Aa
2 Doctors, 2 Opinions - Your Opinions Please
As most of you know, I’ve been through 4 failed treatments. Within this week I saw Dr. Robert Gish, the hepatologist, and Dr. Frank Faris, the Gastroenterologist, regarding waiting or treating.
I’ve been denied both Telepravir and Bocepravir because of failed results. Dr. Gish wants me to wait and see him in one year. Dr. Faris wants me to treat now, even if it’s the double-dosing of Pegasys with Riba.
Here’s the decision part I need your opinions on: Even if I eventually get on the VX-950 trial, I may get a placebo. However, if I don’t, the success rate for hard to clear victims such as myself is 70% or better.
The double-dosing of Pegasys with 1200mg Riba is 15-20%. That doctor would treat and if I didn’t become UND in 12 weeks, he would stop treatment.
Dr. Gish eats, sleeps and lives liver problems. The Gastro is a Jack Of All Trades, Master Of None. However, he sees an urgency now that I’m at the beginning stages of Cirrhosis.
I spoke to another member on this board who knows Dr. Gish very well and has cleared. She suggests I listen to him and wait. This is a tough decision for me at this point.
On the 16th, I will begin the banding of my Esophageal Verices. This will entail 3-6 procedures. Dr. Gish examined me and said I look well and little has changed in the past year as far as blood work and progression.
For those knowledgeable:
My MELD is 7 and has remained so for years. My ALT is 85, my AST is 74, the lowest they’ve been in years. My Bilirubin is 0.3. Glucose-Fasting is 102. Platelet Count 84. Viral Load 2,900,000. Alpha-Fetoprotein 26.0
So there it is. Your opinions are highly appreciated. Wait or treat?
Magnum
I’ve been denied both Telepravir and Bocepravir because of failed results. Dr. Gish wants me to wait and see him in one year. Dr. Faris wants me to treat now, even if it’s the double-dosing of Pegasys with Riba.
Here’s the decision part I need your opinions on: Even if I eventually get on the VX-950 trial, I may get a placebo. However, if I don’t, the success rate for hard to clear victims such as myself is 70% or better.
The double-dosing of Pegasys with 1200mg Riba is 15-20%. That doctor would treat and if I didn’t become UND in 12 weeks, he would stop treatment.
Dr. Gish eats, sleeps and lives liver problems. The Gastro is a Jack Of All Trades, Master Of None. However, he sees an urgency now that I’m at the beginning stages of Cirrhosis.
I spoke to another member on this board who knows Dr. Gish very well and has cleared. She suggests I listen to him and wait. This is a tough decision for me at this point.
On the 16th, I will begin the banding of my Esophageal Verices. This will entail 3-6 procedures. Dr. Gish examined me and said I look well and little has changed in the past year as far as blood work and progression.
For those knowledgeable:
My MELD is 7 and has remained so for years. My ALT is 85, my AST is 74, the lowest they’ve been in years. My Bilirubin is 0.3. Glucose-Fasting is 102. Platelet Count 84. Viral Load 2,900,000. Alpha-Fetoprotein 26.0
So there it is. Your opinions are highly appreciated. Wait or treat?
Magnum
I figured when she told me "all of my patients clear" , she meant the ones that last the duration of 12 weeks with svr.... well duh... .. talk about spin.
cw - I am exercising now on a treadmill that they have set up for the teachers where I teach.. even has cable tv! very cool.
my glucose is still high in the morning, 110-120, even thought the metformin has been doubled and I am exercising... maybe it takes awhile?
HI apache! yeah, i remember all that.
I am just hoping and praying that IR is the reason I failed.
As far my doctor goes... of course I am getting a new one... and am seriously thinking of trying to talk my pcp into treating me, as he is quite open to all options. I think he would probably do anything I asked as long as I can back it up with studies , etc.
It is just too hard to run around trying to find a gastro or hepa that is willing to work a little outside of the box... many seem to be content with just following standard protocol.. I guess they reluctant due to lawsuits.
My liver doc does want me to come back in , in april for an ultrasound... probably worthless, although I have had an ultrasound tech that an ultrasound will show a fatty liver as well as liver cancer.
I am going to try an wait on the polymerase/protease inhibitor combos for round 2.
I just don't have much faith in the infergen, or a retreatment with riba/inf. any opinons?
thanks,
bandman
cw - I am exercising now on a treadmill that they have set up for the teachers where I teach.. even has cable tv! very cool.
my glucose is still high in the morning, 110-120, even thought the metformin has been doubled and I am exercising... maybe it takes awhile?
HI apache! yeah, i remember all that.
I am just hoping and praying that IR is the reason I failed.
As far my doctor goes... of course I am getting a new one... and am seriously thinking of trying to talk my pcp into treating me, as he is quite open to all options. I think he would probably do anything I asked as long as I can back it up with studies , etc.
It is just too hard to run around trying to find a gastro or hepa that is willing to work a little outside of the box... many seem to be content with just following standard protocol.. I guess they reluctant due to lawsuits.
My liver doc does want me to come back in , in april for an ultrasound... probably worthless, although I have had an ultrasound tech that an ultrasound will show a fatty liver as well as liver cancer.
I am going to try an wait on the polymerase/protease inhibitor combos for round 2.
I just don't have much faith in the infergen, or a retreatment with riba/inf. any opinons?
thanks,
bandman
I'm waiting for a good new trial even if it's a few years. As you know this disease can be a slow mover. Magnum you've been through double dosing before I wouldn't go there again. Just watch you're diet and health and get your mri's and sonograms done.Have you had an endoscopy? good luck giddyup
"The doc that did my first round tx, doubted me greatly when I told her i thought I was IR."
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We doubted her greatly too....when she said all her patients cleared ; )
"When I told her i had all the symptoms of IR, she said like what?? I listed them and she said, well yes, but you do not have the two most important ones.... your are not obese and you are not diabetic!"
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Family history is the most important and she forgot to ask you. I swear, your docs did all the wrong things. The hepatologist couldn't wait to get rid of you when you failed. They refused to test you for IR. When they finally agreed, they tested only the blood sugar and refused to do the insulin test. And after you insisted multiple times, they did a 2 hr GTT and misread the results! LOL
"thanks cs and cw for all your help , helping me figure this out! "
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Wed guided but you did the hard work. You should be very proud of yourself. You taught a doctor about IR and that will help his other patients.
Now that you'll have more time off you need to start getting more active. It will help lower the HOMA.
Co
-----------------
We doubted her greatly too....when she said all her patients cleared ; )
"When I told her i had all the symptoms of IR, she said like what?? I listed them and she said, well yes, but you do not have the two most important ones.... your are not obese and you are not diabetic!"
------------------
Family history is the most important and she forgot to ask you. I swear, your docs did all the wrong things. The hepatologist couldn't wait to get rid of you when you failed. They refused to test you for IR. When they finally agreed, they tested only the blood sugar and refused to do the insulin test. And after you insisted multiple times, they did a 2 hr GTT and misread the results! LOL
"thanks cs and cw for all your help , helping me figure this out! "
----------------
Wed guided but you did the hard work. You should be very proud of yourself. You taught a doctor about IR and that will help his other patients.
Now that you'll have more time off you need to start getting more active. It will help lower the HOMA.
Co
Hi Bandman,
It's amazing how much trouble I had persuading my primary care doc to test my fasting insulin. Because I'm slim like you and my fasting glucose is normal, she really dug her heels in and said there was no need. She finally agreed after I spun a very elaborate story, invoking a confused assortment of facts and white lies. She'd never heard of HOMA and I did a pretty awful job of explaining it to her. Wish Co had been with me.
I wonder when IR testing will be a routine part of the screening process, pre-tx.
It's amazing how much trouble I had persuading my primary care doc to test my fasting insulin. Because I'm slim like you and my fasting glucose is normal, she really dug her heels in and said there was no need. She finally agreed after I spun a very elaborate story, invoking a confused assortment of facts and white lies. She'd never heard of HOMA and I did a pretty awful job of explaining it to her. Wish Co had been with me.
I wonder when IR testing will be a routine part of the screening process, pre-tx.
If more Dr tried on a pair of CoWriters's IR colored glasses, there might be less non-responders and more SVR.
-----------------------------------------
No might be about it.
CS
-----------------------------------------
No might be about it.
CS
bandman54 and all
Hey bandman, how ya been ?
I remember last fall when you were treating, and on the other forum I suggested you get tested for IR after your 4wk pcr showed poor response.
The resistance you got from your DR, about IR, and how they convinced you back then that you did not have IR (without a homa2 test ?) I felt back then was a mistake and tried to tell ya. Hopefully your Dr wont make that IR mistake again. This probably happens to many people. Some Drs seem to have a resistance to insulin resistance.
Am glad to know that Now, you might have found your missing link of the non-response to inf...IR . You might have failed your first tx, but now with your IR under control, think you have a much better chance of SVR if you try again. With or with out the new PI drugs, you might have a RVR now.
If more Dr tried on a pair of CoWriters's IR colored glasses, there might be less non-responders and more SVR.
apache
Hey bandman, how ya been ?
I remember last fall when you were treating, and on the other forum I suggested you get tested for IR after your 4wk pcr showed poor response.
The resistance you got from your DR, about IR, and how they convinced you back then that you did not have IR (without a homa2 test ?) I felt back then was a mistake and tried to tell ya. Hopefully your Dr wont make that IR mistake again. This probably happens to many people. Some Drs seem to have a resistance to insulin resistance.
Am glad to know that Now, you might have found your missing link of the non-response to inf...IR . You might have failed your first tx, but now with your IR under control, think you have a much better chance of SVR if you try again. With or with out the new PI drugs, you might have a RVR now.
If more Dr tried on a pair of CoWriters's IR colored glasses, there might be less non-responders and more SVR.
apache
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