Tuesday, January 31, 2012

Can't believe this week is February!

Still awaiting results from the last test, but we're confident my fiancé is still undetectable; hopefully we'll hear from the doc's office this week.

Everything else is going well. His anemia is well under control, even though he did need the Aranesp on Thursday. His numbers were low enough to warrant the injection, but they were on the high end of the spectrum, so very happy there. The anorexia is pretty much under control as well; his appetite seems to be good (not quite back to normal, but acceptable -- he eats one good healthy meal a day).

He still freaks out at his hair loss and the texture of his hair has changed a bit, too. I noticed the other day after he blow-dried his hair that it looks drier and a bit more coarse. The loss doesn't seem to be as much as it was in the beginning, but looking at pictures we took in June of 2011 (one month before he began treatment), you can really see a difference.

Not related to the Hep C, but his gout has been bothering him very much lately, and that, along with the temporary paralysis, makes it hard to watch him try to be cheerful and operate "normally" some days.

He's contemplating going public with his treatment. So many of his Facebook friends have been asking about him, both on my page and on his, and he just hasn't had the energy to spend any real time on the internet. He barely checks his e-mail. But as he gets closer to the end of treatment, he feels like it's time for people to know what's been going on with him.

We're both looking forward to the summer when he'll have been off the meds for a couple of months. I have a friend who's getting married in June and it will be nice to have him feeling even a little better and stronger by then!

Monday, January 23, 2012

Almost There!

Had a visit with Dr. Goldberg this week and took 24-wk test. Doc says my fiancé is doing exceptionally well and has close to zero toxicity with the drugs. He actually called my fiancé "the poster boy" for this treatment, commenting on how well he's done, especially considering the other health issues he has. Dr. G is also confident that the 24-wk test will be undetectable as all the other tests were.

We did discuss length of treatment; originally Dr. G said he wanted to push all the way out to 48 weeks, which really saddened me because of seeing what the drugs have done physically and spiritually to my dear boy. But at this last appointment, Dr. G said he feels quite comfortable cutting it off at 36 weeks, after taking another test. He said that if the results are as they have been all along (i.e., undetectable), then he gives his blessing for an earlier cut-off than he originally planned. That made us both very happy.

Talking to the doc, he mentioned that now we have about 6 months of people being on actual treatment, there are some changes and new info. He said that now they're (whoever "they" are) talking about a possible 12-week treatment, which would be amazing. And they've also found that it's not necessary to have a full 20 grams of fat with the Incivek. There wasn't any cut-off number of grams; I'm guessing just some fat to help it transport into the body is all that's needed. I can only imagine what news will come at the one year mark! I still believe that all the people in this first wave of what I call the "triple threat" treatment are heroes and pioneers. To go through the really difficult stuff and be the ones the industry learns from is an amazing thing.

My guy is looking a bit better and his spirits are coming back around again. It's been 12 weeks since he's been off the Incivek and his doctor says that's right on track since, that's about the amount of time for that drug to leave your body once you stop taking it. And now, when I give him his Riba, he gives the capsules a big kiss when he takes them, realizing how short a time is left to be on this treatment!

Anemia is under better control; he hasn't even had to have an Aranesp shot over the last 3 weeks and his numbers keep going up every week! Anorexia seems under control; he fluctuates about 4 pounds week to week. Pegasys is still going well; although last week was the first week in months that he had any flu-like symptoms after the shot. Still having issues surrounding his back (intermittent temporary paralysis is still there), but seeing him feeling better with his Hep C situation is like the sun pouring through the window after the rain!

Tuesday, January 10, 2012

Status Quo

Nothing really new. And that can be a very good thing. Although we have noticed this week that my fiancé is sleeping more than he has been. We're both chalking it up to the Riba. It's the only culprit among his medications that can do that to him. Every day I see him so fatigued and sleepy and wish he didn't have to go the full 48 weeks with this treatment. But, that's his decision in the long run and I have no right to say anything about it.

His blood levels have been great and no transfusions in over a month. His hgb is up around 10 range and that's wonderful.

Still having back issues, and worse, still having the temporary paralysis and falling episodes. That completely breaks my heart, so I can only imagine how he feels about it all.

His weight has been very stable lately, so that's a good thing, too.

Wednesday, January 4, 2012

Happy (and Hopeful) New Year

A new start to a new year and the wonderful news is that after the 24-wk blood test (done a bit early at 20 wks), my fiancé is still

U-N-D-E-T-E-C-T-A-B-L-E !!!

He's been rethinking the full 48-wk treatment as the meds have seriously wrecked him and the thought of 24 more weeks is almost unbearable. But the final decision is up to him. His doc wants to push him all the way out to increase his chances of being 100% absolutely, no question, fully cured. He's been undetectable since the 4-wk mark (his viral load at the beginning was over 9 million) and with all the data out there, I feel like going the extra weeks isn't necessary. That being said, I'm not a doctor and don't know all the facts, as much as I have done research on this. Maybe we can just push it to 36 weeks?

Happy Happy New Year to all. I wish a very health, happy, and prosperous (in every way) year to everyone.

Symptoms/side effects: still dealing with the hair loss (but less than it has been); anemia (much better -- no transfusions in a month at least); anorexia (mostly under control....weight is currently 180..but he's eating well).