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another doctor, another hard decision to make

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Posted 2/18/2012 1:54 PM (GMT -5)
i met with my hepatologist yesterday.  he's the Dr. who did my recent colonoscopy and tests to confirm that i have hepatitis C. 

in a nutshell my doctor is recommending a liver biopsy and a one-year course of treatment of interferon and one or two other drugs.  the two drug treatment has a 50% cure rate.  the triple blockade includes a third drug that was approved a few month ago which he has never prescribed and boosts the cure rate to 60-70%.  the two-drug cocktail makes hormonal therapy seem like a trip to disneyland.  the triple blockade is even tougher.  the third drug is very expensive ($40-50k for a year) and may not be covered by my insurance.  interferon is self-injected into the stomach once a week.

i have been clean 22 years.  so the math tells me i most likely contracted hep C in a 16-year window ending 22 years ago, which means that if i am in the 50% group that has the active virus the damage is occuring now.  the doctor says i am most likely in the active virus group because of my mildly elevated blood tests.

there's another halving that occurs for people with the hep C virus.  in the group that has the active virus 50% will probably never need treatment.  the other 50% are at risk for cirrhosis and liver cancer.  the doctor said there is no way to know which group i am in and to him it really doesn't matter.

he explained my options and what i heard was either commit to one year-treatment or ignore the disease and hope it never becomes a problem. he said there are legitimate reasons for not treating hep c.  certain medical conditions preclude treatment, if you are suicidal or have grave emotional issues you should not be treated.  if you can't miss work treatment may not be for you.  etc.  etc.

he said the compliance rate in the u.s. is between 60-70%.  in other words 30-40% who begin treatment do not finish because either they physically can't or they give up because it's too tough. he said in europe the compliance rate is like 90%.   he said his personal compliance rate is 100%.

he said he would not do a biopsy to determine whether or not i need treatment NOW because a favorable biopsy could give me false hope, and the condition of the liver could go from favorable to life threatening in a very short period of time in some cases.  also he said he would not do geno-typing because most likely i have the most resistant strain of hep C and even if i didn't he  does not believe in the six-month course of treatment.  also, he said if i tested for the geno-type that was easier to treat my insurance company may not pay for the one-year treatment.

my wife wants me to be treated and i am strongly leaning toward being treated too.  i went through hell with PC treatment but i feel "normal" again. but i also felt "normal" when i was diagnosed with a high volume of gleason 7 prostate cancer.  i opted for the combination treatment for PCa was because my doctors felt like it gave me the best chance to beat the disease and i was strong enough to handle it.

and now i am healthy enough to handle treatment again but what a sacrifice.  and what if my PSA starts rising?  my wife says she belives the cancer is gone and now it's time to do everything we can to make the hepatitis be gone too.

anyhow i have another PSA test in three weeks.  after i get those results i have another tough decision to make.

ed

 

Posted 2/18/2012 2:11 PM (GMT -5)
Ed,

Everyone has their own values on these kinds of tough decisions. I am hope I am not being too presumptious here. But, I think you should definitely consider being treated. It is really hard to wrap one's head around another big treatment after having recovered from PCa and are feeling so well. Maybe ponder it a few days before you decide. It seems like you are in really great physical shape and can pull through the treatment.

Posted 2/18/2012 2:16 PM (GMT -5)
Ed, sorry to hear this news. The decision on all treatments depends on the individual and the circumstances in that individuals life. Best of luck with the decision process.

Do keep us posted.

Cajun Jeff
Posted 2/18/2012 4:40 PM (GMT -5)
Ed, I hope for God's guiding hand to assist in your decision making...
Posted 2/18/2012 4:51 PM (GMT -5)
Tough decisions abound....how about another opinion on such a huge decision????
Posted 2/18/2012 5:01 PM (GMT -5)
Hi Ed.........just wanted to add this. I have a friend who opted for the 1-year Interferon treatment (don't know whether he had the double or triple blockade that your MD is suggesting). He too had contracted Hep -C some years ago in his wild and crazy years. He was/is a single dad raising two kids, and felt that he should undertake it even with all the risks. His experience, and I saw him at various points all the way through, was that he got flu-like symptoms for a couple of days after his shot, and recovered in time to take the next one---------52 times in a row. He would take the shot on a Friday afternoon, feel like crap for the weekend, and then feel well enough to go back to work. He also is a runner, and continued exercising through the treatment. It worked for him, and he's glad he did it. Don't know how the above SE's compare with what your MD outlined, but I thought it was worth relaying to you---------best wishes on your decision.

Arnie

Posted 2/18/2012 7:21 PM (GMT -5)
Ed,

My wife had a serious bout of Hep C about 10 years ago. Her's was not drug related. She had Hep B 3-4 times growing up starting at age 6. For the Hep C, she was on one of the earlier triple-coctails, at that time 2 of the 3 meds were experimental.
I learned how to give the shots, and as you described, I had to inject her in the stomach weekly for one of the meds. I actually got pretty good at it after awhile. She was given about a 25% success rate. She has down well during the 10 years since, no relapse, but she will always show up positive for it in her blood tests. We are hoping it never comes back to haunt her.

In my opinion, despite all you have gone through yourself with PC, I would go for the treatment, before the Hep C has a chance to do any long term damage.

David in SC
Posted 2/18/2012 11:34 PM (GMT -5)
thanks everyone.  i knew i had hep C and that's one reason i avoided doctors for so long. ironic, eh cool ?

the fact that i am even considering treatment is a positive.  i feel blessed to be healthy and looking at the long term.  but believe me i am starting to sweat my next PSA test.  my wife says the cancer is gone.  now we move on and deal with the hepatitis.

many of my friends have hep C:  some have died from the virus; others have been treated and have not cleared the disease; one guy quit after his first shot and now does no testing because it makes him feel like he is dying; and quite a few have cleared the disease.  i've watched the folks go through treatment and usually it's pretty ugly.  i have one friend who has three weeks left on interferon -- three more shots.  he hasn't worked in months.  his wife recently left him and he complains and rants most of the time when i see him at our support meeting.  but he is success story in terms of getting through treatment without relapse or felony arrest. and he has inspired me.

i have several friends that won't do treatment but they will do liver biopsies every few years.  my doctor is against that approach because of the false sense of security the biopsies provide and the rapidity of progression in some cases.

so i even find some satisfaction in that he feels i am a good candidate for treatment.  he has a 100% compliance rate to protect cool .

i want to be in a position where i have a tough decision to make because that means my next PSA is either stable or lower.  believe me that's the biggest fear i have right now!

ed


 

 

Posted 2/18/2012 11:51 PM (GMT -5)
David -- i was diagnosed with hep b almost 40 years ago when i was in the army.  i got deathly ill and was hospitalized.  on my recent blood test i had the antibody for hep b but no virus.  so i either never had hep b or else i cleared it.  there's a possibility i guess that i contracted hep c all those years ago which was before they even knew hep c existed.

i'm pretty sure i was vaccinated for hep b before we went to africa a few years ago so that could explain the antibody.  all i know is i did get very sick when i was 18 and i had several relapses while i was still using.  i really am lucky to be alive cool !

how did your wife tolerate the treatrment?  was she very ill?  did she have to take a break from work?

ed

 

Posted 2/19/2012 12:05 AM (GMT -5)
Ed,

When my wife was a gir of 6, when she was dx. with Hep B the first time, she ended up missing the entire first grade of school. Her parents had several rent houses in Dallas, and due to the general ignorance of the disease in the late 50's, she was kept in quarantine mostly alone in one of the rent houses. Her foodwas was bought to her of course, and her needs were met, but she was basically in full qurantine.

When she had it return forthe 3rd time at age 16, it nearly took her life.

As far as the Hep C episode in her life. Her dx. was considered very serious, and the prognosis didnt look good. As far the the cocktail she was put on, one of the drugs, started with the letter "R", can't remember, was very experimental and considered dangerous. She had to sign a lot of release paper's at the time.

What ever drug was in the shot I administered, seem to effect her the most. She did work, but it was a severe struggle for her at the time, let's see, she would have been in her mid-40s when dx. It caused severe fatigue, messed with her eye sight and hearing, and often gave her troublesome emotional swings. There was some pain associated after giving her the shots, for a couple of days, and yeah, I just remembered, the entire year of treatment, she said that she felt like she was experiencing moderate to severe flu symptons.

I had to really physically assit her a lot during that time, as she required a lot of rest when she was at home. I understand they have improved the mix of meds in our day and time, and that some of the expected side effects aren't suppose to be as severe for most patients.

She did well, has been clear of direct symptons for 9 full years now, but it will show up in her blood tests for the rest of her life. Plus, due to her past Hep issues, she will remain at high risk for recurrance. But so far, she has held her own pretty good considering all things.

I know it will be a tough decision for you make, having been on the caretaker side of that decision, I know you will give a lot of serious thought and consideration to this decision.

I can only wish you the best as you think through this, and if you do get treatments, can only hope you can tough through as you have had to do with you own PC battle.

David in SC
Posted 2/19/2012 12:53 AM (GMT -5)
David -- your wife went through hell with hepatitis but it sounds like her SEs with interferon and ribovarin (?) were tolerable.  i just took a trip to the HW hepatitis forum and man it was depressing.  i really am a wimp when it comes to procedures and treatment but i know how to talk a good one cool !

ed

 

Posted 2/19/2012 9:21 AM (GMT -5)
Ed,

I have a business client and a co-worker that have been treated for C in the last 8 years.

My client was about 60 at the time (2003-04) and she was treated with interferon and a few other drugs in a clinical trial. Though I don't know what the other drugs were, her side of the trial became the standard of treatment today. While she was on treatment, side effects were similar to chemo but less severe. She recovered completely and contiues to do well.

My co-worker is just early 30s and apparantly got it with a transfusion following his birth. He just completed the 48 week routine. He did his injections on Thursday and took Friday off from work. For the most part when I saw him M-Th he was fine, but he said weekends were like having the mild flue. He said his biggest negative was giving up his friday evening out and a few brews. He has gotten over that and also stopped smoking. He was part of a trial at Emory to determine the best time period of treatment. His docs are confident that he will be 75% probability of no recurrance.
Posted 2/19/2012 3:45 PM (GMT -5)
JNF -- thanks for the positive stories.  i know many success stories from folks who have been treated, as well as a few horror stories.  a buddy of mine was on the liver transplant list for years.  he did a year of interferon and he didn't respond.  eventually he did another year and he has cleared the virus and is no longer on the transplant list.  he went through hell but he cleared the virus.

ed

 

Posted 2/19/2012 9:41 PM (GMT -5)
Ed,

You did notice in my account of my wife, the story is like 10 years old. Like many medical treatments and procedures, much can change in 10 years. What was risky and experimental for her 10 years ago, has been greatly improved and more effective.

Again, this is a case, where if it were me, I would be getting the treatments, because the ravages of Hep C once it's out of control is too horrible to think about, and the damage wouldl be permament or even fatal if left to go unchecked.

She still gets checked (her blood from time to time), and thank goodness, while its still in her blood, its not showing any signing of becoming active. Let's just say, no one in their right mind would take a blood donation or tranfussion from her. We are careful, i.e. with razors, which we never share, because it could still be transmitted via blood to me.

David
Posted 2/19/2012 10:33 PM (GMT -5)
David -- the interferon treatments were rougher in the past for sure.  if my PSA holds i almost certainly will get treated.  my health is good and i have that in my favor.  you know there's a chance that i can beat cancer and hep c.  my mind tells me "no way" but i know there's a chance cool .

ed

Posted 2/20/2012 12:02 AM (GMT -5)
You certainly wouldn't want a damaged liver and a weakened imune system to complicate your PC journey for sure.
Posted 2/20/2012 2:25 AM (GMT -5)
David -- my wife doesn't like me talking like this but if my next PSA isn't favorable i may have to roll the dice on the liver ... but i'm getting way ahead of myself here.  think positive cool .

ed

 

Posted 2/20/2012 11:18 AM (GMT -5)
ed,

i believe in putting all my problems/issues into seperate compartments.

your pc is one compartment, hep c would be another. each needs to be dealt with seperately in its own way. even if your next psa number is not going the way you want, i would keep it still a seperate issue on the other subject.

david
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