Sofosbuvir and Ledipasvir Treatment #2

MERRY CHRISTMAS....Best Gift You Could Have Gotten! Now LoL I gotta find me one!!

Getting excited and anxious...Sovaldi...a winner in our book...we pray!

Happy New Year Everyone,

I think the 2nd drug is Daclatasvir.

At lunch looking up stuff.

More later.

C

Mama,
OK...so this is a let down for both of you after being ready to treat the Hep C post transplant today. But, the silver lining is there is a great cure now, even at a ridiculous cost. Glad you are warmer. I know you must be exhausted. Thanks for the car speedy udates *wink*......you know we are watching for your next move. Big Hugs, Mama.

ML,

As you have said in the past, things happen for a reason. I'm sure that it will all work out. Seems there is more good news than bad, unless I'm missing something.

Mike seems like a resilient kinda guy, hope he takes all this in stride. I wish him, and you, the best of the best for this coming year. And here's hoping that by 2015 we will have another cured HW'er!

Hugs to you both,

hi ML,
I was so happy to read about Mike's trial with Gilead. What an opportunity! Special thoughts and prayers to you both!
Coincidentally I was in to see my hep doctor yesterday. (The local one, not the ones at UNC) She has applied to Gilead for me to be accepted. I have never been treated before for the Hep c. It was my understanding the drugs will be in the pharmacies this month and no more trials. Did I misunderstand? I will order directly from the pharmacy but is controlled by my doctor.
This is post RFA for HCC. My first scan post op was excellent. I am scheduled for a new MRI Friday and if it still looks good, I will be able to have the drugs. My AFP is creeping up, but I realize that on it's own doesn't mean much. Even with the cancer it was only in the 20's.
I will be thinking of you two tomorrow and following your posts carefully as I need as much info as I can gather.
Warmly,
Zoarie

MamaLama, it sounds confusing (he's in, he's out), but no cirrhosis is great news. It may be a blessing that you'll have no interferon with the upcoming trial. Hope you get some rest before the next big battle.

Emma ... I am not a technical person but interferon can be nasty. It's similar to chemo. I've been on it alone, and combined with ribavirin ... three times. Various trials for a cure, one for reduced inflammation. I was even on something called Interleukin which they stopped because it causes Lou Gherig's disease ... too bad because I felt awesome on it.

Each time I was on Interferon it was hell. I felt like a wounded animal (no enjoyable or peaceful sensations at all - it was like my nerves were hard wired for battle), had mouth sores, my hair fell out, I had sores on my skin, constant nausea, couldn't sleep, was crying lots and had no ability to concentrate ... my sequential thinking was just gone! So I gave up trying to understand many things during that time ... just let it ride. Twice they had to take me off the drug from low levels of platelets. But the first trial ... for a year ... was the worst. I couldn't socialize much but my sister bought me a dog so I could cope ... best. dog. ever! Anyway not everyone has a difficult time with it but I wish I'd never gone on it, ever. If I had it to do over ... I'd give it a big pass.

MamaLama I so hope Mike gets the wonder drug without riba or interferon SOON. 1500 a pill indeed ... I have no words for how ridiculous that is. If that's what this new drug comes down to, I sure won't be getting it. Who has that kind of money? Surely there's some other way for them to bring it to market ... you can't tell me they're just trying to recover development and research costs. Grrrr. Many prayers going ahead for Mike getting in the right trial!!!!

I hope you can rest from your travels at least a little. It amazes me how well you do managing all this ... and taking time to care for everyone else on here, too. You are both in my thoughts and prayers.