Archives for posts with tag: interferon

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 ūüôā


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.


Had my second appointment today, this time with Dr. Bacon’s nurse practitioner (she was in on my first meeting with him). Despite the rise in hemoglobin I have not felt any more energetic and am starting to worry about getting myself in a hole with my studies. She said I could quit the telaprevir now (it would only be two days early) but I am still leery of it. I know at this point it can’t make much difference, but it is almost like a superstitious thing with me now. Basically the only thing to do is get blood drawn again in two weeks, at which point the telaprevir will have cleared my system and my hemoglobin should go up a bit more. However, we need to get me back up to 800 mg of riba, and I have a feeling that as soon as we increase the riba the hemoglobin will go right back down and I’ll have to start procrit anyway. Oh well I guess there isn’t much I can do but wait and see and try not to get too behind study-wise. I also re-emphasized that I am a little concerned about my potassium deficit since no one knows what causes it and it seems to fluctuate pretty rapidly. My serum creatinine levels have been slightly elevated, so I’m concerned that:

A. My kidneys are being damaged

B. My liver might be in worse shape than was assumed, since I have never had a biopsy and that is the only definitive test (liver cirrhosis and kidney disorders can be linked)

C. My heart might be under a little too much stress what with the low hemoglobin and fluctuating potassium levels.

Got the same answer as before, just keep taking your pills, we don’t know what is causing it.

I got a CBC, CMP, and viral load drawn today around 4:00 after the meeting with the nurse practitioner. Today around 5:30 my cell phone rang. It was the on-call doctor telling me my potassium levels were too low and that I should go to the ER to have them administer it intravenously. I asked him what it was at and he said 2.7. I told him that back when I was first diagnosed with hypokalemia (low potassium) it had been at ¬†2.7, and that I already have potassium supplements prescribed. He said if I didn’t want to go to the ER, to take a double dose of my potassium immediately, and arrange for another CMP first thing in the morning. And to still go to the ER immediately if I felt weak or dizzy….I said ok, even though I feel weak and dizzy most of the time already because of the other meds. Assuming if something life threatening was happening, it would get worse somehow. I would feel more comfortable if I didn’t live by myself at this point, but there’s no helping that.

I’m feeling ok, no worse than usual and no heart palpitations today (I was having some over the weekend) and the potassium has absorbed by now I’m sure. I’m glad I decided not to go to the ER because I’m sure I’d still be there….first I’d have to wait, and then once admitted it would take at least an hour to administer the potassium via IV, because if you do it to fast you can cause¬†arrhythmia (I’ve been paying attention in pharmacology!). Also, potassium administered intravenously burns, I hate IVs, and ERs are full of sick people. Last thing I need is a case of pneumonia.

Which reminds me, I need to get my flu shot….and apparently make an appointment with an optometrist since my vision has gotten blurry. Have to make sure it isn’t “cotton wool spots” caused by the interferon. Yay!

Excited that Friday is my halfway point! Very nervous about the 12 week viral load. If it is not undetectable I’m not sure what I’ll do, because I don’t want to treat for a year and might not be physically able to, anyway. Fingers crossed!


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 ¬†sleepless 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¬†obsess¬†about 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 ¬†takes care of it, and it isn’t too¬†noticeable. 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!

 


So, I didn’t make it back on here the day after. It’s Friday night now, and after a wild night at Culvers, I have returned to type. Not wanting to lie to you further, I’m going to admit up front that I’ve already pretty much forgotten what I promised to type about in this post,and I’m too lazy to go back and check. This is a large topic, and I’m sure I’ll get around to whatever it was eventually.

Here’s how my visit with my new infectious disease doc went:

First, I dressed up like I was going to a friggin job interview because it is important that your doctor take you seriously and listen to what you have to say.  Not totally necessary, but helpful. I would recommend at least brushing your hair.

Then, I waited in the waiting room for approx 1.5 hours. Not too unusual for a specialist, unfortunately.

Then I was shown into the exam room. By that time my bladder was full so I had a little conversation with the nurse that went like this “So I know you guys are going to want a pregnancy test as a condition of starting the treatment, and I’m just wondering if you all run that through a blood test or a urine sample? My point being that I have to pee, so if you’re going to need some of it you might want to take it now.” ¬†GREAT ¬†first impression. She told me to go ahead and pee in the cup in the bathroom just in case. I have a feeling that at the end of the day there was a confused nurse going..”um…whose pee is this?”

Then I met the doctor. Older white male who was surprisingly open minded. He had me lay down and palpated my stomach and ribcage area to see if my liver was enlarged (it wasn’t) and listened to my heart. He gave me the usual talk about how treatment is tough and can cause a strain on relationships and work. I know this is all legit, but I’ve already scared myself enough and thus found it redundant. Long story short, he approved me to start treatment with the new drug, telaprevir, in combination with the old standard of care, interferon plus ribavirin. My insurance requires preapproval, something the doctor’s staff takes care of. You’ll probably want to follow up with said staff to make sure they are actually doing this, and requesting the correct medication.

Then I went downstairs to the lab, where I made another great impression by insisting that if they didn’t let me lay down while they drew my blood, I would pass out (this is unfortunately not an exaggeration). I already had my ¬†glass of water ready as well as a moist paper towel to put over my eyes. I didn’t pass out. Yay. Did I mention I want to be a nurse?

The doctor wants to see me back in two weeks. I don’t know if he anticipates having the drugs ready for me to start at this time, or if he will just be going over the results of the blood tests with me. I’ll let you know.

Hopefully I will stay motivated and post some more tomorrow about treatment options and side effects. Night night!