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Posted 2/26/2012 3:53 AM (GMT 0)
hello everyone.  unfortunately i have been on HW for a couple of years now due to prostate cancer, but this is my first post on the hepatitis forum.  i will have my 18-month post treatment PSA read in less than two weeks.  if my PSA is stable i am inclined to start interferon/ribovarin maybe in july.

i was diagnosed with hep c when i found out that my PSA was high but i've known for years that i most likely had hep c since i was an IV user and i had been hospitalized with hep B about 38 years ago.  i have been clean for 22 years (almost). a recent blood test showed mildly elevated liver enzymes.  after my recent physical my GP says i should avoid a biopsy and do interferon treatments ASAP.

i recently began seeing a hepatologist.  he's confirmed hep C and says i don't have hep B.   he says my hep C is active but his best guess after palpitating my liver is there is no cirrhosis and i am healthy.  he says that since i have the active virus there's a 50/50 chance of needing treatment.

he layed out four options for me without making a recommendation.  the two that i heard were:

1)  get a liver biopsy and regardless of the outcome start interferon treatments.

2)  do nothing (exactly what i've been doing for years)

now, my doctor said he does not recommend a biopsy to determine whether i need treatment because it might provide false hope.  he wants to do a biopsy as part of the interferon treatment but he said he would treat me even if i opted not to have the biopsy.  he does not recommend monitoring the disease through blood tests, ultra sound or biopsies.  he said to either ignore the hep c or treat it, and he laid out reasons to ignore the disease -- e.g., if i were suicidal.

my doctor also said he will only do genotyping if i or the insurance company requests it.  he said he only does one-year treatment because he believes the outcome is better and in the past insurance companies would not pay for the full year if the patient had a "favorable" genotype.  he said i am most likely genotype one and that's the way he would treat me.

my hepatologist is on the liver transplant board and he had a fellowship to study liver disease, and i trust him.  i received an aggressive combination treatment for prostate cancer and i went through hell...but i have recovered and feel very good.  mentally and physically i think i could endure a year of interferon treatment.

as an ex-hype in recovery  i have had friends who have died of liver cancer or liver failure and many more friends who have been through interferon treatments.  i'd say the majority completed treatment  and have cleared the virus.  it also seems that the ones who were healthy going into treatment were more likely to complete treatment.

in short i would hate to "give up" a year or so of good health but i have a shot at clearing the virus once and for all.  i know some of you monitor your hepatitis with the thought of treating it only if you have to.  i'm not sure that would work for me since i already have the anxiety of monitoring my psa for prostate cancer.

so, i'm not sure if i want the biopsy or the third drug but i am strongly leaning toward treatment this year, which is also my wife's wish.

what do you think?

thanks in advance!

ed

 

Post Edited (F8) : 2/25/2012 9:12:56 PM (GMT-7)

Posted 2/26/2012 4:21 AM (GMT 0)
FA, welcome to the Hepatitis forum. To treat or not right now is something you will have to decide on your own. Did your doctor mention the 24-week 3-drug treatment? That is the latest available hep C treatment. It is showing great success in those with type 1a and 1b (70-90% clearance.) I recently had a liver transplant (cirrhosis, hep C, liver cancer for the 2nd time) and still have treatment ahead of me. I wish now that I had done it sooner.

I think I would get a second opinion from another hepatologist. Some of what he said is odd, IMO. For example, anyone with active hep C should have treatment; otherwise, it will progress to cirrhosis, liver cancer, end-stage liver disease, and eventually death. Normally, an antidepressant is started prior to treatment. Treatment is rough, but after what you've been through (congrats on beating prostate cancer!) it shows you have fortitude and persistence. From what you've said about your enzymes being mildly elevated, you probably don't need to rush into treatment tomorrow. But if I were you, I'd do it before you find yourself with a decompensated liver.

Hugs,
Connie
Posted 2/26/2012 4:33 AM (GMT 0)
I suggest a liver biopsy to begin with. Then you (and your doctor) will have a much better idea of where things are at. A biopsy is the only definitive way to determine if you have cirrhosis. Palpitating your liver, an ultrasound, CT scan, or an MRI will not give proof of scarring. Go for the 3 part treatment if you're going to go for a zero viral load.
Posted 2/26/2012 4:37 AM (GMT 0)
For example, anyone with active hep C should have treatment; otherwise, it will progress to cirrhosis, liver cancer, end-stage liver disease, and eventually death.

well he didn't actually say that cool .  he said there were two groups of folks with hep c.  those with the active virus and those with the inactive virus.  he said many with the latter aren't even aware of contracting of hep c because they never were ill.

because i have "mildly elevated" blood tests he says i clearly have the active virus.  he said half of the people with the active virus are at risk for the progression you mentioned so there's a 50/50 chance that i will require treatment at some point.  he's says a biopsy can tell him if i need treatment now but can't tell him i will never need treatment. 

since i know that i contracted the disease somewhere between 22 and 38 years ago i may be at a critical point with the disease.

thank you for your comments!  i am a reluctant warrior but from now on i will monitor my health and do what i must to stay healthy. 

ed

 

Posted 2/26/2012 4:45 AM (GMT 0)
David -- a biopsy cannot tell me that i won't treatment in the future, and really we have already made the assumption that i probably do not need treatment now.

i have mixed feelings about a biopsy if i decide to start treatment, and i did have a biopsy about 27 years ago after having a relapse of hepatitis (drug induced i'm sure) while in custody.  in truth i am scared of the biopsy and this is from a guy who recently had a prostate biopsy as well as radioactive seeds planted in his prostate gland.  also, if i'm going to be treated anyway i don't see the importance of a biopsy.

ed

 

Post Edited (F8) : 2/25/2012 9:50:33 PM (GMT-7)

Posted 2/26/2012 4:48 AM (GMT 0)
David -- the three-part treatment may not be covered by my insurance and my doctor says that some of his colleagues are ambivalent about the third drug because it can make the side effects much worse.  my wife (a biologist) thinks the added risk of the third drug versus the possible benefit isn't worth it.  and that's not a financial decision because we can get the money.

ed

 

Posted 2/26/2012 4:57 AM (GMT 0)
David -- i looked through your recent posts and see you were treated as a stage one and then had other problems.  were your other problems a result of the interferon treatments?

ed

Posted 2/26/2012 5:04 AM (GMT 0)
Hi Ed,

Most who have joined this discussion are Hep C folks. My partner, Mike, has Hep C. He is post transplant with recurring Hep C (that lives on, sorry to say). He had ESLD and liver cancer, so the transplant saved his life.

I agree with what you said, about likely date of infection, and likely onset of serious potential illness. Mike was infected in 1969 or 1970 and got really really ill during 2009 and 2010.

His big mistake was not avoiding ALL alcohol until he became gravely ill. That is a huge key in this.

Mike did 24 weeks of treatment in 2003 and did not clear the virus. His current viral load genotype 1a is MUCH higher then when he took the treatment and failed. He will need treatment again at some point. His doctors are not going to do a biopsy at this point as his enzymes are great...the best in YEARS. The new liver is doing well. He will be reluctant about treatment as he had bad time with the side effects. He was about as ill with the treatment as he was waiting for his transplant...his white and red counts were so very low, his platelets were horrible. He had to have injections for white and red support (Neupogen and Procrit) which were not covered by insurance totally and were hugely expensive in order to keep taking the Interferon and Ribavarin. They eventually stopped before they did him in. So, he's not too excited to go there again. But he will when they tell him it is time! Or I will encourage him to support a protocol that is recommended.

The decision if and when to treat is individual for each patient, each center, each doctor.

I agree with advice David gave when Mike was starting through this process a long time ago -- find a doctor you believe in and go through the journey with faith in the outcome. Something like that.

We are working with the transplant team of Hepatologists and Surgeons at Miller School of Medicine at U Miami. They have been so great!

Good luck to you ED, you have been through the mill with the cancer, and now this!

Carol from Florida
Posted 2/26/2012 5:17 AM (GMT 0)
mamalama -- thank you.  one reason i avoided the doctor for so many years is because i knew i would need to address the hepatitis at some point.  imagine my surprise when i was told i had a healthy case of prostate cancer cool .

the timeline of when i contracted the disease has really got my attention.  there are two things that scare me more than the interferon treatments.  they are prostate cancer and liver cancer.  i've done everything possible to treat the first and i really hope that my PSA holds so i can treat the second.

i have friends who monitor their hepatitis but my doctor does not believe in that.  he believes in either treat or ignore it.  and there are plenty of folks with my risk who are not good candidates for treatment.  he said the national treatment compliance rate in the U.S. is like 60-70%.  but his personal rate is 100%.  he said he wanted me us (my wife and i) to walk away from the consultation without making a decision and come back in four months.

i like the doctor and i trust him, and he's highly regarded around here.

ed

 

Posted 2/26/2012 5:32 AM (GMT 0)
F8, you are active and so am I. I contracted hep C in '68 or '69 and never knew I had it until late '92. I started feeling very fatigued around '91--in a different way than just being tired--but there was no specific test then for hep C. Since you contracted hep C so long ago, I'm wondering if you experience fatigue? If so, that's evidence that the virus is attacking your liver. Left untreated, the fatigue gets worse over time...to the point where the smallest things take a lot of effort. Everyone I've ever known or heard of with active hep C goes on to develop a variety of liver issues without treatment. For example, in '93 when I had a biopsy, there was no cirrhosis. In '07, there was. Like I said, it progresses. I've never read of a statistic saying only 50% of active hep C patients develop other problems. Many don't know they have hep C until it has advanced to ESLD. There are those who test positive for hep C, but their immune systems knocked it out in the acute phase. They will always test positive but can also be infected with a different genotype of hep C. I have the antibody for B, but my immune system knocked that one out. It sounds like yours did, as well. I'm sure I contracted it in the same era as the C.

After I was diagnosed with HCV in '93, I tried 2 rounds of interferon (the only treatment available at the time.) It meant injections 3 x a week. My white count dropped so low that I was taken off treatment both times. Now they have drugs to help with low white and red blood cells.

I had a biopsy the beginning of Jan. so Mayo could ascertain whether my high liver enzymes were caused by the hep C or if it was rejection of my new liver. (It was hep C.) I was really nervous about having the biopsy, but it actually wasn't bad. They numbed me up really good, including deep in the tissue, so I didn't feel the actual biopsy at all. I know you don't want a biopsy right now, or even treatment, but just bear in mind what I said.

I also concur with David that a diagnosis of cirrhosis cannot be made by palpating the liver. There's a new option, Fibroscan, but not many places are using it yet.

Hugs,
Connie
Posted 2/26/2012 5:47 AM (GMT 0)
  I've never read of a statistic saying only 50% of active hep C patients develop other problems.

it's a pretty common number.  you usually hear something like 20% of the people with hep c will develop problems.  it's the same number (rounded off) but excludes the 50% who have the inactive disease.

on my initial visit the doctor palpitated my liver and checked my skin for artifacts that suggest liver problems and gave me his "best guess" when i asked him what he thought.  he said he did not detect any hardening or enlargement of the liver but also said the only way to know for sure was to have a liver biopsy.

i am pretty health for an old guy with cancer  cool  .  i exercise 6-8 hours a week and always have since i have been clean and even before during periods of incarceration, which were long and frequent  cool .  so i would say i do not suffer from fatigue and generally feel very good.

from age 19 to 35 (my using years) i had 5-6 relapses of hepatitis that caused jaundice and dark urine and flu-like illness.  i wonder if maybe i never had hep B?  anyhow in the past 22 "clean" years i've had absolutely no problems with my liver.  hopefully i bought myself more time.

anyhow reading your history and some of the others really saddens and scares me.  i have a friend who was offered a liver out of turn because the guy at the top of the list didn't want it because the liver had the hep C virus.  my friend took it knowing he'd have to fight the virus again.

i have another friend who was on the long list for a transplant but he cleared the virus after the second attempt and now no longer is on the transplant list.  he went through hell though.

oh, i wanted to add that i will take an anti-depressant before treatment.  before hormonal therapy (chemical castration) for prostate cancer i took celexa.  i was hoping to find something this time that doesn't have sexual side effects like maybe wellbutrin, which another buddy took before he started interferon treatments.  if i commit to treatment i'll do whatever necessary to get through it.

ed

Post Edited (F8) : 2/25/2012 11:21:19 PM (GMT-7)

Posted 2/26/2012 2:45 PM (GMT 0)
Your hepatologist has a number of ideas I've never heard other hepatologists say. The 3 part therapy has almost double the cure rate of just interferon/ribavirin, so why would anyone try the lesser treatment when there's a better one. As far as side effects; they're going to happen with both, so why not go with the better chance of clearing the virus.
Posted 2/26/2012 5:15 PM (GMT 0)
David -- where have i said my hepatologist was against the 3-part treatment? he'll do either the 2-part or the 3-part based on my wishes and in some cases the insurance company.  all i said was some of his peers are skeptical about the benefits of the third drug which is perfectly normal since it is a new treatment.  my hepatologist does not believe the third drug "almost" doubles the cure rate.  he believes 50% cure rate with two drugs and maybe 70% with three drugs.

the man was laying out the info for me to make a decision.

the decision to do the two drug or three drug treatment will be mine to make.  we're leaning toward two-drug because of the added side effects -- i want to get through treatment -- versus the benefits.  one thing i do have control over is my treatment path and i could very well decide on the three drug cocktail but i need to research it more.

what else did he say that you at odds with.  you said there were a number of things you hadn't heard before.  could you list them for me?

ed

Post Edited (F8) : 2/26/2012 10:20:45 AM (GMT-7)

Posted 2/26/2012 7:57 PM (GMT 0)
"he said he only does one-year treatment because he believes the outcome is better and in the past insurance companies would not pay for the full year if the patient had a "favorable" genotype. he said i am most likely genotype one and that's the way he would treat me." That says your doc is talking about the 2 part treatment, not 3. He didn't even determine your genotype? You can't treat some genotypes with the 3 part therapy.

"my doctor said he does not recommend a biopsy to determine whether i need treatment because it might provide false hope. he wants to do a biopsy as part of the interferon treatment but he said he would treat me even if i opted not to have the biopsy. he does not recommend monitoring the disease through blood tests, ultra sound or biopsies. he said to either ignore the hep c or treat it, and he laid out reasons to ignore the disease -- e.g., if i were suicidal. Are you suicidal? If not, your hepatologist seems to ignore tests in favor of his gut feelings. I disagree with almost everything you say that he says. The more you and he knows, the better the disease can be treated. My treatment has been at Massachusetts General Hospital (judged to be a top US hospital) and I trust my doctors. They have never said to ignore the Hep C and wait and see. I have bloodwork monthly so they can monitor cancer markers, viral levels and other kidney and liver results. I've had numerous ultrasounds, CT scans and MRIs to determine the extent of my Hep C. No guessing involved. If you don't monitor the disease, how can you make an informed decision as to whether to treat it, or how to? Obviously you trust your hepatologist, or you wouldn't defend them. That's good for you, but his hands off attitude doesn't impress me.
Posted 2/26/2012 8:18 PM (GMT 0)
Me, either, David. I tried to ignore it and look what that got me: Cirrhosis, liver cancer (twice!) and a transplant.

However, I think Ed's mind is made up. Which makes me wonder why he even asked what we think.

Hugs,
Connie
Posted 2/26/2012 8:48 PM (GMT 0)
However, I think Ed's mind is made up. Which makes me wonder why he even asked what we think.

i did say in the original post that i would probably get treated if my PSA number is stable and i do have strong opinions on the subject.  are you discouraging me from asking questions that i have strong opinions about?  if you are, it's not going to work and don't feel like you have to answer any of my questions cool .

you think i'm better off holding off on a decision till my liver starts to fail or my cancer returns? 

i have hep C and it's active and i have finally recovered from my cancer treatment so if my PSA numbers are stable i see this as an opportunity to clear the disease.

anyone here wish they were treated sooner? 

ed

Posted 2/26/2012 9:02 PM (GMT 0)
David -- you are nitpicking what i've said just for the point of argument.  i get that you think i should do the 3-drug cocktail.  if my insurance company doesn't approve the third drug will you loan me the $40-50K cost cool ?

my doctor believes in treating active hepatisis C, the earlier the better.  he believes in 48-week treatment.  he was out front about that.  i have a couple very close friends who monitor their disease.  i don't want to go that route unless i have no choice.  i have one friend who went from stage one to stage three PDQ and he was unable to complete his treatment, though he's still clear a year later.

people who are depressed or suicidal are poor candidates for pre-emptive interferon treatment.

from the people who responded to this thread it sounds like you all either opted for early treatment or received treatment later than was optimal.  is this a correct assumption?

thanks for your time.

ed

 

Post Edited (F8) : 2/26/2012 2:09:39 PM (GMT-7)

Posted 2/26/2012 9:17 PM (GMT 0)
David -- your situation is much different than mine -- you've had a transplant.  i have trhe active virus but am not sick.  it stands to reason your doctors are closely monitoring you liver.  you should probably point that out up front.

ed

 

Posted 2/26/2012 9:43 PM (GMT 0)
here's a fairly recent article on the new, third drug.  in case you haven't read it.

http://medicalxpress.com/news/2012-02-benefits-hepatitis-treatment-outweigh-patients.html

ed

 

Posted 2/26/2012 10:30 PM (GMT 0)
The monitoring I was speaking of began 8 years before my transplant, and it continued afterward. I too had the disease for 40 years before it became a problem, but when it did, things went to hell quickly. If you're going to suffer through the treatment, why not go for the gold-3 part one. The worst part of the therapy is interferon, so you'll deal with that, no matter which one you do. Incivek is available from the drug company if you're unable to pay. You wanted input, but have disputed what has been suggested to you. Good luck with your treatment.
Posted 2/26/2012 11:17 PM (GMT 0)
David -- what have i disputed?  you're the one getting hung up on the small stuff.  like i said i am leaning toward early treatment with interferon and ribovarin.  why do you have such a problem with that? 

you have not made one argument for the three-drug treatment other than you think that's what is should do and embellishing the numbers quite a bit.  the 90% figure you threw out most likely does not apply to me.  my doctor knows that.  i know that and i think you probably know it too.

i am not sick.  nevertheless, i could change my mind on which treatment especially if the insurance company approves the treatment. that's a small detail right now.  i'm just not there yet. 

when i was diagnosed with prostate cancer i opted for the most rigorous combination treatment because my case warranted it.  we exhausted every curative remedy available and it was a rough course of treatment.  i don't have a problem with doing what i have to do.

i'll let you know how it goes.  until then....thanks for your time.

ed

 

 

Posted 2/27/2012 1:58 AM (GMT 0)
I never said 90%. The figures I've seen say that the 2 part therapy works about 40% of the time and the 3 part therapy almost 80%.

"i am not sick." What do you call having Hep C?

"when i was diagnosed with prostate cancer i opted for the most rigorous combination treatment because my case warranted it." You just made my case for the 3 part treatment.

Hep C can kill you every bit as dead as cancer. Actually, you're twice as likely to develop cancer in your liver with Hep C. 10 - 14,000 Hep C patients die every year from the effects of the virus.
Posted 2/27/2012 6:57 PM (GMT 0)
Hello F8.  Been following this thread had had to jump in.   Both Connie and David know what they are talking bout having had to deal with Hep C to the point of transplant and beyond.   They are giving you their expert opinions based on their experience.....it is your choice to take their advice or not...Don't hang up on the technicalities of their not agreeing with your doctors.....just think about what they are saying.

I was a former caregiver to my husband who I might add died of Liver Cancer after his system knocked out the Hep C.   My fear for you is that you are currently a cancer survivor.......but with the Hep C's history of causing liver cancer, I believe that your odds of getting it at some point is better than most.   I wouldn't sit back and do nothing while it is distroying your liver no matter how slowly.  

By the way congrats on beating the prostate cancer..........Hope you beat this Hep C too..........thoughts and prayers......... 

Posted 2/28/2012 8:10 AM (GMT 0)
I believe that your odds of getting it at some point is better than most. I wouldn't sit back and do nothing while it is distroying your liver no matter how slowly.  

thanks pink grandma.  i also believe the same thing and i don't have any intention of delaying treatment nor do i wish to "monitor" my disease for years as others on this thread have opted to do. 

i have my 18-month post prostate cancer treatment PSA test coming up next week.  if my number is stable -- my cancer is in remission -- i plan to get treated with at least interferon and ribovarin in july.  i'm healthy now but we all know that can change quickly and i'm not waiting around to test my timing abilities on when to get treated.

i really thought there would be more encouragement for getting early treatment.

i'll be back soon to either say i've pulled the plug on treatment because my cancer appears to be back or else to say i've got the wheels rolling to begin interferon treatment after my summer vacation.  either way i have a battle ahead of me and i could use the support even if you feel like i should be doing it your way cool .

ed

 

Posted 2/28/2012 8:26 AM (GMT 0)
"i am not sick." What do you call having Hep C?

 

your turning my own words against me again David because of some control trip you have regarding my treatment. like i said, i'm leaning toward two drugs but the third drug is not off the table.  i'll make that decvision later.

now let's talk about you.   you monitored your disease for many years and then you ended up getting a transplant.  what happened?  could things have worked out better if you got treated sooner.  do you have to do treatment again?  are they making you wait because of medical reasons or are you waiting for the right time?

ed

 

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