back from doc

[RamsBaby]

We went over all my results from my tests I had last month-U/S, blood work, biopsy, etc.He said since my VL is low 675K, now would be a good time to try treatment. I would treat for 48 wks with a PegIntron/Copegasys and blood work once a month to check liver function, ect. This isn't written in stone, if I don't respond, we'll re-evaluate the situation at regular intervals.. I'm a Geno 1b, which he said is sometimes a little more resistant to the medications. But that since I'm only stage 1/2 grade 1, minor damage is done and hopefully won't worsen before it gets better throughout treatment.

So I suppose I'm in the preparation phase. I hope I don't have serious side effects, but chances are I will, I'm already exhausted most of the time. So I need to make things easier for the family and get them more willing to help out around the house. Currently their motto is "If mom doesn't do it, it doesn't get done". That's gotta change soon.

I feel I'm mentally ready to start treatment. But office protocol has a waiting list of Hep c folks, waiting to see the Nurse Practioner for their Training session. My appt is not until Dec. 29. I've asked to be called if someone cancels or is a no show. Until then its back to learning more in's and out''s of HCV, as knowledge is power.  

[newleaf09]

You will need to take the ribivirin pills with a little something with some fat content.  It helps the drug stay in your system longer.  It can be a meal or a handful of nuts or spoon of peanut butter.  Otherwise just try to eat a balanced diet.  You will figure it out as you go along.  Do try to eat, it will make you feel better.

Whichever doctor is reading your lab reports and remarking on low levels will be the one to prescribe a rescue drug (drugs used for bringing up levels of blood cells that have gotten too low due to the treament drugs).  Those are epoiten (Procrit) and filgrastim (Neupogen or Neulasta).  They are expensive and will need to be preapproved by your insurance company, but well worth it to keep you safe.

Antidepressants are very commonly used to control depression or irritability from the interferon.   Some people get by without them at all, some start them before the TX drugs.  You just use the minimum dose to control the mood dysfunction and wean off of them after TX has ended.  They cost me about $50 for a one month supply.  Good luck; you'll do just fine.

[RamsBaby]

Forgot to add: the injection training session is a group session? I thought that was odd. My HCV learning session is 1-on-1 with the NP.

Any diet suggestions while treating? I don't have much of an appetite now, and eating is very important when taking any kind of meds. Is there anything I should stay away from completely? Anything that will help me?

[RamsBaby]

Well the NP just called and said the Dr. wanted me bumped up, which is good its what I wanted. I got a small list of things to do between now and then, mostly getting copies of stuff. I asked my PCP if I needed a physical or anything before treatment, and they sent me copies of my labs. DUH! I'll have to call them tomorrow. NP did mention the need for anti-depressants for some folks, I hope I don't need any other meds besides the Peg and Riba, but who do I call if I do? The GI or PCP?

Guess I'll worry about that when the time comes. Sometimes I think about things before I need to. I appreciate all the advice. Its a good feeling to know these feelings I have are normal and, maybe, expected.

[newleaf09]

While 1b's have been considered a little more difficult to treat in the past, that does not apply to 1b's with low VL.  Several studies have shown that 1b's with low VL (and depending on which source you read, <800K is low for 1b) are MORE responsive than other geno 1's.  There is a reference to it in the AASLD practice guidelines and I probably have the original Italian study the recommendation was based on around here somewhere.  If you clear the virus within the first 4 weeks, there's evidence to back up treating for 24 wks instead of 48 and achieving SVR.

VL's can jump around.  I was a 1b and had VL at 49,800, then 88,100 3 weeks later, then 275,000 2 weeks after that.  Would it have gone up or down 3 weeks later? I honestly don't know if any pattern is apparent for which way it will jump or what it was during the 30-odd years I was undiagnosed.

You will find that you can live with dust kitties and unwaxed floors, etc if you just feel too lousy to get up and do anything about it.  My husband did not do much but unload the dishwasher but he did take complete responsibility for getting us fed and he came in and cleaned up my dirty dishes and trash when I was too sick to do it myself.  I was (as a low VL geno 1b) super responsive to the IFN and on a 3rd drug, so think I may have gotten sicker than I would have without the third one.  You need to just make rules, like I am no longer doing anyone else's laundry, I am no longer 'on call', I am no longer carrying anything for anyone else or standing in line.  If you want it, do it yourself.  You just take care of the mess later and don't stress over it.

[WriteItDown]

Shoot, I'd also really consider waiting for the protease inhibitors to come out, probably in 2011.  Your damage is minimal and the recent news on Telaprevir claims really high SVR rates (I think 80-90%).  The treatment duration is half the time of SOC.  But I definitely wouldn't want to discourage you from treating if you really think now's the time.  Good luck whatever you choose!

[nygirl7]

So I need to make things easier for the family and get them more willing to help out around the house. "

Believe me a lot of us other mommies sure get that one ;)

I don't know how old your children are but mine were about 14 & 16 when I started tx about five years ago and while they might not have been the world's biggest help they sure were understanding.  The fact that you are trying to do this for them makes a big difference I think...they really supported me and understood when I didn't feel so hot.

Of course......using lots of paper plates and cups and take out helped quite a bit :) and they didn't seem to mind that too much at all.

[chuckles333]

It sounds like you're already well equiped for the challenges ahead. Having fatigue before Tx doesn't mean you'll have a rough time with it. An understanding family, in any case, is real important. If your viral load is low and your liver damage is not severe and not progressing too rapidly and your liver enzymes are not drastically high, maybe you should consider waiting for one or more of the PIs to come available. These ostensibly will greatly improve your chance of a successful Tx and some are close to being approved. Just a thought.