Hep C Discussion Forum

BeccaJune · Senior Member

RE: A Step Closer to Treatment

Ron Gilbert · Senior Member

Your Dr is talking about Telaprevir, it is a new 3rd drug that is added to the existing drugs Pegylated Interferon and Ribavirin. There are some people here that are already taking it.

You must be a Genotype 1 or your Dr would not be adding the new drug. It is considered a "triple theropy" with all three drugs together.

The new drug was not available when I started tx so I used Vitamin D3 on my own as a 3rd agent and it worked very well for me fortunately. I'm very grateful to be UND @ my 4 week PCR. It is considered a "rapid response" and gives me the best possible odds of SVR.

Hope this helps. Ron

beautiful_wrath · Veteran Member

Goodmornin' Greg, BeccaJune, Randy and Ron. I feel like I'm getting to know all of you folks. I was unaware of the vitamin D thing and will definitely educate myself. Thank you for mentioning it. Becca, My dr too warned me of the greater risk with this tx of the white blood counts dropping too low. It's good you are going ahead of time to get yours looked at more in depth since they are already low ish. I think my dr is leaning towards the Tepre-whatever for my tx. Is the only difference who makes it?
I hadn't even thought about loading up on fruits and veggies. I don't think my mind is thinking good right now. Randy, I definitely stepped into the overload area two days ago. I paid for it all day yesterday with head and stomach aches due to the stress I guess. I have got to learn to settle down and to toughen up. I'm actually very strong on the inside normally but lately this has me thrown for a loop. I have noticed you do Eastern meditation. I don't really know what exactly it is but I have decided that this is going to take some work on my part to chill myself out so I may look into it. I am an avid gardener, a walker, a lover of animals and a fishergirl. Am thinking of bringing out my paints that have been tucked away for way too long. I may paint my moods throughout my treatment as mementos.
Ron, thanks for that link. I'll study it and then share the knowledge with my family and doc. I really need to eat better and have been aiming to but never quite doing it, now is the time. Thank you all so much for these nice notes to wake up to today. I think my biopsy will be next Thursday but will find out today.
Everyone please try to take a moment today and just look at the sky and breathe deep and think of how lucky we all are to be here today. I will do the same.

talk soon, ~wrath

Ron Gilbert · Senior Member

Hi Wrath and Becca,

Here is the link to the Vitamin D3 study, in case you missed it.

http://www.hivandhepatitis.com/2010_conference/easl/docs/0518_2010_b.html

Amazing info, and I feel like it helped me.

Ron

Hep Me · Senior Member

Hi wrath, before I read any of the other responses, my first thoughts to your questions were to learn about the disease and also try to relax. Pretty much what the others have already said. We are all a bit different in the way we handle things - like the stress of finding out we have a nasty disease.

For me, there was this need to know the basics of the disease so I could understand what the doc was talking about (thus I joined this forum). But it was also important that I didn't do the information overload and drive myself nuts before treatment even started. So I made sure I took time out each day to relax in some way. Sometimes I found it helpful to play my guitar, enjoy the outdoors, meditate, or even watching nature shows on TV or stargazing at night. If you have any hobbies at all that you love to do, you might find it helpful to spend a little time on them a few days a week. painting, gardening, etc. Just some thoughts.

Take care,
Randy

BeccaJune · Senior Member

Wrath,

I'm in the same boat with you waiting for the new tx (Incevik) to be approved by my insurance. The "specialty" pharmacy called me May 24th to start the insurance approval process, so I am just waiting.

My DR office called today and he is sending me to a hematologist because my white blood counts and platelets are low. I have read that tx causes them to drop, so he is probably concerned with them already being too low. I hope it doesn't effect my ability to go on (and stay on) tx.

I like Kirstin's suggestion of the vitamin D. I've been trying to eat lots of veggies to try and boost my immune system, but I don't know if it's working. I also like the idea of getting out for walks to air out the cobwebs and keep the energy up level up.

Good luck to you!

Becca

Greg · Guru

Hi wrath,

Not much more I can add to what has been posted all great advice indeed, the only thing I can add which I think is also important is that you need to listen to your body when your on tx, if your tired, rest you'll know what to do. You'll be fine.

Take care,
Greg

James10500 · Guru

"James, in defense of Wrath- uh, it's a really big pill to swallow when you are diagnosed with serious disease or illness."

Yes moo, I was diagnosed with HCV in April of 2010. I have a pretty good idea of what she is going through.
It's just my opinion.

Cheers,

James

beautiful_wrath · Veteran Member

Goodmorning James. Funny you wrote that because that's just what I'm going to do today. I'm doing nothing medical today because I'm on overload. My brain just can't take in any more info right now so I'm not reading today, studying hep c, making calls and appts, nothing. Going to walk my dog before it gets too hot, do chores, work in yard and actually try to push away my hep c thoughts just for the day. Like Kirsten said, I'll have plenty o' time for that later in the game. Hi Kirsten and thank you for the support and wisdom. Goodmorning Moocow, like you I find myself in very deep thought lately. Contemplating the meaning of everything, mentally categorizing things in my life in order of importance, thinking about my family members and my one dear child. Soon I will tackle the Knowledge Base here again for more info. LIke you, I wondered about the fluctuation and he said yes they do fluctuate just not that much and not that high in his previous experience. He wants to see the liver itself before we make any more guesses on this. I'm hoping that it's just a spike or fluctuation and not something else I'll have to fix in my body. One battle is enough, thank you very much. PJ, you're right, the anticipation is what is so hard. I told my dr that once I had the first injection under my belt and was off to the races, I'd be better. The meals sounds like a good idea, I think I may do that some for my family. Like you said though, trying to anticipate all of this is rather difficult. Many times I make plans but then life doesn't follow them! Thank you for the support so much. I told my doctor about ya'll and this site. He and the nurse practitioner thought it was a great asset since many of you are either doing tx or did tx. I told them how you all help each other out and were even helping me too. Thank goodness for my computer, lots of really cool people live in it! haha
Please have a good day folks and I wish you peace. Talk soon.

Your friend,

~wrath

PJ · Senior Member

When I thought that I was going to get into a study last Fall, I went into full cooking mode, making a whole bunch of meals to freeze for nights I didn't feel like cooking. Unfortunately I didn't get into that particular study as it never happened, and eventually I had to eat all of the food. This time, I didn't have the energy to do that again, but I tried to make a large meal (I live alone) once a week or so, and freeze the extra portions.

If I were doing it over again, I wouldn't worry so much. It's silly to try and anticipate what you may or may not feel like eating as your appetite will change while on treatment. I still do try to make a pot of soup every week, and take that to work for my lunches.

A good mental attitude counts for a lot, and it seems like you certainly have that. This IS a battle for sure, but I believe with the addition of the 3rd drug especially, it is one that more of us will win.

I can tell you that the anticipation about everything was much worse than the actual treatment, first shot, etc. And that you will have good days and bad days. Try to rest on the bad days, and distract yourself with comedy or movies, etc. My sofa now has sheets on it all of the time. Enjoy the good days, but don't over do anything, slow and easy is the key.

Best of luck and lots of hugs,

pj

Kirstin · Senior Member

I have to agree with James.. also Gail.. It is a difficult time of your life, I know that it was for me, for us all. I think we all go through coming to terms with your illness, wondering what you could have done differently, when it could have happened etc etc Also how well the TX is going to treat us. This is where I agree with James, try to give yourself a break from it for now. You have plenty of time for that later, believe me ..

You may want to look into starting with the Vitamin D now though. Start working on the immune system now. Just a thought..?

Moocow · Guru

Hi there, Wrath and welcome to our humble abode-

James, in defense of Wrath- uh, it's a really big pill to swallow when you are diagnosed with serious disease or illness. I was in a state of shock and was just going through motions to get through the day. I was in deep thought, emotional and all over the place.

Wrath, what you are feeling is really normal- you are sick. Plain and simple- but you have a chance at getting well again, ridding yourself of the virus.

I would suggest taking walks in the evening to help relax, if you are a "soaker", go soak before bed (beats sleeping pills).

Research your disease (or shall we say, "Our" disease of which some of us yes, went for treatment and cleared. Some, not as lucky and some are on round two or three.

Ask questions, lots and lots of questions. Read the Knowledge Base section here- lots of information and links to where the information was posted.

I showed him how my ALT and AST had jumped up 60 more points from the reading we did last month. He voiced concern that something else may be going on with me as well and stated in his years he usually didn't see enzymes that elevated for hep c patients.

I wonder if your doctor isn't reading the medpubs- it is normal for enzymes to fluctuate when infected with chronic HCV. I think he's basing his theory on his own experiences. Just sayin'.

James10500 · Guru

I'll tell you EXACTLY what to do. Give yourself a break from it. Your doing everything you can the wheels are in motion. Forget about it and enjoy life free of worry for a bit. You deserve it.

Be well,

James

beautiful_wrath · Veteran Member

Hello everyone. Hope this note finds everyone in good spirits and that you enjoyed your Memorial weekend.

Wednesday finally got here and so did my appt. with liver doctor. I showed him how my ALT and AST had jumped up 60 more points from the reading we did last month. He voiced concern that something else may be going on with me as well and stated in his years he usually didn't see enzymes that elevated for hep c patients. He ordered a battery of tests, some just normal stuff needed in order to do the liver biopsy he ordered. One test is for the viral load. He said he's going to get a very good baseline so that we can get the new treatment going. I'm going to be his very first to be on the new one and he's very excited although he's treated at least 1000 with previous treatments. They are also getting my insurance in the works as well. They say to expect 3-4 weeks to get everything in order. Biopsy will likely be late next week. So now I wait.

What else should I do at this point? Anything? Should I be doing something specific? I told him I was gearing up for a battle both mentally and physically. He liked hearing that. I told him I was going to fight hard. I've been uncharacteristically emotional the last few days as I've been considering my life. This is a lot to take in and I need to make peace with it. I am confident that in time I will. If you can think of anything else I should be doing at this point, please let me know and as always, thank you for reading this somewhat scattered rundown of my day as a hep c patient. I know you all know where I'm coming from and that in itself is a comfort. Talk to you soon.

Goodnight,

~wrath

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