Latest Bloodwork Results -- Back On Treatment!

Doc called this afternoon (following a call from me). My HGH count is above 10 and the WBC is, I believe 1500. He put me back on. I'm to start with a reduced Ribavirin dose, but the Interferon is the full load (consistent with what I've been reading about fixed dosing of Interferon vs. reduced dose -- the fixed dose party seems to be winning that argument).

We did have a conversation about my concerns. I said to him (in essence) that I trust his judgment and have been following instructions to the letter. But I also read and question. I work in a very fast-moving field and it's not unusual at all for developments to pass me by. I can certainly understand that this is also a very narrow and fast-moving field. He didn't say anything legible, but made agreeable noises. Certainly nothing that would look bad on a deposition. That's another downside of American medicine (outside of the issues of who gets insured and how, a topic I refuse to be drawn into) -- everybody's got a lawyer.

Honestly, I do trust this guy -- he comes too highly recommended to write off. And, to his credit, I notice that he took action consistent with what I'm reading in current literature. In other words, it appears that he's done some reading and possibly some outside consulting. Which is what I was looking for to begin with.

I asked about how the gap in treatment might affect me. He points out that I've been off for less than three weeks and pointed out the slow-moving nature of the bug. Over a 48 week course, it should make little difference. I hope he's right (but meanwhile, we're taking measures to keep me on treatment).

I'm back in full-force. The shot I took tonight replaces last Friday, and he wants me to do it again on Saturday or Sunday, then move back to my usual Friday routine. Meanwhile, I'm to continue the Procrit and Neupogen and get my blood monitored weekly. After next week, he said I would probably go to a full dose of Ribavirin.

I'm the definition of mixed emotions. I have come out of the cloud enough to realize how crummy I felt and I've been kicking and screaming to get back in. Damned whiny Interferon patients! No satisfying them!

I'll need to find a suitable quotation regarding mixed emotions, but it's too late to go trolling the Internet. In any case, back on track. I've already got the lead-like Interferon taste in my mouth. To bed before this stuff comes on stronger!

On Procrit and Neupogen, Still Off Treatment

The Procrit is a once-a-week shot, the Neupogen is three-per-week. I started them on Wednesday (May 24) and took the second Neupogen Saturday. This has all been a learning process. I had a notion that my blood levels would bounce back quickly after getting off tx and on the blood boosters. Wrong! It takes a while for the numbers to come back.

From the Procrit prescribing information:

Because of the length of time required for erythropoiesis – several days for erythroid progenitors to mature and be released into the circulation – a clinically significant increase in hematocrit is usually not observed in less than 2 weeks and may require up to 6 weeks in some patients.

The Neupogen insert was considerably less willing to set expectations about how long it could take to raise WBC counts. But I doubt it's an overnight effect.

Anyway, I'm still circling the airport.

I'm noticing some mild side-effects from the drugs. Fortunately, no dashing to the bathroom. I have some fatigure, mild achiness, and some mild to moderate itching, mostly on my scalp and back. If I were on treatment, I doubt I'd even notice it.

Meanwhile, I think I've succeeded in pissing off my estimable gastroenterologist. My GP contacted his office saying that I had questsion. The note that came back was that we've already talked and the treatment plan is set. Hmmm.

The thing is, I trust his judgment. His reputation is sterling. My question was whether he was operating on current information. I suspect that's been resolved -- he did prescribe the blood boosters. But the downside is that the damage is done and now I'm having to recover before starting up again. At no point have I seriously considered going back on treatment of my own accord. I've got too much personal experience with these drugs to treat them lightly. No way am I going to take them blindly without medical monitoring.

I have an appointment for a second opinion in mid-June. That's a week after my next scheduled appointment, and I do expect to get back on the treatment before then. Until then, I wait, albeit grumpily.

Got The Goods!

I picked up my Procrit and Neupogen and took them last night. Both are packaged in single-dose vials and you have to fill a syringe -- a first for me. The pre-filled interferon syringes are so much better! Not only are they handier (getting that last mililiter into the syringe is a bear!), I swear they're sharper. Perhaps pushing through the rubber stopper dulls it just a bit. Anyway, I have to do the Neupogen 3x a week and the Procrit once a week. I hate needles! But the interferon has been pretty good training. I awoke with a headache, but haven't noticed anything else I'd consider a side-effect. I've been warned about diarrhea and bone pain. Another plus for working from home!

I was shocked at the cost of these drugs -- around US$3000 for each! Next time I move around some investment money (not that there's a lot of it), I'm going to pick up some pharma stocks. Fortunately I have good insurance. Lord knows that over the years I've paid enough into the system. And keeping me on treatment will hopefully save the expense and trouble of dealing with complications!

I talked with my general practitioner last night. He believes I'm raising legitimate questions and is going to talk with the GE. The GE that I'm seeing is a doctor's doctor. My GP sends his own family to this guy for colonoscopies and such. In any case I expect to talk further and may get a referral for a consult.

Meanwhile I've been off tx for 12 days. I'm not happy about that, however some current papers I've seen in www.hivandhepatitis.com suggest that I'm still a good candidate to clear the virus due to the fact that I started treatment with low liver damage (some inflamation, mild scarring, no cirrhosis), and that I have genotype 4 rather than 1.

Now to get back on the horse!

Got Prescriptions For Procrit & Neupogen

There are still insurance hoops to go through, but they should be ready by Monday (tomorrow). The doctor says my white blood cell count is at 1500 and red blood count is at 9 and that he did not want me going back on treatment yet. He wants me to have another blood test on Thursday and then go back on assuming positive results. The trouble is, that means I'll be off the program for over two weeks by the time I get the results. Based on this article, I might be able to start back with support from "growth factors" with my numbers at the current levels. The article says, "Neutropenia is generally defined in many trials as an absolute neutrophil count of less than 750." I don't know whether the number being thrown at me is the "absolute neutriphil count," but mine was 1500 last Wednesday. He's saying he wants it at 2500. We'll talk about it.

When I first broached the subject of Procrit and/or Neupogen, the doctor's response was "I don't prescribe those drugs." At the time I had been reading in Ron Metcalfe's page and on the Hepatitis C Association page that the use of those drugs is close to routine. I suggested to him that it did not seem to be unusual and that maybe he could consult with someone because my priority is to stay on the treatment. He called me later during the day and said that he'd talked with a hemotologist and that I could pick up scrips for both drugs. He has submitted paperwork for the pre-authorization process and I've dropped off the scrips at the local pharmacy so they can order them. These are pretty expensive drugs, but dammit, they're cheaper than cancer treatments or a liver transplant.

What this boils down to is that I will be agitating to resume treatment on Monday. I am also shopping for another doctor, if only to consult with my current one and get him educated. Meanwhile, it looks to me like my chances for sustained remission may have been reduced. Fortunately, this interruption comes at Week 17. At least I'm into the treatment. Here's what the article says:

Today’s Standard of Care

Recently the importance of adherence throughout therapy was studied with regards to its affect on SVR. Maintaining the optimal dose of both interferon and ribavirin is particularly critical in the first 12 to 20 weeks of therapy. One factor that determines adherence is the quality of life of patients during therapy. Another important determinant of adherence is the ability to manage the side effects of therapy including hematologic management.

The lessons to be learned here are important. The most important is that, as a patient, I'm responsible for my own care. If that means I have to drag my care advisor into the Twenty-First Century, so be it. I suspect my doctor has gotten comfortable in his practice and has not stayed current with the literature in this fast-moving field. I'd love to change docs and I may do that anyway, but it took me a month to get in to see this guy to start treatment. That's not an unusual wait to see any specialist as a new patient outside of an emergency setting.

I'm sorely tempted to start treatment myself, however I'm thinking of consequences. If I treat myself against medical advice (nevermind, that I think it's ill-advised), my doctor could easily say that he can't work with me and then I'm on my own. I have a three-week supply of meds. Then what? As I mentioned, it's not unusual for appointments with this sort of specialist to take a month or more. Again, I'm better off educating the doc.

It's been interesting to see myself come out of the ifx/riba haze and realize that I really want to be back in it. I'm feeling about 80% normal now. I'm certainly thinking more clearly than I was on tx, but I want to go back.

With luck, I get the blood boosters AND take the ifx shot and the riba tabs.

The Doc Called This Morning

I asked about the possibility of using Procrit or other hemoglobin boosters. He said that his concern is the fact that in addition to the low HGH count, my white blood count has dropped sharply (from 3000 to 1000 in a month). It's the combination that he's concerned about. I'm looking around on the Web for instances of people using both Neupogen and Procrit. If anyone here has experience with both drugs in combination, I'd like to hear about it.

I asked him what the break in treatment will do to my chances of SVR. He said he didn't know. I stressed to him that I don't want to be fighting this thing for the rest of my life and that my priority is to complete treatment.

I will be doing a CBC test to check all blood levels tomorrow. Hopefully I'll be built up enough to get back on the horse. Meanwhile, I'm going to call my college buddy who is now an internist and get his thoughts on using both Neupogen and Procrit (or a similar combination).

Fighting on.

More Anemia

Just got back from doc. My HGH level is 8 and my white blood count is 1000 (normal is about 15 and 5000). He wants me to take a break for a week. No interferon tonight, no riba through next week. He wants me to build back up before resuming tx, possibly with a reduced dose (I'm presently taking 1200 miligrams, 6 tabs per day) and I'm pretty small, 5'-6" and 145 pounds. I've seen other people's dosages in the boards and I seem to be taking a pretty large dose. He also bugged me to stay out of the gym, saying I could go over the edge without realizing it. [Grumble] Never had a doc tell me to get less exercise.

I asked him about the risk of letting the virus adapt and he said that the meds will stay in my system for several weeks, so I'm still fighting the virus even skipping a week. Right now he's more concerned about the blood levels. Procrit is a possibility, but he wants me to take a break first. My friend Ken took it and felt much better, but the sides from that were also pretty bothersome -- diarrhea, headache. Everything has a price.

The grind grinds on.

Late Week 17 Check-In

I've been spending some time on a couple of support boards. I recommend them both. One, http://hepcassoc.org/messbrd/ is kind of U.S.-centric, but with a fair amount of Canadians. The other, http://www.ronmetcalfe.com/hepcforum/, is hosted out of the U.K. There is a good deal of overlap between the boards. I found that Carol, who raised concerns about my earlier misunderstanding of my treatment plan, is Mrs. Ron of ronmetcalfe.com. So this is a pretty tight-knit little club.

Another blog I've been reading lately is http://www.hepcboy.com/. Another Englishman. He's been kind enough to post a comment or two here. I really like his British stiff upper lip. The best bit of wisdom I've picked up there regards self-discipline. "Be your own tyrant!" He's facing some challenges with his treatment, but doing it with good humo[u]r and a measure of courage.

It's helpful having folks around -- even in virtual space -- who understand what's going on. I feel like anyone who hears me talk about it is going to think I'm whining. My friend Bob checked in with me yesterday. He has pointed out some of the weird little side-effects and occurrences that go with treatment. The taste changes (which he pointed out unprompted) are driving me nuts. The lunch meat I've been making my lunchtime sandwich with for years suddenly seems like it's soaking in brine. I skipped lunch today because nothing looked good. Just ate some cereal and nibbled fruit all afternoon. Dinner was good -- scrambled eggs and hash brown potatoes.

The physical effects are certainly present. I think I've just gotten used to being tired. My son wanted to go to the gym and I figured it's time. He's getting all pumped up for football and didn't think he got enough time in the weight room. He went off and worked on his legs while I spent a half-hour or so on an elliptical trainer. It's easy on the knees and it's easy to vary the intensity. After that I did some stretches and a some light weight work. I'm feeling much better now. My back has been bothering me; that's usually a sign that I'm being too sedentary. Before we left I got on a scale and found that I've lost about five pounds. I'd been working out pretty steady before treatment. Weight is getting redistributed the wrong way.

The physical side-effects are an annoyance, but what's really bugging me these days is the emotional effects. A maudlin country song can make me tear up. My daughter's cockatiel bolted last week and I'm all bummed out. I'm going to the doctor tomorrow. We're going to talk about exercise (I need more -- I'd been avoiding the gym on his orders) and anti-depressants. I'm also having some attention problems. I'm easily distracted and the things I need to pay attention to (like maybe WORK!!??!!) don't hold my attention. I suspect I've always been a little on the ADD side. I suspect I'm like I've always been, only more so.

I'm rambling. That's something else -- once I get into something, I won't let it go. Time for bed. Work tomorrow. Doc. Hey! An outing!

Best to all.

My doctor just called

I've been operating under a misconception. My doc has no intention to stop treatment for two weeks at Week 24 as I thought. Once I'm on treatment, I'm on for at least 24 weeks, and hopefully 48. If I'm not in or near remission at Week 24, treatement stops and I look for alternatives.

The lack of a 12-week viral load test is a bit of gamesmanship with the insurance companies. He has had patients who failed to achieve a Log-2 drop in viral load at 12 weeks and their insurance company refused to pay for continued treatment. He believes that everyone should get a minimum of 24 weeks regardless because of the therapeutic effect of giving the liver a break. He said that in my case in particular, he wants to continue treatment since my liver enzyme levels are and have been normal since about Week 3.

So far so good. Thanks, Carol for flagging this and helping me get straightened out.

Week Sixteen

I've been spending some time over in the Hep C Association forums. If you aren't familiar with it, it's a good resource. I'm cwk on that forum.

I posted a question regarding my treatment plan (two-week interruption at Week 24 for evaluation and viral load test). It generated a number of questions there, just as it did from Carol. I have a call into my doctor's office to go over those questions. I haven't had a Week 12 viral load test, and the plan to interrupt treatment for two weeks stirred some concern. This just goes to show that it's a good idea to manage your own care. The doctor wants to be in control, but I'm viewing him as a consultant and advisor.

I took shot number sixteen about 14 hours late. My wife and I had gone to the resort where we were married twenty years ago and frankly, I really didn't feel like dragging needles and sharps containers with me on a romantic getaway. The idea just did something to the mood.

It was a good trip -- just an overnight. The restaurant was the highlight. We spent over US$100 in the restaurant and that's without wine (which I really would have liked, but obviously I'm on the wagon). I had a swordfish steak and she had halibut. Truly an amazing dinner.

I'm feeling pretty good this week. I had some concentration problems yesterday. It seems like Monday is my day for congnitive issues lately. I'm a little better off today, but I don't think this is a good time to take up a new skill.

I mentioned Bob, who went through the program some four years ago. He called me again on Saturday just checking in. Interesting guy and very encouraging to talk with. He has tipped me off to several side-effects. One is the funny metallic taste (he calls it lead-like, I think of zinc) that I have in my mouth. He says that post-treatment one of the things that has stayed with him is an appreciation for good food, well prepared. Having a taste for good food, I was pleased to hear that. I suspect I may have a similar experience.

Bob says that he usually has one or two people in his queue that he checks in regularly with and talks them through treatment. When this is over I intend to return Bob's favor by helping others in the same situation.

Cheers, all.