Archives for posts with tag: incivek

I went on a HIKE yesterday! My first since starting threatment! Granted it was only 2 miles, and prior to treatment 6 miles or so was my average, but it felt SO GOOD to be out!

This is where I am giving the procrit a lot of credit. I still get fatigued really easily (as in, I still need waaaay more sleep than the normal person) but I don’t get short of breath and I don’t feel like I am going to pass out. My heart rate got up pretty high, but that is just because my body isn’t used to the activity.

Went to a yoga class with my friend from nursing school on Thursday and fell in love with it. At the beginning of the class my back was KILLING me sitting in lotus position. By the end of it, whene we came back to lotus position, my back wasn’t hurting at all. I actually slept less than usual that night but woke up feeling more refreshed. I think this is going to be the perfect way to gently get me baack in shape as I near the end of treatment. The meditation component helps a lotwith the anxiety, too.

I’ve always wanted to get into yoga but there are so many different styles of practicing that it was frustrating for me to find sa teacher whose style was compatible with what I need. (meditative, but not so much that I fall asleep, spiritual but not airy-fairy, and strengthening without being punishing). Went out and bought a chai yoga mat by gaiam, very cushy and not slippery. Anna and I are going to go twice a week ­čÖé


I can’t believe Friday will be the start of week 18! Annnd I got my 16 week blood draw back today when I saw the nurse practitioner, and I am still undetectable!!! I have to admit I was a little nervous about this one since it is the first viral load drawn since I finished the incivek portion of treatment. Now my next viral load will be drawn at week 24 when I’m doooone.

My potassium level has still managed to scrape into the normal range, and the nurse told me I could take all 40 mg at once instead of having to split it up and take 20 in the morning and 20 in the evening, so that will simplify things.

Bigger news–I have responded unusually quickly to the Procrit! It usually takes 4 weeks to see the effect of the shots, and not only did I see an effect at two weeks, I am actually already up as high as they want me to go (I jumped from 8.5 to 11.5). The NP was going to switch from shots every week to every other week, but I brought up the fact that we still haven’t upped my riba dose. So, I am going to go back up to 800 mg of riba and we are going to continue with the shots every week since increasing the riba will probably send the hemoglobin back down.
I was hoping that the hemoglobin being back up would make me less tired but so far it hasn’t. The NP said that this is probably because of the fact that my hemoglobin was so low for so long, my body is still compensating. Meh. At least I can up my riba, which was really the whole point of starting the procrit.

At this point I think I’ll make a list of side effects I have experienced so far, approximating a timeline:

Severe nausea, vomiting, chills–weeks 1-4 (intermittent nausea with decreasing frequency post week 4)
diarrhea (intermittent) week 1-present, decreased frequency after cessation of incivek
intermittent insomnia, week 1 to present
Anxiety, week 3-present
low grade fever (pretty much constant) week 1-present
Extremely dry skin-weeks 2-6
Hypersensitivity to scents, weeks 1-8 (smell of coffee made me nauseous)
Heightened sense of smell minus nausea, weeks 9-present
Altered body odor, weeks 4-present (controllable with clinical strength deoderant)
Flushed feeling–weeks 1-3
Extreme fatigue–intermittent, week 1- present, improved slightly on cessation of incivek
Loss of appetite–weeks 1-12
rash (appearance similar to contact dermatitis, itchy, covering limbs and trunk) weeks 1-2
hypokalemia (low potassium) weeks 6-present, potassium supplements sometimes effective
Hair loss–week 4, increasing rapidity by week 12, continuing to present
Decreased growth of body hair, week 3-present
Lightening of hair on head and body, including eyebrows, week 6-present
increased length of eyebrows, week 12-present
increased length of eyelashes, week 12-present (weird but not unheard of side effect of ribavirin)
Weight loss of 6 pounds in first week (yes even with all that fat), have not gained or lost weight since then.

As a reference point: Nurse Practitioner characterizes my treatment as “rough the entire time.” So, if you are reading this and considering treatment…I am not the “average.” However when comparing notes with others in the hep c community, my experience doesn’t seem as extreme as it could be. I haven’t been hospitalized, I have no secondary infections or liver problems, I avoided administration of IVs, and my nausea improved over the course of time. Many people say that you will only find the worst case scenarios online, because the people with the bad sides are the ones that get online and post about it. I agree with this to a certain extent, but I would like to point out that I started this blog weeks before I began treatment…maybe I just got “lucky.” So far it has all been worth it.


AND I’M STILL UNDETECTABLE! So, I officially only have to treat for 24 weeks.

With telaprevir, you check viral loads at the end of weeks four and 12…if your viral load is undetectable at both of those points, you treat for 24 weeks rather than 48 weeks. Telaprevir is stopped at the end of week twelve and the remainder of the therapy consists of the ribavirin and interferon only.

I stopped telaprevir a couple of days early and have now been off of it for a little over a week. For all of you wondering if it gets any easier once telaprevir is removed from the mix, I have to say based on my experience the answer is YES. I started feeling MUCH more energetic right at the one week mark. I don’t know what my numbers look like yet to compare (I got a CBC and CMP drawn today, so I’ll be able to comp in a couple of days) but I am willing to bet my hemoglobin is up, and most likely my potassium as well. I’m curious to see if my potassium stabilizes once the telaprevir is completely cleared. If it does we’ll know it’s the culprit.

I really hope I don’t jinx myself by writing this, but the difference in the way I have felt this past week is really remarkable. I even stayed up til three am studying one night and was still coherent the next day! I’m in awe. My face is no longer numb, the white circles around my eyes are starting to fade, and I can even walk briskly for short distances without feeling like my heart is going to explode. I am still at the 600 mg dose of riba, but I hope I can take it back up to 800 soon. Maybe I’m pushing it, but I am also optimistic that I might even be able to avoid the Procrit. We’ll see what my labs say. I really hope the upward trend continues, but if I could even just stay at this level for the rest of treatment I will consider myself darn lucky.

I am going to go celebrate by eating a brownie. Just because I feel like it, not because I have to (however I think the desire for Oreos has been permanently eradicated from my brain. I should call the FDA and report it as a telaprevir side effect).


Dr. Bacon called my cell phone today. Twice. No message was left so I called the unidentified number back…turns out he sat on his cell phone. My friends, this means two things:

1.) He took the time to program my number into his personal cell phone

2.) I now have his cell phone number. Muahahahahahahaha.

Just kidding on number two, I won’t use it unless he expressly gives it to me and even then only in dire emergencies. I already feel bad for having emailed him twice on a holiday weekend without actually being his patient. Which I apologized for in a somewhat discombobulated way once I realized who I was talking to. I think he still probably hates me but oh well.

Still waiting to hear if I am going to get to see him on either Tuesday or Thursday (which is what he said he is aiming for). It is midnight on Monday and I have class tomorrow….nerves are jangling. I HATE not having my days planned out in advance especially when something this important is on the line.

Thank God Mom is here, you think I am a mess now? Well multiply that by a thousand if I was here by myself.


I have decided to devote a post to this question because I have heard this asked so many times by people who are considering treatment and who are treating.

Most people don’t know that chemotherapy is not only used for cancer. It is used for hepatitis and in some cases of multiple sclerosis. I am sure there are other examples but you get the idea. Some people will say, “but isn’t any drug technically chemotherapy, since they are chemicals used to treat illness?” If you want to look at it that broadly, yes, but this treatment is also chemotherapy in the popular sense of the word. Here is why:

There are a couple of different types of what we traditionally think of as chemotherapy. Some of them are hormonally based, some are made from plant proteins, etc. With Hep C treatment, the part of the therapy that makes this classifiable as chemo is the interferon. If you are on Pegasys (peginterferon alfa-2a) it is the type of chemotherapy known as an “antineoplastic agent” and is made from human proteins. Go to this link for a better summary than what I am capable of:
http://www.drugs.com/cons/peginterferon-alfa-2a-subcutaneous.html
Additionally, the same type of interferon is also used to treat certain types of melanomas and hairy cell leukemia, except in those cases they use higher doses than what we use in our treatment regimen.
Some people have called this “chemo light.” I take exception to that. Some of us have a very hard time with this treatment and to call it “lite” is misleading. Also consider that even though we take a smaller dose of the chemotherapy agent than someone with cancer, in many cases with cancer you do not administer the drug every single week for six months or more, but rather in larger IV doses spread out in time…so I’d think that in many cases it kind of “evens out” as far as difficulty of treatment. Our hair thins. We throw up. Our red and white blood cells die, our hemoglobin goes down…this is not something to take on lightly. I believe the benefits of this treatment outweigh the risks, especially if you are in reasonably good health to begin with. I will tell you outright that I am an advocate of treating. However, anyone considering this treatment should go in with their eyes wide open so to speak, and if you don’t think you can handle chemotherapy, then don’t take on this treatment because that is what this is.

I feel so good today! I took my fourth shot last night and fully expected to be terribly nauseous all day, as I have every other weekend, but I’m NOT!!!! I even ate a regular lunch.

I slept most of the day and moving around makes me pretty tired, but I am in a very good mood. Feeling like maybe I hit my low point last week and am on the upswing as my body adjusts to these meds.

Had my doctor’s visit yesterday, fell asleep in the waiting room because SIX people (including me) were scheduled to see my doc at the same time….surprisingly that didn’t make me angry, just sad at this evidence of what a shortage of doctors there is. I asked the doc if he ever gets to eat lunch (my appointment was at 11:45). He said “Me?? No.” He is just doing his best, like the rest of us. Too many patients to see and not enough hours in the day.

My complete blood count numbers were all still in normal range, slightly lower than last time but nothing to be alarmed about. I’m hoping this means I won’t have too many problems down the road with anemia. I have lost five pounds in three weeks, and he cautioned me that I need to keep the weight on. I think I will be able to since the nausea is getting better. My viral load test should be back this upcoming Friday, and I have another blood draw and see the Dr again in two weeks. I got a prescription for the smallest possible dose of ambien (5 mg) to help with the ┬ásleepless nights. Went to Walgreens and filled it and refilled my Zofran, and picked up some Walgreens brand bath oil.

I LOVE THE BATH OIL. I have been bad about applying body lotion despite my extreme dry skin, and I have a long standing addiction to hot baths. This oil made my skin feel almost back to normal after one bath. I rubbed it into my face and it feels soooo much better. That plus putting the Aveeno body butter on my feet and covering up with socks right after has been helping tremendously.

I’ve decided to work on “compartmentalizing” things mentally. I need to stop thinking about work when I am at home, and as bad as it sounds I can’t spend so much mental energy on other people’s problems. I am trying to find a balance between being a good friend and showing concern and support and making other’s worries my own. Also trying not to┬áobsess┬áabout the results of the viral load test (please please please be undetectable).

I’m pretty excited about today being so good. I have to be in that wedding a week from today and I think that this is a good sign that I will be able to last the day. Wish me luck!


Day 3. Thank god for zofran. It totally took care of the nausea and vomiting. Didn’t want to puke up any of that $20,000 worth of meds.

I have been sleeping A LOT. I feel pretty good when I’m awake, but will lay down for “a little nap” and wake up three hours later. Around 3:30 I noticed what looked like a heat rash on my feet. By 4:30 it was on my tummy, back, chest, inner thighs, and forearms. Only itches a tiny bit occasionally, gold bond lotion ┬átakes care of it, and it isn’t too┬ánoticeable. I thought maybe I was imagining things, but my peeps at hcvsupport.org tell me that they experienced the same rash within the first couple of days. They think it is telaprevir doing it, because they have experienced “riba rash” before and tell me it is a different type of rash.

Overall, felt good enough to make the 2.5 hr trip home (Mom drove). The doc called twice to make sure I was feeling ok (on a holiday weekend!) and gave me his cell phone number in case I needed anything else. He’s a good guy.

When I got home I took (you guessed it) a nap, then took my brother’s dog out for a walk. It is the doggie’s first fourth of July and he loves fireworks. He has learned to look up for the sparks once he hears a boom. What a smart puppy.

Happy Fourth to everyone (a day early) and a special shout out to my friend Dawn, who is starting her treatment tomorrow on (Hep C) Independence Day!