Hep C Discussion Forum

Canuck · Guru

RE: Hello, New to the Forum

kozanne · Member

Too funny! A sweet tooth is something I never really had, but when I was doing the peg-intron/riba, all I wanted and all I could keep down were those horrible Jack in the Box tacos [even the LETTUCE gets fried] and ice cream. Oh, and fresh roasted chiles, as hot as I could find them.

I personally am hoping to get addicted to Baskin Robbin's Jamocha Almond Fudge this time out.....

Had the Fibroscan today, plus an ultrasound of the whole belly, including kidneys. Did not hurt too badly, just feel like I'm tight and sore on my right upper quadrant. Went in to work when I was finished.

Will probably be back here with the test scores before the week's end.

Tig · Admin

I'm a walking Neupogen success story. If it wasn't for that I would've been living in isolation for months. As it was I spent a good deal of time confined to home until my white count recovered enough to leave the house. I took 3 SQ injections per week for months. Ribavirin typically causes hemolytic anemia, which affects the red blood cells. Without the addition of Interferon this time you hopefully won't experience the same issues.

I will tell you one thing to watch out for with Sovaldi backbone treatments, they have a way of sparking a nasty sweet tooth! My initial recommendation is to find your nearest Dairy Queen and see if they will deliver! They have some excellent new Blizzard flavors and I'll be glad to test all flavors for you biggrin

Canuck · Guru

Good for you kozanne. Dottin i's crossing t's, arranging fibroscan, getting those prerequisite A/B vacs done. All boxes ticked and in order. You are doing the right thing!. You will never be sorry for the cure you are about to attain. You will stay strong and are brave enough get through this waaaay better than you might be doubting right now. We all give in to the "trepidations", the fears of the unknowns at the last minute, when at edge, when we are just about to jump in. Why should you be any different? Having "more bad days than good", for a while now, is "wearing" to say the least, the pressure of just packing this burden of HCV, being worried about our health/future for a long time, worry of the treatment ... it culminates, it conspires against you to undermine your confidence, it can shake the strongest. At one point (in the waiting, waiting, waiting to find out if I was going to get the treatment I had to work for) I can tell you I had at least one major melt-down. Feeling unwell, and the additional stress on top, feels weakening. Know, you have your head on straight, you are a brave strong women, this, and having your good husband, nice boss, and docs who will take care of you (and with all us here too, to help as we can) you are going to do great! Your treatment is going to be the best thing you could possibly do for yourself and your health! I felt quite some relief (despite any trepidations) when I finally learned I WAS "in" and was going to receive tretament, I hope it is starting to feel a bit like that for you too.

I admit when I first approached this site, I did so with a degree of reluctance, as i thought to myself, I did not need a "support group", turns out I was dead wrong about my pre-conceived ideas of what this place was and everything it had to offer - knowledge, good info, some really nice people here, valuable experiences to draw on, and we are just regular people, just like me and you, willing to share and help one another as best we can. (now - any of you who know me well, don't you go blowing my being-a-"regular person"-cover!, and reveal to kozanne how twisted and warped I really am - I am trying to reassure her all will be OK!)

In this tough ole world this is a nice place to fall into, I have found. I'm glad you landed here.

Please do let us know what your ALT/AST/bilirubins have been, past or present. As well, any past Fscores, and what this current fibroscan Fscore shows. Have you had any recent or past abdominal ultrasounds or any other imaging done, if so, what did the abd. info reveal? How's your spleen? Ever any acities? Have they ever said you were cirrhotic? What IS your platelet count?

You worry about your platelets, so, just ask your doc outright about this, to better gauge what his concerns would be with your platelets, and not just yours. You have to be able to communicate with him regarding ANY of your trepidations, from regime choices to side effects. You can always ask to be squeezed in for an extra appointment with him, or, ask for a "phone consult" with him, or, relay Q&A's via his nurse (if that is all you can get), to try to resolve ALL and ANY questions you might be having, before you start. This might make you feel better about things.

Hang in there! C.

Shadowfax · Guru

Welcome to the forum.

It's great you found it because nearly every answer you could want will probably be found here from people who have either been there, done that or going through it right now.

This time your TX is different. You almost certainly will join so many of us here and be cured. Please keep us posted with the progression. It would be great to see your LFT's as well since they may choose to not monitor the virus until the end of TX as in many cases. Your LFT's will however tell the story so very well.

All the best.

SF

kozanne · Member

Getting the Fibroscan done tomorrow, also vaxing for HepA and B.

Voice mail from my doc on Saturday, Harvoni/Riba was already submitted to the insurance co for approvals. Since doc was 'catching up' when he called me Saturday, I will assume he submitted the order and got the insurance paperwork done sometime over the last week.

I'm not thrilled about the Riba. Platelets are already a little low, so I may get stuck [pun intended] injecting Neupogen or something similar if they drop low enough.

Doc said cure rate is in the 90 percentile range. I'm going to believe for 100%.....

So it begins, I guess. Over the last couple weeks, I think I'm okay, I'm not scared or anything, then all of a sudden I burst into tears for no reason. I don't want this thing to run my life anymore.

Canuck · Guru

Hi kozanne,

Welcome here, I meant to say hello yesterday.

I am glad to know you are going to "get it done", this time around, on these spectacular new DAA's.

I cannot add too much more to what the folk around here have already said. Sorry for your prior failed int/riba treatment in 2005.

I have to thank Ragdoll, for bringing up the topic of sof/vel/vox (Epclusa+VOX), IF it does become available for the market as soon as this summer, and if it is not too late for you and your doc to consider this regime over the Harvoni+riba you mentioned ... you would be a prime candidate for sof/vel/vox (being that sof/vel/vox is so pan for all GT's, and is a riba-free triplet designed expressly for "treatment experienced". Sof/vel/vox has proven itself for relapsers, even cirrhotic relapsers.

I would definitely exhaust any "possibility" of getting the Epclusa+VOX (if it turns out to be an optional choice over the harvoni+riba), only because it is an excellent regime, and, the third drug VOX (a NS3/4A) may be easier to tolerate than the riba. Harvoni/riba also has a very excellent track record. Regardless, the harvoni/riba triplet will certainly do it for you, so you've got it made either way.

Please do ask your doc about sof/vel/vox. Up until now epclusa has been given with riba (when a triple was thought needed), but with this new supposedly imminent launch of the VOX in the sof/vel/vox triple, this will now provide an option to doing riba. I got cured on a sof/vel/vox trial with only 8 weeks of treatment, and they had me pegged at F3 and then F4 just before SOT.

Glad you got your fibroscan lined up. Please do keep us posted on what your "Fscore" is from the fibroscan (and any of your labs would be helpful info) - have you ever had any prior Fscores assigned to you?, and have you had an abd. ultrasound, or any abd. imaging (past or current) and do you know what those results are?

I am so glad you have a husband and boss like that, main supports are key to have, and, please know, you can depend on us too! My partner and my docs were the only people to know I had HCV and treatment, my "team", and this kind place got me through just great.

I'm looking forward to your next post! smile C.

RAGDOLL · Senior Member

Welcome to the forum..... you sound a lot like me. I did not tell anyone I was on treatment and the only one that really knows is my husband and my old boss. I have been retired last 10 years. This is a great time in your life to have treatment as most plans are easy to tolerate. I had just had a hip replacement a month before I was offered a Trial treatment plan and it was pretty uneventful for me. Like taking more vitamins. Its been 2 years + for me and all is well, the virus is still gone! FYI, Gilead is coming out with a new drug 3 DAA's sometime this summer SOF/VEL/VOX... maybe you could dodge a treatment with RIBA... check with your doctors.

Keep forum posted on your treatment. Be sure to drink lots of water. This is a great group of people on this forum and you can ask or share anything and they will help you thru this time.

Regards and God Bless ! CC

-- Edited by RAGDOLL on Tuesday 11th of April 2017 11:30:58 AM

kozanne · Member

ETA: I messed up somehow, this was meant as a reply to Tig.

Basically, I only told those parties I thought might experience a more 'immediate' impact from my going into treatment.

My family does not know I am starting treatment. My parents are still alive and kicking [mid 80's], but I don't want them to have to think about this, and my mother will be a worry wart. As for my kids, they are grown up and I don't want them fluttering about me when they need to be getting on with their lives.

I did tell my husband, a wonderful man who would move heaven and earth for me. When I came home from my first appointment and told him how much better the treatment was expected to go, he cried. God bless him, he was much more emotionally worked up about it than I was, but that's how it is with us.

I also told my employer, who is quite supportive. I wouldn't have done so, except that if I have a bad day or two and need to work from home in my jammies, I owe them a reason why. The first thing out of my boss' mouth was 'what can I do to help you?'

I'm very humbled to have both a supportive husband and employer.

I'm kind of a 'never complain, never explain' woman, and joining this forum is about as close as I will get to a support group. I detest being sick, for the sole reason that it interferes with my life! I've always had a tendency to ignore illness and just take the 'suck it up buttercup' position when I'm not feeling well. But the days I don't feel well are starting to outnumber the days I feel good, so I had to do something about that.

-- Edited by kozanne on Tuesday 11th of April 2017 10:28:03 AM

wendyo · Guru

Welcome from another 1a. I also did the old meds that you did and this is much better. Just remember to HYDRATE. If you get tired of plain ole water add fruit to it, decaf tea is great and eat watermelon. Listen to your body, when you are tired, rest. Use this forum more so than google as you do not want to make yourself crazy. (we all have done it)

wendy

-- Edited by wendyo on Tuesday 11th of April 2017 06:36:34 AM

Observer · Guru

Hi Kozane,

Welcome to the forum.

As Tig wisely said, hydration seems to make 'all the difference' when it comes to managing the side effects.

The ribiviron *can* be a bit tough, but if you can hack it, it's worth a few weeks of fatigue to kill the nasty virus forever. I was pretty affected by dropping hemoglobin in the last month or so but still took my dog out for both his 45 minute walks every day, shopped, cooked and made art. Just a bit slower! and its important to ask for help from your friends/family. After you are cured, you will feel so much better.

A

Tig · Admin

Hi Kathy,

Welcome to the forum! It's a good group of people that care and I'm sure you'll agree. Others will be along soon to say hello.

Your history sounds very familiar. The same things have happened to many of us. The treatments have changed, for the better I might add. Harvoni is uber effective, that's a given and has a very low side effect profile. The Ribavirin is going to present you with it's own set of side effects, but the dose administered now isn't as high as it was when you did your last treatment. Your doctor will spell that out. If you start to have some unpleasant but temporary sides, we'll be able to suggest remedies to make things more tolerable.

When you have your fibroscan results and any additional blood work, let us know. Better yet, add them in your signature line and you won't have to answer the same question repeatedly. It helps us provide better informed opinions as well.

I would not expect you to be unable to work during treatment. You may want to ask your family to help out a little more, because you'll tire more easily. Do they know you're starting treatment? They can be a great help!

Side effects are usually minimal, but headaches and fatigue can be bothersome if strict adherence to proper hydration isn't followed. 3-4 liters of water per day minimum! A good diet and plenty of rest are vital as well. Don't worry, we won't steer you wrong and will be here to support you to the finish line. You got this!

PS: Give Google a pass for the time being... wink

kozanne · Member

Diagnosed 1a in 2004, did interferon and ribavirin thru 2005, it was hell. Did not clear the virus. Started out at 5M, ended up at 100K. Figured I would not go thru that treatment again, so I hoped technology would find a better way and when it did, I'd try to clear this thing again when I was ready.

New count is 3.3M, have been to the liver doc and will be starting Harvoni with Ribavirin for 12 weeks. Getting the fibro scan scheduled sometime this week as soon as I make the call.

I've spent the last couple of weeks just Googling around, seeing what the treatment will be like, how I will feel, etc. I've got a family that depends on me, I'm the primary breadwinner, and I just want to be able to get thru the treatment without letting anyone down. Googling around, it seems like you can find as much negative as positive when it comes to what it's really like to go thru this treatment regimen, so I decided I'd sign up to a forum where there are people who are the boots on the ground where this is concerned.

So....hello.

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