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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!
Showing posts with label Interferon. Show all posts
Showing posts with label Interferon. Show all posts

Friday, March 11, 2016

Some Things Considered

I am an outlier,

But I am happy.

Treatment to cure is every person with Hep C's goal. When things get closer to the end it can consume us to find the keys to the locked exit doors. Even in my early 20s I gave up hope when Int/Riba failed, I grasped at straws and took the treatment again with a higher dosage.

That grasping, failing, created my first RAV, I had a q80k polymorphism. Failing a treatment is not simply continuing to have HCV but it also bears the risk of creating mutations, RAVs. 
So after failing Int/Rib/Incivek, Sovaldi/Olysio, Harvoni... I now have three mutations, RAVs.

I am an outlier, but one or two RAVs is common among experienced patients.

Zepatier, the drug i've been waiting for had a contradiction I was worried about. While previously I was unsure my Child-Pugh score; I confirmed that it is only A. Which means it shouldn't be as hard to get access to the meds.
Daklinza/Sovaldi/Olysio/Riba is another contender.

(to make things even more complicated, the existence of RAVs from a previous treatment does not indicate that the treatment will or will not necessarily fail)

Well....fuck.  There isn't enough longitudinal data for my situation on these meds to make the best decision. Why? Because breakthrough medications often lack the studies their non-breakthrough partners have at date of FDA approval.  Breakthrough therapies are not about the results, they're about maximizing the amount of time the patent is most profitable.

Zepatier will undoubtedly change the conversation about Hep C meds due to its lower price point and high efficacy in smaller groups as well as across Genotype 1 and 4.  I fear that this low price point will drive a "consumer's" choice in treatment. 

(Insurance agencies, Healthcare groups and Pharma companies make the real choice between medications before you even see em... which means 1/3 of the people deciding  give a shit about the patient. Fucking Trident has more support from leading dentists.) 

There are many combinations of Hep C meds for many different cases, each one with different efficacies. (Sovaldi ranges from 84-96% depending on subtype.)

The best drug/therapy to treat should be set by relative efficacy, not by price.
That being said, my condition is stable, I don't seem to be getting worse, nor am I getting better. If I keep up the healthy changes I've been making I may be able to stay where I am for a few years yet.

The key now is choosing the best treatment, which means waiting for more data. Thankfully the EASL (aka the International Liver Conference) is coming up next month, so we should have more information in the coming months.

In the meantime later this month I'll be making a trip to Portland and Seattle. Making stops in San Francisco, and Sacramento.
If you're along the route, ping me! 

Thursday, May 28, 2015

Knock down five stand up six.

Some introspection I've come into whilst failing treatments.

When it comes to goals, I see a lot of inspirational quotes and lots of motivational goal oriented articles, blogs, ad nasuem. But what I've come to realize is that it's important to understand what level of impact your actions have on the goal you're trying to achieve. While a positive attitude is great and can mean the world in a situation as dire as treatment, it's become clear to me a few things....

One of the first things you should understand if you're going to start a Hep C treatment is that it's not a goal. How hard you work, whatever you do has very little impact on the success or failure of the treatment. There are a few things that can help a treatment: proper cleaning and handling of blood/hygiene, a nutritionally balanced diet, exercise, and a good support network.
But besides the blood, it's not much different than everyday precautions.

The treatment is largely out of your control. It may sound disappointing, but it's important. Because if it fails, this attitude can help you move forward. I've failed five different Hep C(HCV) treatments, it's hard not to take it personal, but it's necessary.

Remember that how you acquired HCV was out of your control. Certainly there are high-risk behaviors, and age groups but that's analysis, but it has nothing to do with how you got it. The lack of control as to how you got it, is the same lack of control regarding it's purge.

What matters is that there are factors about HCV you can control.

You can learn more about the virus, and educate those around you.
You can find information regarding treatment, and which one is best for you.
You can reach out to those around you to/for support, physical or online.
You can encourage others to get tested, to understand your abilities, and to understand prevention techniques.

This treatment isn't a goal, it's an obstacle, just like the virus itself.

The only goals you need regarding treatment, are the one you make beyond it.

Thursday, April 9, 2015

Numbers and one last bottle.


This is the last bottle of pills of Harvoni I will take.

In 28 days i will be finished with my fifth (and hopefully final treatment.)

Over the course of my life i have spent One year, six months, two weeks, and three days undergoing a treatment for Hepatitis C(HCV) I will have spent 23 days in the hospital, for HCV related issues that either nearly killed me, or as of a result of complications, nearly killed me. I will have spent a total of 14 hours undergoing imaging, 8 hours under the knife (surgery), and had over 200 visits to the doc.

In 28 days, i will be finished with this treatment. In four weeks, i will be able to check the second 0 off my list, and all that's left is SVR 12 in August. With three 0s in a row i will be cured.

The side effects of Harvoni were nothing in comparison the my previous treatments. The ease of a oral once per day pill makes this treatment something i hope is readied for use for children with HCV soon. Presently the first treatment (Peg-Interferon+Ribavirin) i went on, is the one available to children save special cases.

With only 28 days left, This will probably be the longest month I've had in years.


In celebration, tomorrow I will be doing a vlog, as it's been a while since I've done one.