose it and he said, no don't worry about it, he wants me on weight based. I asked him what if the doc I go to only uses peggasys and he said he wasn't as concerned about the interferon as he is riba. He wants to hit it hard in the beginning. He said he will send a plan and I am to give it to the doc I tx with. He mentioned doc J, but I told him he wasn't in my plan and I don't think he accepts insurance.
Asked him about the ANA that I have and he said "forget about it," 25% o people with hep have it." If any other doctor told me that, i wouldn't be satisfied,thinking a "cutting edge doc would have the answer, but knowing who he is, I am satisfied because IF there was a clear cut answer he would have given it.
He received a call from Paris while with me, most doctors would tell me to wait while they took the call, but he was nice enough to say he was with a patient and he'd call back. i think that was very considerate.
He told me of a doctor Brown in Columbia Pres. and another doc in my state, but the other doc was trying to find him on the computer as we spoke and couldn't find him at that moment. They will give me the doctors names when they send the plan of tx. He also said he wants me to get pcr the 2nd and 4th week. He expects me to be clear at 4 weeks. I want to feel confident about that, but those of us who have this disease, well know, one day your confident and the next day you're not.
As far as my cat scan and the lesions (cysts) he said, don't worry, they are nothing. My liver friend told me the same thing. I asked him about the lymp node that "appear to be reactive," and he just smiled, and said they are nothing.(drainage) I believe he said because of the virus. My other doc use to have everyone bring a tape recorder,knowing how hard it is to remember what a doc says word for word,especially for us menopausal women. I wish I had a recorder, but I remember most of what he said and I'll receive a plan in the mail anyhow.
When he got up to leave he shook my husbands hand,I was on sitting on the exam table,,,he stands in front of me and puts his arms around me and gives me a big hug and says, "good bye Myown, it was nice to meet you, etc etc."
I thought that was so nice to give a hug like that. MY husband was so touched and impressed by Doc A. My husband told him that this was the best decision we made by comming up and thanked him. I told him I wish I lived up there so he could be my doctor.
Mkeela is lucky to have him as her doc. The doctor that works with him was so so nice also. They really make you feel comfortable. When doc A phone call came through, it was something from star wars or something. no ring or music, something like " this is the dark force, blah blah blah (deep voice). It was so funny, something you would expect a teenager to have programed into his phone, not him. It showed his sense of humor right from the start.
So, thanks for letting me know about Dr. A. My husband and I just love him and now I will have a plan of tx to hand to a doctor and I can contact Dr. A and the other doc with any of my concerns along the way.
Sorry for the never ending post. hope all is well with everyone. haven't had a chance to catch up on threads to see how everyone is doing.
Gotta run, see ya
I googled "stress and the effects on the immune system" and it is quite amazing what our "sad" or negative thoughts can do to us physically. Of course when you are in pain,it is very hard to not stress, but others, such as myself, who haven't begun and aren't having any tough physical symptoms to deal with,,our worse enemy, besides the virus, is our thoughts and they DO affect us. Our biggest battle sometimes is with our own mind.
-----------------------------------------------------------------
Off subject...went up to DR. A. My husband and I loved him!!! He is so great! So, so nice!! Funny too, great sense of humor. I first saw a doctor that works with him. He spent a lot of time with me, asked me to tell him what I know about hep c and from there he discussed some stuff as far as my health concerns. They looked all my records over before they saw me, then I was called in. after discussing everything with that doc, Dr. A came in. Very pleasant. Very friendly. Adressed me by my first name, which for some reason always makes things more friendly and easy to converse,, guess what he told me!!! He said that because my fibrosure was 0, I DO NOT NEED TO GET A BX!! He said the reason is because with 0 damage the FIBROSURE IS 90% ACCURATE, WHILE THE BX WITH 0 DAMAGE IS ONLY 80% ACCURATE. Great news! Well in that case,IMO, doctors should always do fibrosure test before they bx, but they don't. I almost got a bx with the first doc I went to, glad I didn't. I know how people don't always read things correctly on forum, so to make things clear, he didn't say fibrosure is better than a bx, BUT IN MY CASE IT IS. I know you understand, but ya know why I did that.
That was the first time I ever heard that,, and that in and of itself would have been worth the trip. When he first entered the room he said "myown(of course he used my real first name) you came up here just to see me?"( I know he was just playing around, he know people travel to see him) I said "I sure did,,I am getting different strategies and answers/no answers from every doc I see and figured it was time to see one of the best."
Told me I should definitely tx, good age etc..skinny white girl line. ha ha. We cracked up laughing when he said that. I told him I was alot skinnier, but gained about 25 lbs or so thinking I was doing the right thing. Told him I would loose it and he said, no don't worry about it, he wants me on weight based. I asked him what if the doc I go to only uses peggasys and he said he wasn't as concerned about the interferon as he is riba. He wants to hit it hard in the beginning. He said he will send a plan and I am to give it to the doc I tx with. He mentioned doc J, but I told him he wasn't in my plan and I don't think he accepts insurance.
Asked him about the ANA that I have and he said "forget about it," 25% o people with hep have it." If any other doctor told me that, i wouldn't be satisfied,thinking a "cutting edge doc would have the answer, but knowing who he is, I am satisfied because IF there was a clear cut answer he would have given it.
He received a call from Paris while with me, most doctors would tell me to wait while they took the call, but he was nice enough to say he was with a patient and he'd call back. i think that was very considerate.
He told me of a doctor Brown in Columbia Pres. and another doc in my state, but the other doc was trying to find him on the computer as we spoke and couldn't find him at that moment. They will give me the doctors names when they send the plan of tx. He also said he wants me to get pcr the 2nd and 4th week. He expects me to be clear at 4 weeks. I want to feel confident about that, but those of us who have this disease, well know, one day your confident and the next day you're not.
As far as my cat scan and the lesions (cysts) he said, don't worry, they are nothing. My liver friend told me the same thing. I asked him about the lymp node that "appear to be reactive," and he just smiled, and said they are nothing.(drainage) I believe he said because of the virus. My other doc use to have everyone bring a tape recorder,knowing how hard it is to remember what a doc says word for word,especially for us menopausal women. I wish I had a recorder, but I remember most of what he said and I'll receive a plan in the mail anyhow.
When he got up to leave he shook my husbands hand,I was on sitting on the exam table,,,he stands in front of me and puts his arms around me and gives me a big hug and says, "good bye Myown, it was nice to meet you, etc etc."
I thought that was so nice to give a hug like that. MY husband was so touched and impressed by Doc A. My husband told him that this was the best decision we made by comming up and thanked him. I told him I wish I lived up there so he could be my doctor.
Mkeela is lucky to have him as her doc. The doctor that works with him was so so nice also. They really make you feel comfortable. When doc A phone call came through, it was something from star wars or something. no ring or music, something like " this is the dark force, blah blah blah (deep voice). It was so funny, something you would expect a teenager to have programed into his phone, not him. It showed his sense of humor right from the start.
So, thanks for letting me know about Dr. A. My husband and I just love him and now I will have a plan of tx to hand to a doctor and I can contact Dr. A and the other doc with any of my concerns along the way.
Sorry for the never ending post. hope all is well with everyone. haven't had a chance to catch up on threads to see how everyone is doing.
Gotta run, see ya
I'm so happy it worked out for you! Everything you said is consistent with what I know about Dr. A. You didn't mention, Fibroscan, so I assume you didn't get one. Curious, if the subject came up, if you want to discuss.
As I've probably said too many times I have an enormous amount of respect for Dr. A., and all the reasons he wants you to treat -- relatively young, skinny, white girl with hardly any fibrosis and maybe low pre-tx viral load -- are classic arguments for treating. That said, of course you already know I'd wait if in your shoes -- at least a year to take a peek at the newer trial results -- but that's me, and this is you.
What happened with Dr. D? At one point I thought your plan was to use him as the treating doctor should you decide to treat. I'd still be open on that one as I'm sure, in a tx scenario, Dr. D and Dr A would be on the same page -- especially in terms of early and frequent vl testing. Might be worth a shorter trip through the bridge or tunnel --however you do it there -- and see how you click with Dr D before going local.
Again, so happy you feel the visit up to Boston was worthwhile.
All the best moving forward.
-- Jim
As I've probably said too many times I have an enormous amount of respect for Dr. A., and all the reasons he wants you to treat -- relatively young, skinny, white girl with hardly any fibrosis and maybe low pre-tx viral load -- are classic arguments for treating. That said, of course you already know I'd wait if in your shoes -- at least a year to take a peek at the newer trial results -- but that's me, and this is you.
What happened with Dr. D? At one point I thought your plan was to use him as the treating doctor should you decide to treat. I'd still be open on that one as I'm sure, in a tx scenario, Dr. D and Dr A would be on the same page -- especially in terms of early and frequent vl testing. Might be worth a shorter trip through the bridge or tunnel --however you do it there -- and see how you click with Dr D before going local.
Again, so happy you feel the visit up to Boston was worthwhile.
All the best moving forward.
-- Jim
Like NYGirl's thread some months ago regarding her visit to Dr. J, your post is so chocked-full of good info, you might consider re-posting it in a thread of its own with a heading that not only suggest a doctor's visit but the Fibrosure/Biopsy thing as well. A subject that comes up from time to time, and like you say, in YOUR case it seems that biopsy may not be called for. I should, however, add that on the Clinical Options web site, Dr. D suggests he would biopsy instead of Fibrosure, but he was non-specific in terms of using stage as a determining factor. I respect both doctors, but when two "biggies" disagree, I'd probably go with what suits me better and that would be not to biopsy -- or maybe my info-starved brain would go with Dr D and biopsy. Fortunatly, never had to make that decision because there was no Fibrosure (or Fibroscan) when they were evaluating my liver.
Anyway, just a thought if you want to re-post. If not, I'm sure someone, at some point, will reference your visit at least in terms of Fibrosure vs Biopsy for an F0 reading.
Anyway, just a thought if you want to re-post. If not, I'm sure someone, at some point, will reference your visit at least in terms of Fibrosure vs Biopsy for an F0 reading.
Googled "Dr. Brown" at Columbia Pres. His credentials are impressive. Also part of the Win-R trial I believe. Given the fact that Dr. A recommended him, the two doctors may have a good working relationship that may work to your advantage. Def check him out if he's in your insurance plan.
Sandy , your post about the effects of long term interferon use is very timely for me at this point in my treatment and appriciate you sharing your experience. I/we have determined that PegIFN/RBV combo therapy isn't working for me and my next step was going to be partial dose PegINF maintenance therapy until such a time that a different treatment protocol with a better projected outcome is made available. I am worried about the very things that are effecting you right now and wondering if I am better off not doing the maintenance dose while waiting for the new treatments to become available. I understand that this isn't something I should be asking of someone I dont know , and on the internet to boot , but I would be very interested in your opinion.
Thank you for taking the time to be here ,
Mark
Thank you for taking the time to be here ,
Mark
They're are variations, but in general Peg Intron is administered with a device called a "Redi-Pen" and Pegasys comes in pre-filled syringes. While I prefer pre-filled syringes -- everything else being equal -- I wouldn't base my choice on that. Both are relatively easy to use. There are certain advantages of both. Some argue that Pegasys gives more dose for the buck for lighter folks like yourself since it's one dose for all weights. Same argument says Peg Intron is better for heavier folks since it's weight based. Other doctors tend to prefer or work with Peg Intron. My understanding is that Dr A uses Peg Intron primarily.
As Dr A says, probably not that important which peg, and certainly not as important as doing weight-based riba. I ended up using Pegasys probably because that is what my tx team uses most and therefore I felt they were more familiar with it. If I had to make the choice again, I might just have easily chosen Peg Intron. I'm glad the trip helped your husband as well. I think the more he feels you are in good hands the less stress he will be under as well.
Take care,
-- Jim
As Dr A says, probably not that important which peg, and certainly not as important as doing weight-based riba. I ended up using Pegasys probably because that is what my tx team uses most and therefore I felt they were more familiar with it. If I had to make the choice again, I might just have easily chosen Peg Intron. I'm glad the trip helped your husband as well. I think the more he feels you are in good hands the less stress he will be under as well.
Take care,
-- Jim
I was really not being as dark or cynical in my commentary today as it might seem. In fact, more the opposite: I think that for me it is time to back away from my focus on the HCV related research and intellectual unknowns being pursued by the scientific community and re-focus on my own health, family and business. The comments are very correct, made by several of you, that it does little good to obsess.
I saw a doctor today regarding some ongoing post-tx parotid and lymph issues, and his stance on the HCV post-tx/interferon issues was: "whatever it is, it is." " You will have to deal with the issues, and get on with life. Some may fade, and some may be permanent, but no one can tell you what will happen in your case. " He is a top Otolaryngologist, running a department for one of the big research hospitals, and has been involved with lots of post-tx HCV'ers in a consulting capacity. His take was to try not to worry, take what tx has given you, and hope for the best as far as long term side effects. His personal opinion was that whatever you are left with after two or three years will likely be pretty permanent. You might try to minimize the effects with a healthy lifestyle, but as he said, "it will be whatever it will be".
He also commented, "You are really in remission you know, there is no real cure for the virus, as has been thought. Its always going to be there, but under control ,in most cases, forever."
Sounds like some of these doctors, outside the HCV world, are getting pretty up to date on things. All in all I felt better after my visit, and feel the need to move forward. Cuteus basically covered it, and I tend to agree. TnHep also has a point though, that we cannot let up on the research, and scientific advances....we may need some new ideas at some point. We can't totally stick our heads in the sand. But we must also let go, and begin to live again, without constant anxiety and fear.
I hope you are all having a good day.
DoubleDose
I saw a doctor today regarding some ongoing post-tx parotid and lymph issues, and his stance on the HCV post-tx/interferon issues was: "whatever it is, it is." " You will have to deal with the issues, and get on with life. Some may fade, and some may be permanent, but no one can tell you what will happen in your case. " He is a top Otolaryngologist, running a department for one of the big research hospitals, and has been involved with lots of post-tx HCV'ers in a consulting capacity. His take was to try not to worry, take what tx has given you, and hope for the best as far as long term side effects. His personal opinion was that whatever you are left with after two or three years will likely be pretty permanent. You might try to minimize the effects with a healthy lifestyle, but as he said, "it will be whatever it will be".
He also commented, "You are really in remission you know, there is no real cure for the virus, as has been thought. Its always going to be there, but under control ,in most cases, forever."
Sounds like some of these doctors, outside the HCV world, are getting pretty up to date on things. All in all I felt better after my visit, and feel the need to move forward. Cuteus basically covered it, and I tend to agree. TnHep also has a point though, that we cannot let up on the research, and scientific advances....we may need some new ideas at some point. We can't totally stick our heads in the sand. But we must also let go, and begin to live again, without constant anxiety and fear.
I hope you are all having a good day.
DoubleDose
You said:
Sounds like some of these doctors, outside the HCV world, are getting pretty up to date on things.
_____________________________________________________________
"pretty up to date," or maybe knows first hand. We tend to forget that some ot these doctors we see may have had a personal experience with it, either self or family member.
someone had posted that the dermatologist they saw told them that they themselves had svr...so yes its good if they are learning, but we also have to factor in "they may have been once infected also." I forget that myself most of the time.
well said, but, if at any time somebody takes a piece of some tissue, be it sinus or muscle or anything, ask for a PCR for HCV? I think I will, just to see if any other cells met Mr HCV.
Yes, let's learn to live with what we presently have without turning our heads away from new data, especially if it looks like it might adversely affect us. If it is just "there", then we can let it be for now.
Shifting the focus on improving our habits and physical fitness, can only bring better health, and it helps with depression.
Yes, let's learn to live with what we presently have without turning our heads away from new data, especially if it looks like it might adversely affect us. If it is just "there", then we can let it be for now.
Shifting the focus on improving our habits and physical fitness, can only bring better health, and it helps with depression.
I can't even begin to imagine the strength and courage you have to deal with these issues. I hope and pray that you will find both relief for your side effects and better treatments in the future. In the meantime to live as peacefully as possible in the moment as it appears you are. If you don't mind, maybe you could share the name of the doctor who specializes in post-treatment issues. It may be of interest to some here.
All the very best.
-- Jim
All the very best.
-- Jim
Jim, I agree with your comments and I think we have to deal with this on a daily basis, as really none of it makes sense. After 2 failed therapy attempts of 100 wks, and 2 maintenance therapies of 24 wks., I am through with interferons. This doesn't mean that everyone makes the same decisions, as each case is so different & difficult. I pray to God daily that some of this therapy has helped, but in the mean time, it has taken away my quality of life for 3 year.
I have been left with terrible side effects which at this point have been uncontrollable. I knew the stats when I started so I can't blame anyone. I am trying desperately not to blame myself for making the decisions to treat. This is the emotional state I am going through now.
I have been left with Neuropathy of the feet,lower legs & hands,a knee which cannot be diagnosed, but affects my walk,cryoglobulin and a tumor marker. I have seen 16 Doctors and presently my Hepatoligist is making an appt. at Shands for me in Gainesville. The plan being to forget about the Hep C and concentrate fully on the sides. I will see a Doctor who has researched extensively with interferon related side effects. I will keep you all posted. In the mean time after 3 plus yrs., I have had to rethink my health conditions & relentlessly just ordered a walker with a seat,as I have fallen 14 times due to feet numbness. Yesterday, I felt that I for the first time was giving into the disease when all I am really doing is protecting myself so we can treat the sides. This is what I mean by emotional days. One day your up, the next day your down. Makes no sense to me.
For those that are treating or have reached SVR., I am so sincerely happy for you, because the treatment for everyone is horrendous, as we all know and you are winning the battle! Stay strong, eat right, exercise if possible & live well!
Wishing you all the best,
Sandy
I have been left with terrible side effects which at this point have been uncontrollable. I knew the stats when I started so I can't blame anyone. I am trying desperately not to blame myself for making the decisions to treat. This is the emotional state I am going through now.
I have been left with Neuropathy of the feet,lower legs & hands,a knee which cannot be diagnosed, but affects my walk,cryoglobulin and a tumor marker. I have seen 16 Doctors and presently my Hepatoligist is making an appt. at Shands for me in Gainesville. The plan being to forget about the Hep C and concentrate fully on the sides. I will see a Doctor who has researched extensively with interferon related side effects. I will keep you all posted. In the mean time after 3 plus yrs., I have had to rethink my health conditions & relentlessly just ordered a walker with a seat,as I have fallen 14 times due to feet numbness. Yesterday, I felt that I for the first time was giving into the disease when all I am really doing is protecting myself so we can treat the sides. This is what I mean by emotional days. One day your up, the next day your down. Makes no sense to me.
For those that are treating or have reached SVR., I am so sincerely happy for you, because the treatment for everyone is horrendous, as we all know and you are winning the battle! Stay strong, eat right, exercise if possible & live well!
Wishing you all the best,
Sandy
DD, not sure what your health/life issues are, but I find you to be an extremely intelligent and sensitive individual. I hope you find peace in your SVR whether or not you find all the answers. I wish this peace on everyone here, SVR or not. HCV is a difficult journey, may we all have the peace we deserve.
-- Jim
-- Jim
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