Aa
Dr Appointment
OK.
Many of you know my Hep-C information it is as follows.
I am Geno-Type 2B. I was first diagnosed in 1989 through a liver Biopsy. For the next 7 years my Dr's told me that I had a very slow advancing disease and not to worry about it. My mistake, I wish I new then half of what I know now.
At the time of my first tx I was stage 3 Fibrosis and grade 2 inflammation. I did 25 weeks of Rebetron tx, I was clear at 12 weeks, but no post tx PCR was done. I relapsed within 1 1/2 months post tx. About 6 months later Peg-Intron was approved by the FDA and as soon as Kaiser got it I was put on Peg-Intron tx for 24 weeks. I had had a very hard time on the first tx and didn't realize or admit that I had alot of depression, about two months into tx I was hit by insomnia and depression hard. It takes about 3-4 months to see a Kaiser Psychiatrist, so I was out sourced to a contracting Psychiatrist that knew nothing about tx and its side effects. Because of uncooperative behavior of my Kaiser PCP and the Non Kaiser Psychiatrist, I was unable to get any treatment going and had to stop Tx.
I then found my own Psychiatrist who recommended taking 1-2 years off of tx and address the sx left over from the previous treatments.
So 2 years went by and I hooked up with Kaiser so called Hep-c Specialist, he recommended 48 weeks of Peg-Intron, I was able to get him to change to Pegasys only after faxing many studies and information on Pegasys.
18 weeks into tx I was informed that I only had 6 weeks left of tx. I told the tx nurse she was mistaken that I was doing 48 weeks of tx,
Many of you know my Hep-C information it is as follows.
I am Geno-Type 2B. I was first diagnosed in 1989 through a liver Biopsy. For the next 7 years my Dr's told me that I had a very slow advancing disease and not to worry about it. My mistake, I wish I new then half of what I know now.
At the time of my first tx I was stage 3 Fibrosis and grade 2 inflammation. I did 25 weeks of Rebetron tx, I was clear at 12 weeks, but no post tx PCR was done. I relapsed within 1 1/2 months post tx. About 6 months later Peg-Intron was approved by the FDA and as soon as Kaiser got it I was put on Peg-Intron tx for 24 weeks. I had had a very hard time on the first tx and didn't realize or admit that I had alot of depression, about two months into tx I was hit by insomnia and depression hard. It takes about 3-4 months to see a Kaiser Psychiatrist, so I was out sourced to a contracting Psychiatrist that knew nothing about tx and its side effects. Because of uncooperative behavior of my Kaiser PCP and the Non Kaiser Psychiatrist, I was unable to get any treatment going and had to stop Tx.
I then found my own Psychiatrist who recommended taking 1-2 years off of tx and address the sx left over from the previous treatments.
So 2 years went by and I hooked up with Kaiser so called Hep-c Specialist, he recommended 48 weeks of Peg-Intron, I was able to get him to change to Pegasys only after faxing many studies and information on Pegasys.
18 weeks into tx I was informed that I only had 6 weeks left of tx. I told the tx nurse she was mistaken that I was doing 48 weeks of tx,
Wow. Both of you are so strong and I admire you tremendously. I'm sorry to hear it's been such a tough road. My thoughts are with you.
Gail
Gail
This is definitely sounding better. But you really didn't need this little adrenaline spike, did you? Please keep updating us, and know that I wish you the best. Success this time around!
I want to <B>thank both of you</B> and all the great people here on this forum.
I took many studies plus copies of all my previous biopsies, Blood work and Treatments, to my PCP also my former G.I. that treated me the first and second time.
With this added information and a fantastic Primary care Dr that I have, I am almost sure of an extension, it may not be another 24 weeks only 12 but any extension will give me time to work with a Hepatologist from the OHSU, then if needed he can get talk to my treating DR.
The Dr was going to bring into his reason for only 24 weeks my previous problem with Interferon induced depression. But I was lucky and was able to contact my Phyc. He said in his opinion I was doing great and would write a letter to Kaiser's Dr's giving his professional recommendation.
It is not final~~~ but I have one more shot for next Friday also my Treating Dr Ordered 12 months worth of Pegasys.<I>Why would he order 11 refills if he was only treating for 24 weeks?? another puzzling event.</I>
So hopefully he will forget to cancel the refills and then I will be able to pickup my next months supply next a week from Wednesday.
Thanks to all again.
TonyZ
Tony,
Have you approached your doc and pointed out your previous treatment history? If yes what did he say?
If not I think a carefully worded letter with some supporting documentation is a immediate course of action. If you get such a letter composed and go down in person and see his treatment nurse....they will see you if you show up! Present your letter to the nurse and confirm when she/he will pass this on to the doctor. Follow up and do not let it rest. If he refuses to modify your treatment ask him for a letter justifying his position in light of the research presented to him. You need to be careful in htis approach and only bring out one hammer at a time. You do not want to immediately put him on guard but should gently and firmly guide him through the most current research on treatment regimes for a patient with your ...errr... qualifications.
If you want some help on research or vetting a letter for content let us know. I have no doubt califia will be of great help in the vetting issue and I am more than willing to help with the research. Actually I mean I'll do either I just recognize califia's writing abilities over mine!
kindest regards,
BobK
Have you approached your doc and pointed out your previous treatment history? If yes what did he say?
If not I think a carefully worded letter with some supporting documentation is a immediate course of action. If you get such a letter composed and go down in person and see his treatment nurse....they will see you if you show up! Present your letter to the nurse and confirm when she/he will pass this on to the doctor. Follow up and do not let it rest. If he refuses to modify your treatment ask him for a letter justifying his position in light of the research presented to him. You need to be careful in htis approach and only bring out one hammer at a time. You do not want to immediately put him on guard but should gently and firmly guide him through the most current research on treatment regimes for a patient with your ...errr... qualifications.
If you want some help on research or vetting a letter for content let us know. I have no doubt califia will be of great help in the vetting issue and I am more than willing to help with the research. Actually I mean I'll do either I just recognize califia's writing abilities over mine!
kindest regards,
BobK
Please read my post under study results 11-17-04. I too am a 2b and relapsed. I too was told this would be a slow progression. The eye surgeon said she wouldn't let the eye trouble interfere with me doing tx again as long as we did a baseline before restarting and monitored the eyes through out tx. I have 11 months left of COBRA, and no job. I have wondered about trying Schering Plough's peg/riba combo, for 24-48 weeks since I did Pegasys last time. I've heard so much **** regarding this disease and tx. I've had docs tell me they don't think the Interferon tx cures it, that it just suppresses the virus for awhile. People with Hep C have told me if "they ignore it, it seems to get better". Dr Cecil wants me to wait 4 more years and has me scheduled for some new blood test in March 05 that is suppose to provide a liver assessment similar to a biopsy. (Anyone know anything about this, or the cost?) If I'm not going to do tx I see no sense to continue COBRA at $376. a month. I've also thought about just administering the 4 week supply of peg rebetron that my first gastro gave me in '02 without the riba to knock the viral load down. My thinking might me getting a little muddy on this. Any suggestions? Has anyone heard from "FATBOY" or know how he's doing? Peace!
excellent approach. If it gets to the point of asking this dr for the justifying letter, that alone might do the trick...fear of liability and litigation does have some benefits, I guess!
Tony, I think Bob's got a plan. (I'm also happy to communicate off-list, whatever works.)
One red flag for me was your doc's refusal to order a HeptaMax at the end of the 24 weeks. I have been promised that test at the end of my 48-week treatment by the treatment nurse, Louise Parker, who assists Dr. Eugene Chan in Walnut Creek, CA., and have no reason to mistrust this: she told me this was standard Kaiser operating procedure. Your doctor seems to believe in the bare minimum across the board. That's lousy medicine for an HMO that is known for excellent acute care (and crappy everything else).
Here there are various treating GI's distributed amongst the various centers. I got shabby care until I transferred to a larger medical center located in a more affluent community. That's the sorry truth. Response time & follow-through have improved 100%. Even so, I expect a fight to extend at the end of 48 weeks. I have been told by Nurse Parker that they have done it here for Geno 1's, but were not overwhelmed by the results. Even so, that indicates it has been done and can be done. Your doctor just has to be willing to take on the accountants.
Now, what is the essential documentation you need to present? Let's all put our heads together.
One red flag for me was your doc's refusal to order a HeptaMax at the end of the 24 weeks. I have been promised that test at the end of my 48-week treatment by the treatment nurse, Louise Parker, who assists Dr. Eugene Chan in Walnut Creek, CA., and have no reason to mistrust this: she told me this was standard Kaiser operating procedure. Your doctor seems to believe in the bare minimum across the board. That's lousy medicine for an HMO that is known for excellent acute care (and crappy everything else).
Here there are various treating GI's distributed amongst the various centers. I got shabby care until I transferred to a larger medical center located in a more affluent community. That's the sorry truth. Response time & follow-through have improved 100%. Even so, I expect a fight to extend at the end of 48 weeks. I have been told by Nurse Parker that they have done it here for Geno 1's, but were not overwhelmed by the results. Even so, that indicates it has been done and can be done. Your doctor just has to be willing to take on the accountants.
Now, what is the essential documentation you need to present? Let's all put our heads together.
There is only one Dr in charge of treatment in the Kaiser network area I am in the Portland/Vancouver area. He has set up the whole treatment program for this area and is the only Dr that treats.
I have a call in to my first GI. He is the one that told me I had to go to this Dr for TX. So I don't see him doing much. My PCP has no power over the Dr who, like I said is the director of the Hep-C program. He is a very learned Dr credential's and admired among the other GI's,,,, I think he is using his own meds. I have not given up, but things move very slow at Kaiser and I have 1 week of treatment left.
How does Kaiser work there hep-C treatment down there? Are there several Dr that treat or have the made a special unit for Hep-C tx ?
Thanks so much for you support and knowledge!!!!
PS.
I am lucky in one way. I have my insurance through my wifes work, there are several different Heath care policy's they can choose from. Next year at open enrollment we are switching to Aetna which is a Preferred Provider coverage, that way I can go up to the University of Oregon and get one off the Herpetologist that do the liver transplants at OHSU for a DR.
There are 3 of them in a Hepatitis clinic that are accepting patents.
TonyZ
I have a call in to my first GI. He is the one that told me I had to go to this Dr for TX. So I don't see him doing much. My PCP has no power over the Dr who, like I said is the director of the Hep-C program. He is a very learned Dr credential's and admired among the other GI's,,,, I think he is using his own meds. I have not given up, but things move very slow at Kaiser and I have 1 week of treatment left.
How does Kaiser work there hep-C treatment down there? Are there several Dr that treat or have the made a special unit for Hep-C tx ?
Thanks so much for you support and knowledge!!!!
PS.
I am lucky in one way. I have my insurance through my wifes work, there are several different Heath care policy's they can choose from. Next year at open enrollment we are switching to Aetna which is a Preferred Provider coverage, that way I can go up to the University of Oregon and get one off the Herpetologist that do the liver transplants at OHSU for a DR.
There are 3 of them in a Hepatitis clinic that are accepting patents.
TonyZ
Tony: Dr's just go by what they are presented. I have found that I know more than my PA, and actually bring all my printed studies in with me. Keep up the fight, I wish you the best.
Rev: Damn buddy. I can hardly believe it. Woke up this morning read your post, and my chest dropped. The fear we all have, is true. I for one, believed that you had this thing licked. Relaspe, ####!!
Though we have different political views, and love to argue, this is one thing I Pray you overcome. You are strong, and I know you won't stop the fight. Sh*t, we been going at it for months.
I just can't believe it. Damn!! Well as far as positive, you know you reversed some damage. Liver got a hell of a break from the HCV, so that is good. And you know all the new guidlines and extended standards, so you know what you gotta do. I wish you the best of luck, and know in my heart that you WILL overcome this dragon!! As crazy as you are, you got my support if you need it. Genuine hand extension, I wish you the best!! We will beat this freekin thing!!
Rev: Damn buddy. I can hardly believe it. Woke up this morning read your post, and my chest dropped. The fear we all have, is true. I for one, believed that you had this thing licked. Relaspe, ####!!
Though we have different political views, and love to argue, this is one thing I Pray you overcome. You are strong, and I know you won't stop the fight. Sh*t, we been going at it for months.
I just can't believe it. Damn!! Well as far as positive, you know you reversed some damage. Liver got a hell of a break from the HCV, so that is good. And you know all the new guidlines and extended standards, so you know what you gotta do. I wish you the best of luck, and know in my heart that you WILL overcome this dragon!! As crazy as you are, you got my support if you need it. Genuine hand extension, I wish you the best!! We will beat this freekin thing!!
Both of you are in my prayers today. I'm sorry that your struggle continues.
Susan
Susan
It's the day after T-Day, I just reread your post and am upset all over again. There but for fortune....and indeed it's been a real challenge for me negotiating decent liver care from Kaiser. I know there is a grievance protocol in place which you can get started by talking with Patient Services. But since time is of the essence, I would ask for an immediate medical review and stress the urgency of the situation. I do know that someone around here was denied a transplant by Kaiser and got them to reverse their decision. He's a lawyer, and just chipped away at every available front w/ great tenacity. The last thing you need to do right now, on top of treatment. But fight it, my brother. And if you need a loan of meds to tide you over, I'm sure a lot of us could chip in. I'm just concerned that there be no break in treatment. With Kaiser, or so I'm told, if the patient squawks loudly enough you get what you want--but they really make you work for it. And right now you could make a sound argument that you're being denied standard quality of care. Even to deny you the more sensitive PCR at the end of tx--what the....?
Again, if I can help w/ data collection on this end, or anything else, please do not hesitate to ask. Seriously.
p.s. Can you enlist the aid of your primary?
Again, if I can help w/ data collection on this end, or anything else, please do not hesitate to ask. Seriously.
p.s. Can you enlist the aid of your primary?
I'm sorry to hear that both of you have relapsed. In addition to expressing my concern about your response to Tx, I also wish to express my gratitude for your informative donations to this forum where so many others, including myself, have profited.
Again, I want to thank you both & wish you luck on your next treatment......
Good luck all,
Ben
Tony, I want to wish you the very best and express my outrage and dismay over the manner in which you were treated. I've gotten to the point where I trust only one person with my care (my surgeon who has followed me for over 4 years and emails and calls me any time I have a question) and even he I double check. In this day and age it's hard to get a good shoe shine so how in the world can we expect to get good care? I really feel fo you.
Scott, I really feel for you too. What hard news to take anytime and especially this time of year. I don't think there is anything I can say that will make you feel any better but I know you know I can relate to your situation. I can also relate to the second guessing that you are doing. So much of this stuff is a **** shoot and even though the tx has been around for a while I think that this treatment is still a hit and miss thing. I admire your positive attitude and that, I believe, will be the key to your success. Please keep us posted and stay strong. Good luck my friend. Mike
Scott, I really feel for you too. What hard news to take anytime and especially this time of year. I don't think there is anything I can say that will make you feel any better but I know you know I can relate to your situation. I can also relate to the second guessing that you are doing. So much of this stuff is a **** shoot and even though the tx has been around for a while I think that this treatment is still a hit and miss thing. I admire your positive attitude and that, I believe, will be the key to your success. Please keep us posted and stay strong. Good luck my friend. Mike
Ohhh noooo, omg I can't believe it. I am so very sorry however, the viris doesnt stand a chancewith you Rev...Tony....
Tony,,,I hate to hear that you are dealing with this now and pray things work out for you and you can continue longer on your tx....
Scott,,,I had a great holiday today and just got on to read the posts and wow....What a blow! I just knew you had it...I'm so sorry but know you are a fighter,,,,Next round,,,no reduction and then you get it!!
Scott,,,I had a great holiday today and just got on to read the posts and wow....What a blow! I just knew you had it...I'm so sorry but know you are a fighter,,,,Next round,,,no reduction and then you get it!!
Please don't give up. You guys have helped me a lot. I think for 1's 72 and longer is it, at full treatment and 48 for 2's for sure.
GOD BLESS Both of you.
I will keep you posted to my results in about a month or so after I get my tests on the 17th of Dec.
Bob L
GOD BLESS Both of you.
I will keep you posted to my results in about a month or so after I get my tests on the 17th of Dec.
Bob L
Tony: Nooooo! Not fair! We can't let this happen. You're not even getting the same care my friend and I -- both Kasier patients on tx --are getting in the Bay Area. You need to protest this big time, in writing, and demand a second opinion from inside Kaiser. If I can help in anyway, just say the word.
Scott: Oh man, I'm really sorry to hear this. Terrible news.
Scott: Oh man, I'm really sorry to hear this. Terrible news.
I have tears in my eyes(leftover riba/inf emotions?) I can't believe the ignorance and the politics with Kayser, I wish you the best Tony.
Scott, oh gosh, nooo! I feel like crying. after 88wks! DAMN virus!
Scott, oh gosh, nooo! I feel like crying. after 88wks! DAMN virus!
tonyZ,
I am so sorry for you that you are having such a hard time with your insurance company. I have been fighting my own company for nearly a year to get some bloodwork paid for--finally. I remember someone here saying it's the squeaky wheel that gets the oil. I hope everything works out for you and you beat this horrible bug. This is my first time on tx, so I cannot imagine how you feel. I hope and pray the best for you.
revenire,
I am so sorry to hear your news. What does anyone say when this happens? And you have tx for so long--which is why I began to think about extending tx. I hope and pray that whatever course you take works quickly for you. I mean that sincerely and will look forward to your posts on how you intend to attack this again. Good luck.
I spoke with my doc Tuesday. Of course I have new side effects (some kind of aching pains in my back and legs)and am not sure what to blame it on, my hcv meds or adjustment to the thyroid medication. Aha and the rash is back--frames my face nicely. Anyhow, I did ask him about extending tx and he really was surprised and not very receptive about it. Why, he said--cause I DON'T want to do this again!! I really can't remember all the reasons why he would not like to extend tx, but I have until 4/15 to change his mind. I know one thing tho, if I get pretty "irritable" they usually give in. Oh, he did tell me he was surprised I had gotten this far and had done this well, due to all the side effects I have suffered. He admitted he thought he would have had to stop tx for me (I don't think so). All the more reason to get it done the first time. Thanks for being an inspiration to me.
Docsgold
I am so sorry for you that you are having such a hard time with your insurance company. I have been fighting my own company for nearly a year to get some bloodwork paid for--finally. I remember someone here saying it's the squeaky wheel that gets the oil. I hope everything works out for you and you beat this horrible bug. This is my first time on tx, so I cannot imagine how you feel. I hope and pray the best for you.
revenire,
I am so sorry to hear your news. What does anyone say when this happens? And you have tx for so long--which is why I began to think about extending tx. I hope and pray that whatever course you take works quickly for you. I mean that sincerely and will look forward to your posts on how you intend to attack this again. Good luck.
I spoke with my doc Tuesday. Of course I have new side effects (some kind of aching pains in my back and legs)and am not sure what to blame it on, my hcv meds or adjustment to the thyroid medication. Aha and the rash is back--frames my face nicely. Anyhow, I did ask him about extending tx and he really was surprised and not very receptive about it. Why, he said--cause I DON'T want to do this again!! I really can't remember all the reasons why he would not like to extend tx, but I have until 4/15 to change his mind. I know one thing tho, if I get pretty "irritable" they usually give in. Oh, he did tell me he was surprised I had gotten this far and had done this well, due to all the side effects I have suffered. He admitted he thought he would have had to stop tx for me (I don't think so). All the more reason to get it done the first time. Thanks for being an inspiration to me.
Docsgold
I thought for sure you had beaten this dragon. Man I don't no what to say. I no the emotions you must be going through. <B>Wow.........</B>I'll check back with you later.
We are not going to let this virus win.......
God Bless
TonyZ
We are not going to let this virus win.......
God Bless
TonyZ
She said she would talk to the Dr and get back to me. 75 weeks later I received a phone call from the Tx nurse last week asking me to come in and see the Dr. This was only the second time I was allowed to see him, since becoming his patent 2 years ago. All of my question were answered via the tx nurse.
The appointment:
My wife and I went to the appointment 11-23-04. The Dr came in sat down and over 25 minutes explained that he treats each patient individually, then proceeded to site studies, etc as to why I only needed to do 24 weeks. After he finish and I started asking questions, to my amazement I realized that this Dr had not even looked at previous tx,bx, or blood work. He was treating me as a 2B per protocol 24 weeks needed only. Not as a relapser. To make this short, we did a PCR-RNA that checks down to, 50 IU/ML he would not do a heptamax or other tests that go down to <5 IU/Ml then told me if the test came back showing I still had the virus he would continue treating but if it was Non-Detectable TX would stop at 24 weeks. At 10 1/2 weeks my PCR show 112 IU/Ml. over a 4 log drop. I started at over 7,000,000 IU/ML.
This was the by far the longest post I have ever done. But I am really MAD and Frustrated.
Retreating a Rebetron relapser with 24 weeks of Pegasys give an average of a 30-40% Chance of obtaining SVR.
I am Praying that I am in that %
Please ask questions. I would not want anyone to have to go through this. Learn about your options.
Happy Thanksgiving,
TonyZ
PS, Some of this post probably sounds like rambling, but between the TX and my disposition at this time I am sure there is!!!!!!!!!!!
The appointment:
My wife and I went to the appointment 11-23-04. The Dr came in sat down and over 25 minutes explained that he treats each patient individually, then proceeded to site studies, etc as to why I only needed to do 24 weeks. After he finish and I started asking questions, to my amazement I realized that this Dr had not even looked at previous tx,bx, or blood work. He was treating me as a 2B per protocol 24 weeks needed only. Not as a relapser. To make this short, we did a PCR-RNA that checks down to, 50 IU/ML he would not do a heptamax or other tests that go down to <5 IU/Ml then told me if the test came back showing I still had the virus he would continue treating but if it was Non-Detectable TX would stop at 24 weeks. At 10 1/2 weeks my PCR show 112 IU/Ml. over a 4 log drop. I started at over 7,000,000 IU/ML.
This was the by far the longest post I have ever done. But I am really MAD and Frustrated.
Retreating a Rebetron relapser with 24 weeks of Pegasys give an average of a 30-40% Chance of obtaining SVR.
I am Praying that I am in that %
Please ask questions. I would not want anyone to have to go through this. Learn about your options.
Happy Thanksgiving,
TonyZ
PS, Some of this post probably sounds like rambling, but between the TX and my disposition at this time I am sure there is!!!!!!!!!!!
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