Try again?

[Cake45]

I was taken off treatment by my gastro after 4 weeks 7-2008. I am now going to be going to the ETSU Cancer Cer where they have  Hemo doctors is it worth another try? And will I need another liver biopsy(ouch)?

[Cake45]

My last biopsy was 2006 stage 2 fibrosis i haven't had tx since7-2008 for only 1 month didn't respond said the GI so now I am in the process of going to the ETSU cancer center in Tennessee where they have Oncologist and Hematologist.
The side effects were joint pain and nauasa being tired just normal side effects he offered no comfort and stopped my tx have not seen him since 7-2008. That is why I am going another avenue.
Thanks for your input I believe I am making the right choice of doctors this time

[fretboard]

Here's a couple of links that may be of some help.  Also txing this time with Alinia may help you, I still don't understand the part about bad sx's during 1 month, if they were with depression or messing with your world mentally then I can certainly relate to that.  Whatever it was take your time with a good Heptologist as I'm sure you know that you don't want to do it again after this.  The top link is actually on re-treating, both these links will give you some additional knowledge of HepC.  good luck

http://www.hcvadvocate.org/hcsp/articles/Keeffe-3.html

http://www.janis7hepc.com/

[nygirl7]

First off how long ago was your last biopsy?  What were the results of the last biopsy, did you have extensive damage?  Do you really NEED to treat or is it possible that you have time to wait until the new drugs are approved by the FDA?  Trials are good however they do have drawbacks at times (restrictions to any rescue meds you might need).

I would definitely find another doctor.  It's not fair to be descriminated against in any case but if you think it's affecting your course of treatment and you aren't secure with the doc SWITCH ASAP.

Although some did, most (a lot) of us didn't get this disease by being angels.  It's a sad fact of life that we now have to pay the consequences but that's life.

What severe side effects are you talking about? Fortunately if you do SOC (standard treatment) there are medications that can help you with some of them.  You need a good doctor and you'll probably have a better chance of success.

Not a hemo doc a GI (at least) and preferably a hep doc.  I had a GI, he didn't know as much as an expert but I learned enough in here that I could talk to him and he learned alot that he hadn't known before too.   Remember, it's nice to think our docs care and that they know everything but unfortunately a lot of them don't know nearly as much as the experienced people in here.

Ask all the questions you can in here and learn everything about the disease and your treatment possible - it WILL help your odds of successful treatment.

Good luck.

[granitekonig]

Look up a gastro in the phone book or online (use google maps). Make some calls. You might have been on too high a dosage the last time and that is why the side effects were so bad. They'll probably start you out like before but with a lower dosage....then hopefully you attain RVR (good response) by week 12 (since you are G1)

[Cake45]

I checked out the website but they only take those who have never been treated b4 any other suggestions?

[fretboard]

I wouldn't rush into txing using the exact same tx that you tried last time.  There's quite a few ppl on here who try again, but they mostly change something a little different each time they tx otherwise it could be insane.  Talk it over with a very competent HepC doctor who knows what he's doing, or a better idea may be to get into a clinical trial, for telaprevir or boceprevir.  They pay for eveything, except some rescue drugs.  Read around and get as educated as you can.  good luck

  Insanity: doing the same thing over and over again and expecting different results.

http://www.clinicaltrials.gov/ct2/results?term=BOCEPREVIR&recr=Open

[Cake45]

I lost the weight during the 10 months waiting to get insurance approval for meds during the month I was on tx i only lost 6lbs my current weight is 134 I worked very hard to lose the weight I drink tons of water and eat very health, I am not able to exercise due to another health problem. Tx was stopped b/c he said that i was not responding, my blood work whatever that means

[Cake45]

I haven't had a drink in over 3 years the cancer center is a whole different route for me these doctors deal with blood issues more so than the gastro I was seeing. I don'tknow what Boceprevir is but I will ask thanks for the heads up. I have had this for many years like 10 but only heard of treatment in 2006 I have other health problems so i try to watch the meds that i have to take for my other problems. Thank you so much I believe that I can learn alot here because i really do not know nothing about this other than it effects your blood and liver. I know nothing about test,test results just clueless

[fretboard]

Yes you can most definitely be discriminated against for having HepC, from some doctors.  I'm not clear on why you were taken off tx.  Did you lose 40lbs. during that month you were on tx and is that why you were taken off?  

[granitekonig]

Oh wow, complicated situation you've got there.

1. Go to the cancer center and DO NOT see the same Dr. as before.
2. Make sure you are taking the right dosage for your current weight
3. Of course try again, but look into any upcoming trials for Boceprevir first

Glad you aren't drinking anymore. I hope it's the truth and you stick with it.

[Cake45]

He said that I was not responding to treatment I have geno 1A, he said that my side effect were too bad in 2007 he told because I weighed 179 I lost 40 and now I only weigh 134. It took 10 months to get started on my meds due to insurance problems I believe that I was given the same dose as my old weight wonder if that was too high, I also feel he discriminated against me because of my past. So is it worth another shot to go to the cancer center where I can see a doctor more reliable in this field?

[Cake45]

He said that I was not responding to treatment I have genotype 1A, he said that my side effects were to bad but when I first saw him I weighed 179 this was in 2007 he said lose weight I did, 40lbs, but it took them 10 months to get my treatment started due to insurance complications I was given the same dose as if I still weighed 179. So I wonder if the dose was too high. Also I wonder if I should go through another biopsy and  try again? He made me feel discriminated against because I was in prison for FTA due to a drinking charge. I only saw him 2 times in one year once to get approval for treatment and the second to be taken off. I do not drink n/e more so should I go to the cancer center to try again?

[granitekonig]

Forget the biopsy. All that will tell you is how much damage there is. Do you really need to know? You need to treat again, regardless, so just do it. What genotype are you? Why did they take you off treatment after 4 weeks?

[pjhep80]

why did they take you off tx after only 4 wks???