Archives for posts with tag: hepatitis c

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).


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!


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  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!

 


Ok I’ve got my blogging hat on again. Promised I would write about how I told my family, so here I go.

As I mentioned previously, I decided to keep my diagnosis to myself until I had more information. I did this for a couple of reasons. I needed to get myself together, and I knew my family would have a lot of questions. I wanted to have the answers for them. So, I researched. A LOT. I read about all the tests I would need, and how to interpret the results. I read about the treatment–what the drugs were, side effects, success rates, cost. I considered the possibility of NOT treating, if my liver were in good enough shape. I am a pretty open person so it was hard to keep this to myself for a couple of months. I usually tell my family everything. Plus, I was really worried that I had put them at risk and wanted to rush home and tell them all to get tested, STAT!.

I wound up telling them about a week before my hepatologist appointment. I wanted to wait until after the appointment, but I realized my younger brother would be going back to college and I wanted to tell everyone at once. I figured that way I they could all ask questions and build off of each other’s questions and my answers. I asked everyone to gather in my parents’ living room. This was awkward. I kept waiting for them all to just wind up in the same room but it never happened, so then I had to make a production out of it. Damn.  Then they all knew something was up. I said, “Do you want the good news or the bad news first?” No one would pick, so I blurted, “The good news is, I’m not a hypochondriac, and I”m not just lazy! The bad news is, I have hepatitis C.”

First words out of my mother’s mouth: “REALLY?!?!!? (pause). I always knew something was wrong with you!”

Dad: “I thought you were going to tell us you were pregnant and getting married.”

Thanks for that guys.

Then they all just looked at me for a little bit, so I asked if they knew much about Hep C. Everyone shook their heads. So, I explained that it is a virus that attacks your liver, but that it is very slow moving and that most people do not die from this. I told them that lots of people never even know they have it, and that it can only be transmitted through blood to blood contact, not any other way. I pointed out that since it can be spread through things like nail clippers and tooth brushes, they should all probably be tested just as a precaution. I asked them if any of them had given blood recently, and it turned out that they all had…so we knew that no one else had contracted the virus, since they would have been notified.

I make this sound like I was oh so calm and cool about the situation, but in fact I shook the entire time I was talking to them. I didn’t want this to change the way anyone thought about me. By this I mean I didn’t want my parents to worry themselves to death. I knew they wouldn’t reject me or anything like that (I know I’m lucky). I did worry a little bit that they would wonder if I’d gotten this some other way than the blood transfusions, but it turned out that Mom and Dad had always worried about the blood transfusions I’d had as an infant. Thing is, that was back in 1985 when HIV was just being discovered, and people were VERY unaccepting of HIV/AIDS patients. A man who worked for the same company as my father was fired when management found out his young son had HIV. My parents were so frightened that I might wind up HIV positive, they never wondered about any other blood borne diseases. They didn’t have me tested for HIV, because at that time there was no effective treatment, and a positive diagnosis would have been of no practical use, and in fact would have been harmful. I can’t imagine what that must have been like for them, watching for signs of illness in their child and being afraid to have the test done that could have allayed their fears. Now I think they have been beating themselves up for not getting me tested for other pathogens as a child.

I told my(ex)  boyfriend over skype. I know, I know, it sounds like a copout, but let me explain. He was working at a summer job in New York, and had scheduled a doctor’s appointment for a concussion (long story). Now this guy NEVER goes to the doctor, and I knew he wouldn’t want to make an appointment specifically to get tested. So, I told him the night before his doctor’s appointment, hoping that he would decide to have the test done while he was there. He took it really well. He wasn’t repulsed, as I had feared, and he wasn’t afraid for himself (at least not that I could see). He was very concerned about me, and angry that I hadn’t told him when I first found out (I waited to tell him originially thinking I would do it in person, when he returned form NY). We didn’t talk for very long–I gave him the facts and told him I would email him some information that he could look at on his own.  He did read the info but wound up not getting tested because he had to cancel the appointment for insurance reasons. This still worries me, but it is his choice and I try not to pressure him.

So now my immediate family and a few close friends know. I haven’t told my grandparents because I feel it would only burden them, even though I know they will be angry if they ever find out from someone else (this isn’t likely). I know I am lucky to have people in my life who are so accepting. Unfortunately not everyone will handle this news as well as they did.  This information is yours and yours alone to share or withhold as you choose. This isn’t something you should have to deal with alone, so I hope if you are reading this that there is someone you can tell. I hope someday that I can be more open about this disease, but until I am more established in my career, I will have to keep silent. That’s why this blog is anonymous (for now).