Aa
biopsy results
I got my test results back yesterday and it doesnt look very good. Genotype 1a grade 3 stage 2. I will be starting treatment when meds get approved. I hope I can stay as positive as all of you. Even though I am a nurse this is a whole new area for me. I guess I will not feel so down after it gets started. Doc says have to treat for a year with no gaurantee.I live in a rural area so wont have any support groups, Have a husband hes okay but thinks maybe I'll get all the side effects from reading you guys posts. I am thinking I'll get them from the tx. well I just made a joke it must help to talk about it. thanks for being here
My first shot using a vial was my first shot of Peg. I was supposed to have the prefilled syringes, but the pharmacist filled it wrong. Plus they gave me huge needles 1" long, gauge 22. I was really shaken and literally shook thru the procedure but I did it. Now with the Procrit and Neupogen, I have no problem.
I find they are really stingy on the Procrit - I can barely fill the syringe past the 1cc line - barely enough to thump it and get the bubbles out and still end up with 1 cc. The other thing is, if you do it really right, you use 2 needles - one for puncturing the rubber on the vial and drawing up the fluid, and then you change out tips (needles) thump out the bubbles and you have an unused needle to inject. I was never good at that, and usually ended up with about .9cc of injectables. So I use the insulin needles that the tip does not come off of. Therefore, the injection into my skin is not the first use of the needle. However, the needles I use are so small that I rarely have a mark.
You are right - it is so nice to have the experience of someone ahead of us. This board has helped me tremendously through the year. Thank goodness a lot of people stick around after finishing.
kathy
I find they are really stingy on the Procrit - I can barely fill the syringe past the 1cc line - barely enough to thump it and get the bubbles out and still end up with 1 cc. The other thing is, if you do it really right, you use 2 needles - one for puncturing the rubber on the vial and drawing up the fluid, and then you change out tips (needles) thump out the bubbles and you have an unused needle to inject. I was never good at that, and usually ended up with about .9cc of injectables. So I use the insulin needles that the tip does not come off of. Therefore, the injection into my skin is not the first use of the needle. However, the needles I use are so small that I rarely have a mark.
You are right - it is so nice to have the experience of someone ahead of us. This board has helped me tremendously through the year. Thank goodness a lot of people stick around after finishing.
kathy
Great tip on the insulin needles thats more my speed, changing needles, is just one more thing for me to frett about, definitly will go for the one needle does all!
Nurse: I can so identify with your post. I just want to get things going so I can move forward. When you have a job that helps others all day long it's easy to be cheerful and positive, when you're the one with a disease it's scary. At least you have a husband who is a caretaker also. My husband isn't even remotely connected to the health care industry but is great at taking care of me. I get my biopsy in about 4 hours and then I am one step closer to getting better. I just view this all as steps to getting better, hopefully cured but if not I'll deal with that later. Good luck with your treatment, let us know how it goes.
Paris: Once again you have me crying and cracking up. I love to read your responses, I bet your journal is awesome. I really like the journal idea, if only I can remember to do it. As far as ice cream, you DO have your priorities straight with the whole freezer thing. I too prefer chocolate almond and will splurge on klondike bars as my back up. Thanks for sharing.
Paris: Once again you have me crying and cracking up. I love to read your responses, I bet your journal is awesome. I really like the journal idea, if only I can remember to do it. As far as ice cream, you DO have your priorities straight with the whole freezer thing. I too prefer chocolate almond and will splurge on klondike bars as my back up. Thanks for sharing.
I thought my husband was the only one who thought that way, so a couple of times he caught me crying while i was reading a moving thread on the forum, now when he sees me on the forum, he goes oh no you going to cry again where was he when so many times i have laughed my heart out. Ohio nurse your going to be just fine,at least you wont have to watch the video on how to give yourself a shot, and you know how to read labs, your already one up.......................
Hopefully you will be able to continue with the hair color. Mine was highlighted, still is I suppose. I haven't had it done since I started tx in March. That is a record for me! I did have my outlaw color it before I went on baction. It is fine for me at this point. I figure it is the least of my worries.
I ate ice cream by the gallon. I have cravings like I am pregnant. I may not have lost, but I haven't gained anything. I guess we really need to think about those kind of postive things! LOL
I ate ice cream by the gallon. I have cravings like I am pregnant. I may not have lost, but I haven't gained anything. I guess we really need to think about those kind of postive things! LOL
Yeah the doctor decided I didnt need the teaching on shots but even though I have give hundreds of shots I have never given me one. It will be harder then you might think. The test result stuff is good the doc gives me copies I think I'll make a journal watch my success or failure with the treatment.If I get bad side effects I think I'll take it out on my husband then blame that on you guys with the mind fog thing lol not really he is a good guy overall and hes a nurse too so if all else fails he can give me shots
cant wait for all the ice cream. I practiced yesterday after getting all the info from the doc I had a large hot fudge sundae for dinner it helped.
Thanks again for comments and support I really need to get to bed and maybe sleep. will check back soon
Good luck to you, I started a journel before I started tx.
reason is due to my other issues (bi-polar) I am very well
maintained on my meds since finally diagnosed appropriately.
well anyway...I started a journel to write all the positives things...you wouldn't believe how much fun this can be....
my brother had just passed away and I was so sad from that,
and he had a humor about him that would get my so hysterical, well we would have emails then sign them with initials, & we would have to figure it out, it would be based on whatever was involved with that particular email. for ex: I might go on and on about how I'm the youngest, was picked on terribly by 3 older brothers but....
sos..
that would me 'still oldest sister'
so no matter what, I am the only sister, but the oldest..
anyway...I do tend to rattle, but it is these little things, that give people pleasure & whatever yours are ...write them down so you don't forget.
My daughter had phrases 'you can't go wrong with yellow'
whenever I get down...I look at the sun...yep, you can't go wrong with yellow..
again silly but this journel of thoughts was enough to keep me going, I had pages and pages of silly stuff.
and again I hate to go on and on, but my life has been hard....not to say no one else hasn't, but what ever else is going on, there is somewhere those silly little phrases, songs, memories, whatever, that was my type of journel.
then when I did my 2nd shot and saw blood, couldn't find help, but found this site, I was now in 'hep c heaven' with a new family.
I have felt that my sx were not near as severe as others, & for that I felt sad for others, because the sx I did go through were hard. My fiance' as supportive as he can be, well, it's hard to be supportive to a 'witch' but if your sad, well that's different.
so again sorry for so much, but good luck, write some good stuff before tx starts, glad you found this site first. I wish I had.
good, no, great group of informative supportive people here...
reason is due to my other issues (bi-polar) I am very well
maintained on my meds since finally diagnosed appropriately.
well anyway...I started a journel to write all the positives things...you wouldn't believe how much fun this can be....
my brother had just passed away and I was so sad from that,
and he had a humor about him that would get my so hysterical, well we would have emails then sign them with initials, & we would have to figure it out, it would be based on whatever was involved with that particular email. for ex: I might go on and on about how I'm the youngest, was picked on terribly by 3 older brothers but....
sos..
that would me 'still oldest sister'
so no matter what, I am the only sister, but the oldest..
anyway...I do tend to rattle, but it is these little things, that give people pleasure & whatever yours are ...write them down so you don't forget.
My daughter had phrases 'you can't go wrong with yellow'
whenever I get down...I look at the sun...yep, you can't go wrong with yellow..
again silly but this journel of thoughts was enough to keep me going, I had pages and pages of silly stuff.
and again I hate to go on and on, but my life has been hard....not to say no one else hasn't, but what ever else is going on, there is somewhere those silly little phrases, songs, memories, whatever, that was my type of journel.
then when I did my 2nd shot and saw blood, couldn't find help, but found this site, I was now in 'hep c heaven' with a new family.
I have felt that my sx were not near as severe as others, & for that I felt sad for others, because the sx I did go through were hard. My fiance' as supportive as he can be, well, it's hard to be supportive to a 'witch' but if your sad, well that's different.
so again sorry for so much, but good luck, write some good stuff before tx starts, glad you found this site first. I wish I had.
good, no, great group of informative supportive people here...
thanks for mentioning the icecream,
just had mine for tonight.
I eat at least one cone of chocolate almond
and one icecream sandwich per evening.
that is a minimum requirement while on tx
or while preparing for tx.
Doctor Paris47 prescription, glad to see others
following the same prescription!
it's sad when you run out, and that it can seem like
the end of the world, so learn to stock up!!
one day the freezer door did not get shut tight.
by the time I came home everything ruined, could have
cared less about the waste, or the mess,
but I was so tired, and wanted my icecream
...needed to muster up the energy to go to the store..
now I am constantly checking that freezer door to make
sure it is shut tight.
I KNOW MY PRIORITIES.
just had mine for tonight.
I eat at least one cone of chocolate almond
and one icecream sandwich per evening.
that is a minimum requirement while on tx
or while preparing for tx.
Doctor Paris47 prescription, glad to see others
following the same prescription!
it's sad when you run out, and that it can seem like
the end of the world, so learn to stock up!!
one day the freezer door did not get shut tight.
by the time I came home everything ruined, could have
cared less about the waste, or the mess,
but I was so tired, and wanted my icecream
...needed to muster up the energy to go to the store..
now I am constantly checking that freezer door to make
sure it is shut tight.
I KNOW MY PRIORITIES.
thanks both of you guys for your response and hope youll both be with me on this. Does it sound like im afraid to be alone with all this? Yeah cause I am. But I really like the skinny part I thought about eating everything I can and getting fat but then what if weight lost is the one side I dont get. I better hold off on eating the whole house. I have long hair and color it about every 3 weeks Im thinking of cutting it short and frosting to let the gray come in without such a shock What do ya think?
Good luck with your bx. Please post later and let us know how it went. I'll say a prayer that you will have a low score on the stage and grade.
Thanks for everyone's input. I have always looked for the good in people and the beauty in the world, it just seemed easier not to focus on the other for me even though I know alot of people just the opposite of me I like me alot better am believe I am much happier. Hope to maintain this attitude. I am sending all kinds of hopeful feelings toward Ladybug that her biopsy goes well and the results are minimal. I wasnt scared about the hep c, have known about for 10 years old dr never felt a need to address it because enzymes always ok, Now I understand that was stupid on her part and denial on mine. When I changed doc's ironically the enzymes were elevating, it was the 5 mil plus viral load that made me realize that I have this disease and It could kill me long before I'm ready to go , havent had time to smell all the flowers yet. The 1a genotype scared me pretty good so I am paying serious attention no more head in the sand stuff. I plan to fight this with all I got. I am going to buy lots of ice cream today.
I continued coloring my hair during tx and did not cut the mid back long strands. My dr suggested it, but I couldn't. It thinned out considerably and it looked much worse when I trashed it because it was long. The length made it looked like a lot more hair had fallen out. It can be traumatic for those of us with long hair, but you won't go bald. My first GI suggested biotin, zinc, vit e and Nioxin hair products to prevent huge loss. SOmeone here mentioned another hair brand that seems good. I did not want to look worse when I looked in the mirror and saw all the gray coming out, so I colored thru tx.
If You are on Pegasys, ask them for the goodie bag they offer. It contains many cool things that include a journal. You can also register at Roche's site and keep an online journal. I never wrote anything there, though.
Another cool side: long, very long eyelashes to compliment the Mr spock eyebrows.
It is a long, tiring tx, but with a good pain medication and epogen when needed, you can complete it successfully.
from a former 1a.
If You are on Pegasys, ask them for the goodie bag they offer. It contains many cool things that include a journal. You can also register at Roche's site and keep an online journal. I never wrote anything there, though.
Another cool side: long, very long eyelashes to compliment the Mr spock eyebrows.
It is a long, tiring tx, but with a good pain medication and epogen when needed, you can complete it successfully.
from a former 1a.
I'm very sorry that you have to go through this but just knowing that you aren't ALONE and you have people who REALLY understand helps so very very much~
I was shocked when I found out I was Grade 2 Stage 3. I didn't even know I had it and I just couldn't acclimate to the idea!
But I kept coming in here and realized how people in here seemed HAPPY even with a disease and worse liver damage than me. HAPPY! It really helped me to realize that while it's a FIGHT to kill these buggers...we are in a war TOGETHER and something about the sharing and caring helped me more than any drugs ever could.
You will find that the people in here will do ANYTHING they can to help you through this. They will let you cry and whine and laugh and freak out - and that really helps a LOT.
Take all the advice that you can and learn, learn, learn. The more you know the more you are able to help the doctors manage your care. I know you are a nurse - but when it's YOU it's a whole different story, so take notes if you have to. ;)
Best of luck
Hi, fellow buckeye. I haven't lived in Ohio for years but my heart will always be there. I am glad you have chosen to treat. Your biopsy indicates quite a bit of inflammation. Your doc is right that there are no guarantees, but if you are compliant, you should do well. The side effects will come and go. If you have a healthy immune system, you should do okay.
Cuteus is right about the eating. I don't know what I am going to do! I will take my last Riba pill on Friday. I have only lost 10# during tx -- all within the first 4 weeks, I think -- but I too have been able to eat almost anything -- altho to be honest, I eat overall less at meals. Still I will miss the high fat yogurt, iceream, cookies and cake.
AS far as support, this is a very lonely disease. WHether you chose to be out front or "in the closet" there is so much misunderstanding about the disease and lack of information available. So MH is the support system I had and I am very grateful for it.
I have a hair story-------I was looking at my hairbrush last week thinking -- why are there so many hairs in it (it is fairly new) - am I losing again? (most of my loss was about weeks 16-36). So I start cleaning the brush out and all the hairs are long and black (Cuteus, have you been using my brush?). Well, my hair is dishwater blond, and about 1 1/2" long. So my housekeeper has a new helper (with black hair) and all I can figure is that she used my brush. HOW GROSS! Needless to say, I called her and said NEVER EVER do I want that woman in my house again.
I had to clean house this weekend. Talk about exhausting -- the muscle loss and anemia --
best to you
frijole
Cuteus is right about the eating. I don't know what I am going to do! I will take my last Riba pill on Friday. I have only lost 10# during tx -- all within the first 4 weeks, I think -- but I too have been able to eat almost anything -- altho to be honest, I eat overall less at meals. Still I will miss the high fat yogurt, iceream, cookies and cake.
AS far as support, this is a very lonely disease. WHether you chose to be out front or "in the closet" there is so much misunderstanding about the disease and lack of information available. So MH is the support system I had and I am very grateful for it.
I have a hair story-------I was looking at my hairbrush last week thinking -- why are there so many hairs in it (it is fairly new) - am I losing again? (most of my loss was about weeks 16-36). So I start cleaning the brush out and all the hairs are long and black (Cuteus, have you been using my brush?). Well, my hair is dishwater blond, and about 1 1/2" long. So my housekeeper has a new helper (with black hair) and all I can figure is that she used my brush. HOW GROSS! Needless to say, I called her and said NEVER EVER do I want that woman in my house again.
I had to clean house this weekend. Talk about exhausting -- the muscle loss and anemia --
best to you
frijole
Frijole just did the procrit today feel a little shakey, but i cant tell if its the meds or nerves did you ever get any sides from procrit, also my 6yrold busted out my 9 yrolds bonding on his 2 front teeth lil bro broke about 2yrs ago playing star wars swords, lord if it aint one thing its another so the rest of the day ive been begging dentist to get him in before school starts next week, he is so shy and to start school with vampire fangs will devestate him.....
cuteus- my 19yrold girl pulled me aside at her birthday party, and said mom whats up with those eyebrows , im sorry but you really need to do something about them...well excuse me ive been on poison for 9 months, oh thats not any excuse, hummm, maybe shes right, but ill never let her know that, any way im afraid to do something with them, im afraid it would be a prelude to a more uglier thing.......
cuteus- my 19yrold girl pulled me aside at her birthday party, and said mom whats up with those eyebrows , im sorry but you really need to do something about them...well excuse me ive been on poison for 9 months, oh thats not any excuse, hummm, maybe shes right, but ill never let her know that, any way im afraid to do something with them, im afraid it would be a prelude to a more uglier thing.......
I don't think I get sides from the Procrit, but it is possible. I do sometimes with the Neupogen and usually a Tylenol works. I find the PRocrit drys me out and make sure I drink extra water before and after the shot. I usually do mine late - evening time. Did it burn? Let it warm up first. Let me know how long it takes to take effect.
ha ha ha - sorry for my laughing but, oh can I relate to the teeth story. So it is Star Wars, still, eh? When my son was about 4 (he is 25 now) he cracked his front teeth swinging from a rope --- by his teeth -- Harrison Ford style in Raiders of the Lost Ark. Lots of fun, but sure can be expensive. Sounds like you have got your hands full. I admire you txing with young'ens.
I finally started cutting my eyebrows when I started pulling out hairs OVER AND INCH LONG. What about nose hairs? I had to buy one of those little rotating thingys. What a mess, eh?
kathy
ha ha ha - sorry for my laughing but, oh can I relate to the teeth story. So it is Star Wars, still, eh? When my son was about 4 (he is 25 now) he cracked his front teeth swinging from a rope --- by his teeth -- Harrison Ford style in Raiders of the Lost Ark. Lots of fun, but sure can be expensive. Sounds like you have got your hands full. I admire you txing with young'ens.
I finally started cutting my eyebrows when I started pulling out hairs OVER AND INCH LONG. What about nose hairs? I had to buy one of those little rotating thingys. What a mess, eh?
kathy
Oh its so nice to talk to someone who has already been were im going, the shot was given to me in the arm, the fat not muscle,and it went really smooth of coarse, wait till i have to shoot my own belly, they will teach me over the next 2 weeks to shoot myself , i have the prefilled needles for the peg and procrit you have to pull youself, so thats something im going to have to learn.
them boys just play to ruff, i bet if they took a pole it would be mainly those boys who have to run in to get thier front teeth fixed, one of my older boys also has a front tooth bonded from a bicycle accident.
take care and let us know how you are doing off
the meds , how long it takes your whites and reds
to bouce back, my nuets have been staying around .9
on thier own, hope that dont change....
Blessings angie
them boys just play to ruff, i bet if they took a pole it would be mainly those boys who have to run in to get thier front teeth fixed, one of my older boys also has a front tooth bonded from a bicycle accident.
take care and let us know how you are doing off
the meds , how long it takes your whites and reds
to bouce back, my nuets have been staying around .9
on thier own, hope that dont change....
Blessings angie
not the best results, but not the worse either! You have a good 50 to 60% shot at SVR, depending on whether you can clear the virus early in tx. Even if you do not clear by wk 12, extending tx can cut your relapse chances significantly.
of course you are going to get the sx! that is the best part of tx, especially the one where you can pig out on ice cream and cakes and not gain an ounce!
of course you are going to get the sx! that is the best part of tx, especially the one where you can pig out on ice cream and cakes and not gain an ounce!
So sorry to hear your bx results were not as good as one would wish for. I am always worried mine are bad, but since I didn't have a bx before tx, I have no idea. i think it is good you know what you are dealing with. I feel like Mine is really bad sometimes and it makes it hard.
You will do fine on tx. It is doable, even with the sx. Hey, look at me/ I am the sx poster child, it feels like anyway. Many have none. I think waiting to start is hard. Once I made up my mind, I wanted to start right away! When do you start tx?
You will do fine on tx. It is doable, even with the sx. Hey, look at me/ I am the sx poster child, it feels like anyway. Many have none. I think waiting to start is hard. Once I made up my mind, I wanted to start right away! When do you start tx?
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