Wednesday, August 8, 2012

My Hep C Treatment: A Mad Dash for 2nd Opinions

I promise this image will make sense
when you get to "the kicker" below.
The story of my Hepatitis C treatment continues...

A Mad Dash for a Second Opinions

So here I was in week 20 of my treatment, discovering my hepatology team made a medical mistake and realizing that I needed a second opinion...or two!

My first thought was How crazy is this?

So let's start with a re-cap. I told you last time that Hepatitis C treatment is an all or nothing proposition. Once you start you have to keep going until you are done.

 Along the way, you get side-effects, lots of side-effects, many similar to the side-effects people get while undergoing cancer treatment. You can read about my side-effects here and here.

But unlike cancer treatments, where you get a little time to recover between chemotherapy sessions, Hepatitis C treatment is relentless. You take your medications every day, every week, every month for up to 48 weeks with no break, no respite and absolutely no stopping.

This treatment has real potential to wear you down and grind you into the pavement.

So was I in any shape to start looking for a new doctor at week 20? Absolutely not!  But I dug deep and did it anyway because my gut said I needed to...

Santa Monica-UCLA Medical Center: Part One

So it's week 20 and I thought myself a bit lucky when I found another hepatology in UCLA Health System at the Santa Monica-UCLA Medical Center who had almost immediately availability. And I went to the appointment with fingers-crossed that his separation from the UCLA Westwood Medical Center meant I might be able to get a true, independent second opinion.

Turns out, I was seeing the new Chief of Hepatology who had only been hired a few months prior. It seems that no one knew he was there yet.

 We talked and identified two issues: 1) my lack of a week 4 viral load and that fact that my week 3 viral load was detectable at less then 43 IU/ml and 2) whether my three weeks of prior treatment in 2007 meant I should have automatically received 48 weeks of treatment from the start.

By the end of the appointment, I did not have any answers to my questions.  Instead he admitted that he was not an expert in Hepatitis C treatment. He did, however, have several colleagues involved in Hepatitis C research that he could consult on my behalf. He also told me that he had trained my current hepatologist and would call and speak to my doctor.

To get all this done, he requested that I come back in a week for his answers.

I left with an uneasy feeling about this doctor. A little voice told me that his past connection to my current doctor meant things could definitely go either way: surprisingly well or horribly wrong.

Part Two

A week later, week 21, and I am back again seeing the Chief of Hepatology. I've already been to see my current hepatologist on Tuesday and he absolutely refused to extend my treatment past 24 weeks.

So on this Thursday the Chief tells me he has spoken with two experts who both agreed that 24 weeks of treatment is enough.  Only he doesn't tell me who these experts are and I wonder if he conveyed my medical information to them accurately.

Next he tells me that Vertex, the maker of Incivek, is currently conducting clinical trials to prove that just 12 weeks of triple treatment is enough for someone like me.  That's all well and good, but I am not part of that clinical trial, am I?

Then he talks about Gilead, another Hepatitis C drug maker, and their wonder drug that will be approved in 2 years. He gushes that this latest generation of antiviral drug will make Hepatitis C treatment more successful and easier: so easy that primary care doctors, not hepatologists, will be the ones to prescribe and manage it.  I guess this is supposed to be my back-up plan...and I wonder if he owns stock in the Gilead.

I don't really want to hear about clinical trials and better drugs. I want my current treatment to be the very best it can be and get rid of my Hep C NOW. Even so, I do try to put my skepticism aside and believe him.

But Then Comes the Kicker...

After the discussion, he asks to do a physical exam. I am laying on my back on the examination table waiting for an abdominal exam. My husband and another doctor are in the room with me too.

As he is standing right over me, looking down on me, he says, "It seems you are a patient that wants to direct her medical care and tell her doctors what to do. This is why medical doctors often don't get very good treatment because they are trying to micro-manage their own medical care."

He meant it as an insult, my friends, and I got a glimpse of how he really felt about me being my own best patient advocate.

I walk out discounting this doctor's advice and appalled at his lack of professionalism. I was so furious I tweeted his words out to my followers on Twitter while on the drive home.  My tweets inspired this blog post by a fellow blogger at Fightin' the Fibro.

Another Week, Another Second Opinion

It's now week 22 and I go to get a second second opinion with a hepatologist at Cedars-Sinai.

Right off the bat I am impressed when this doctor takes his time with me. He even compliments me on having all my records together and being knowledgable and informed about my treatment and Hepatitis C. He even takes the time to explain aspects of my treatment to me that the UCLA hepatology team never did.

That said, he did ultimately come to the same conclusion: that my treatment length should be 24 weeks. However he explained to me in detail how he arrived at his decision which really helped me to accept it. Let me share some of those details with you:

Yes, he did think the timing of the viral loads was important in determining treatment length. But of course I don't have a week 4 viral load and there is nothing to be done about that now. He is assuming I would have been undetectable somewhere between week 4 and week 7.

He went on to say that the anemia I've had since week 2 does predicts a better treatment response. Plus the way he talked about how he would have managed my treatment-related anemia differently actually made me wish he had been the doctor treating me this time!

Overall, he does think I have responded really well to treatment and he is very confident that the treatment I did receive has a very good chance of working.

Most importantly, he told me that my interferon-related mild retinopathy is a non-issue, especially since it had almost completely resolved at my last eye exam. That news alone was worth going to this consultation. What a relief to know he does not think that, during the remainder of my treatment, I am going to wake up blind one day.

His main reason for wanting me to take the risk of stopping at 24 weeks is the promise of newer antivirals that will have significantly fewer side-effects. In his mind, if my Hep C does come back, retreating in 5 years when these drugs are approved by the FDA would be so much easier on me than extending my current treatment to 48 weeks now.

He did make it clear he won't take over my care now, but is willing to have me as his patient if I don't clear the virus in 6 months.

This hepatologist is a risk-taker. And I get it; my missing week 4 viral load does now add an extra element of uncertainty to my current Hep C treatment. I admit I didn't leave this appointment 100% happy about his advice. But ultimately I came see that I need to accept the things I can not change, make the best of a bad situation and just move on...

So after discussing his advice at length with Robert (who has been with me at all my Hep C treatment appointments) and sleeping on his advice, I ultimately decided to follow it.

P.S. If you are so inclined, you can listen to my thoughts on my second opinion over at Cedars-Sinai by clicking here: Selena's Update on Her Hep C Treatment by SelenaMKI

That Brings Me to Today...

It is now week 24 and I am scheduled to end my Hepatitis C treatment tomorrow, Thursday, August 9th. I take my last two hot pink "girl power" ribavirin pills at 5 PM.

Unfortunately I won't know for sure if this treatment has been succesful until 6 months after I complete it, which will be in February 2013. The doctor at Cedars said a good predictor of success will be the viral load I will have drawn 3 months post treatment, which will be in November.

I also filed a formal grievance against my UCLA hepatologist two weeks ago with the UCLA Patient Affairs Department.

So where does that leave my post-treatment follow-up?  I don't have a new hepatologist and I certainly don't want the stress of going back to see the old one.  So I am headed back to my primary care doctor at UCLA on August 20th to discuss this further with her.

I've kept my primary care doctor in the loop with email updates on my treatment over the past six months.  I have a very good rapport with her and I know she can order my labs, examine my belly and manage my remaining side-effects easily and more effectively than the UCLA hepatology team did. Yes, it might mean extra work for her, but she has already been much more involved in my Hep C treatment than I ever imagined she would have been.

Hopefully my primary care doctor can save the day and successfully guide me through my post-treatment recovery time.  If not, never fear, I do have a Plan B. After all, us sick chicks need to be prepared for all possibilities, right?

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