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Hepatitis C Living with it, inside prison and out in the world.

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  #1  
Old 04-13-2014, 05:00 PM
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Default Solvadi - Gilead Sciences Cure

http://io9.com/new-hepatitis-c-cure-...sts-1562754674

Cure rates of 90-96% (depending on duration), just cost prohibitive, especially in the US ($84K for full treatment). But, it supposedly is ok for those with cirrhosis.

It will be interesting to see what the insurance companies do about it.
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Old 04-16-2014, 08:26 AM
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It will be interesting if the Feds offer it to inmates who need it. But at $84,000 for cost of treatment in the US, it'll be a tough 'pill' for them to swallow.
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Old 04-16-2014, 01:52 PM
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It will be interesting if the Feds offer it to inmates who need it. But at $84,000 for cost of treatment in the US, it'll be a tough 'pill' for them to swallow.
has to become the standard of care for prisons to put it on their formulary. At $84K, it's unlikely to be a part of the standard formulary anytime soon.
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Old 09-09-2014, 09:24 AM
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OMG! Y'all, I am sooooooo happy- my mom got cleared for the 12 week protocol with this promising and pricy medicine.

The idea of my mom being healthier and being around for a few more years is.....there are no words

I will keep a little log here about side effects, bloodwork, and such.
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Old 09-09-2014, 09:47 AM
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Great news!
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Old 09-19-2014, 11:38 AM
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We began Mom's treatment on Wednesday. The small dose of interferon (a weekly part of the regimen) caused some nausea and major fatigue, but we think this will be manageable.
We have no idea which of the 3 drugs in the protocol is involved but her appetite is radically *better*- this is a huge blessing.

We are hoping that the lethargy will only be really pronounced for the couple of days following the weekly interferon injection but if she ends up sleeping 'til New Years, I will still think this is worth it.

I'll keep y'all posted.
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Old 09-19-2014, 03:07 PM
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Good luck!
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Old 09-19-2014, 05:47 PM
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Thanks for the update. Can they recommend how to eat to deal with the nausea? Is it better empty stomach or full? Milk products?

Wonderful to see somebody eat with a healthy appetite when it's been absent for a while. Such a wonderful relief.
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Old 09-20-2014, 09:01 AM
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Mom has always leaned towards vegetarianism, anyway, and now she's avoiding strongly peppery things and fresh onions (cooked ones seem to be fine, but fresh ones set off massive spleen pain)- She uses goat milk, mostly, but has no trouble with cheeses and yogurt made from cow's milk.
Those Belvita breakfast crisps have proven a godsend- tasty, good nutrient content and highly digestible.
Grazing is better than full "meals" .
Doesn't seem to matter if the meds are taken with food or not.
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Old 09-20-2014, 11:42 AM
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Grazing is always good eating - did it for many years as a chef, never sat down for an actual meal.

THC does wonders for nausea, even though it might not be entirely legal. Some doctors do prescribe it (my mother go it years ago for use during her chemo treatments).
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Old 09-20-2014, 03:07 PM
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I don't know the legal status of medical THC in Oregon, but across the border in WA, medical, as well as recreational use by adults, are both legal now.

So far the federal government is allowing the WA voters to decide too. When medical THC was legalized here a number of years ago, the then US Attorney General dispatched most of the DEA here to arrest the evildoers, but times they are a changing, at least until the next presidential election anyway.
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Old 09-20-2014, 03:39 PM
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I can't advocate the use of THC, even in states where it's legal simply because it's still against federal law. But, if there's a substance that decreases nausea, and nausea is a big issue, then it's something to talk about with your doc. There are alternative ways to take such things, so explore your options as well.

Grazing does a body good. When my dad was having a hard time (liver cancer), I got him on energy goo used in distance athletics. There's a brand that uses organic honey in their energy gels, with or without caffeine, and doing one of those gives you an easy 100+ calories of energy in a simple mouthful. It's all honey based, so it's not like the gross pseudo frosting of other gels. Endurance athletics involves the need for easy energy - so energy that doesn't require a great deal of time or energy to digest. Anyway, that was the theory. Seemed to work a bit. Here's the honey company: http://www.honeystinger.com/, but there are a lot of other energy gel companies out there, and you can stop by your local bicycle store or running store and get a few to try.
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Old 09-20-2014, 03:41 PM
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Oh, since we're talking a compromised liver, stay away from stuff that's high protein. Some protein is necessary, but drinks like Ensure and Boost are waaaayyy too much protein for a compromised liver. Mom started Dad on Ensure to try to get him calories without looking at the protein content. Protein takes a lot of liver action to digest. Took him off that, and he found he felt better and had more energy.
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Old 09-20-2014, 04:30 PM
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Medical THC has been available for years upon years. My mother died many years ago- 1998 - in New York, and had the scrip well before then.
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Old 09-20-2014, 06:19 PM
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Medical THC has been available for years upon years. My mother died many years ago- 1998 - in New York, and had the scrip well before then.
yes, many states have legalized THC in a lot of different forms, either medicinally, or medicinally and casually. It's still against federal law meaning that while the states won't bust you, there's a possibility that the feds will (not a high probability). Since I've sworn oaths to uphold the constitution and laws both on the federal and state levels, I cannot advocate that a person break federal law by obtaining a scrip for THC to deal with nausea. I can say that I would see my doctor about nausea, look at the options that my doctor presents me with, and choose the one that's best for me (or a loved one), and in a form that's best for me (or my loved one). There's a bill in Congress that would legalize at least the medical use of marijuana, but it hasn't passed yet, and until that time, all I can recommend is following your doctor's advice about nausea treatments without advocating the use of THC.

Don't mean to be confusing; just agree that nobody should suffer needlessly, that there are chemicals out there that will help a person deal with nausea, and that getting advice from your healthcare advisor about those substances and chemicals can do a lot to mitigate nausea.

(for reference, see http://www.ncsl.org/research/health/...na-laws.aspx#2)

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Old 09-21-2014, 03:02 AM
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We began Mom's treatment on Wednesday. The small dose of interferon (a weekly part of the regimen) caused some nausea and major fatigue, but we think this will be manageable.
We have no idea which of the 3 drugs in the protocol is involved but her appetite is radically *better*- this is a huge blessing.

We are hoping that the lethargy will only be really pronounced for the couple of days following the weekly interferon injection but if she ends up sleeping 'til New Years, I will still think this is worth it.

I'll keep y'all posted.
I will keep yall in my prayers for her healing.
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Old 09-21-2014, 06:43 AM
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The US DOJ and WA's have been negotiating, but I agree, until federal law changes all it will require for another "task force", like the last one, is a different US Attorney General, or a change of mind by the current one. The ability of the federal government to bring criminal charges for pretty much any behavior, anywhere, is an onerous, and often abused power.

By the way, the Western WA US Attorney who was on a personal crusade to prosecute as many state firearms crimes as possible in the federal courts, because of the harsher sentences there, just resigned. We'll see what agenda the next one will be pushing.
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Old 09-21-2014, 08:59 AM
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The Medical Marijuana issue is long settled here in Oregon...and my mother and I were both part of the campaign to pass 215 in California.

And while I always appreciate a good discussion on the subject of marijuana laws, it is NOT the topic of this thread so, please, let's get back to Hep C treatment.
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Old 09-21-2014, 10:07 AM
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I gather your mother's stomach was not all that happy before treatment began, but treatment is both helping her by increasing appetite, but aggravating the nausea? How are you both managing that part of it? Nausea is insidious.
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Old 09-21-2014, 10:13 AM
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The nausea was only an issue for about 12 hours following the interferon injection... a frustration, certainly, but not a huge obstacle.
We know now that we must not schedule any activities on Thursday (the shot is happening every Wednesday night at bedtime, so she can try to sleep through the worst of it.)and we will, no doubt, be learning more management tricks as we go....

And we're doing pretty will with old fashioned home care remedies- mild foods, candied ginger and some specialized baked goods.
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Old 09-21-2014, 12:45 PM
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Ah, love the ginger! Used to give it to a horse who had trailering problems, and I've used it myself when needed. It also makes a terrific tea, and with a little orange or apple juice it's superb!
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Old 09-25-2014, 08:27 AM
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One full week in, the fatigue is still pretty debilitating and the "flu-like symptoms" we were warned of as a side effect are moderate but definitely happening (sporadic fever, muscle aches and the aforementioned fatigue)

On the plus side, her appetite remains better than it was right before treatment began, not great but much better and, amazingly, her spleen has shrunk already and she's reporting "much less" pain in her abdomen.

I have seen no jaundice since we began and the redness in her palms (the result of excess iron in her system) is less pronounced.

1 week down, 11 to go....I am hoping for a very, very happy New Year!
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Old 09-25-2014, 10:04 AM
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Grit. It's the only way we get through, and your mom has it. She taught it to you.
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Old 10-13-2014, 10:20 AM
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1/3 of the way through the treatment course-
She feels, in general, like store bought crap (And I mean off-brand, discount crap, not the premium stuff) but her spirits are reasonably good and, to our great joy, there's been no significant hair loss.
Her spleen has returned to near normal size and gives her far less pain and she reports much less heartburn/sour stomach.
Most of the side effects we were warned about have shown up but mostly mild to moderate and mostly transitory and manageable. (It helps that she's one of the toughest, most stubborn broads ever born)

The fatigue is a whole 'nother story-it is staggering, so much so that I'm going to be talking to her primary care physician about beginning some sort of physical therapy soon for fear of atrophy and tendon problems emerging from her being so sedentary for so long.

Overall, I feel like this is going well but I would have to say it's a bad idea for someone without a really good support system to try to do this alone.
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Old 10-13-2014, 06:13 PM
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thanks for the update. What do you think would be the toughest part for somebody who didn't have a support system?

Glad to see you know exactly where you got your resiliency
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