Aa
Getting started
I have all three meds. in house and ready to go. Trying to get as many things done before all hell breaks loose. Any suggestions before the ride to hell. I've read these posts OMG. I'm planing for the worst and hoping for the best. Anyone do heavy work while on these drugs ?
Welcome to the forum.
Follow the link it will help you out.
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64
Follow the link it will help you out.
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64
I know this seems stupid but what exactly does tx mean ? I believe it stands for the three drugs were taking.
Welcome! You know what your up for. I admire you for trying again. Please remember, I believe there are lots of folks out there who do not have many side effects, I know there is because I have met them in my community. Not all folks do bad or good. I came on here because I needed support with being Anemic. I am doing Vic (Bocep) so I do not have to do all the fat intake. I also think the time leading up to starting tx is the worse!! Your start day is almost here, I remember all the anxiety I had prior to that time. Now, I will be done with my last shot being this coming Thursday. Hang in there.............
Thank you all so much, it's a lot to take in all at once. I'll be doing a lot of reading here to get myself ready. April 7 TH is going to be my start day.
I am on Vic so I don't have the same experience as those on Incivik but some are common.
1. 48 - 72 hours after the shot you may have a fever and feel week. First shot my fever spiked to 102.5 but only low grade with the remaining shots.
2. I felt weak with some nausea from Friday shot thru Monday.
3. Anemia and resulting weakness, out of breadth just walking up and down stairs became significant after 4 weeks and the beginning of Vic. Ended up working from home for much of the last 2 months, and outsourced all of the yard work.
5. Lots of water. I developed a cough within a few days of starting treatment and it remains. Another side effect of the medicine and drinking is you have to pee a lot especially overnight. Very annoying.
6. Food tastes lousy, everything tastes metallic or like cardboard. Also can't tolerate spicy foods or regular portions. I have found a microwave potato or oat meal helps and several small portions thru the day helps.
Vic does not have the rash or anal pain as far as I am aware so others have posted good suggestions on how to address those issues.
Just remember, the side effects vary and do not impact everyone so take it a day at a time, eat healthy and reognize the cycle and magitude of side effects change during the treatment. Also, if you have not already done so you may want to talk with your manager and HR about the journey you are starting. If they are any good they will be prepared to help and certainly will need to understand what you are facing. The Family & Medical Leave Act requires that your employer not "punished" you if you miss days due to side effects so HR should be able to tell you what paper work needs to be filled out. Best of luck.
1. 48 - 72 hours after the shot you may have a fever and feel week. First shot my fever spiked to 102.5 but only low grade with the remaining shots.
2. I felt weak with some nausea from Friday shot thru Monday.
3. Anemia and resulting weakness, out of breadth just walking up and down stairs became significant after 4 weeks and the beginning of Vic. Ended up working from home for much of the last 2 months, and outsourced all of the yard work.
5. Lots of water. I developed a cough within a few days of starting treatment and it remains. Another side effect of the medicine and drinking is you have to pee a lot especially overnight. Very annoying.
6. Food tastes lousy, everything tastes metallic or like cardboard. Also can't tolerate spicy foods or regular portions. I have found a microwave potato or oat meal helps and several small portions thru the day helps.
Vic does not have the rash or anal pain as far as I am aware so others have posted good suggestions on how to address those issues.
Just remember, the side effects vary and do not impact everyone so take it a day at a time, eat healthy and reognize the cycle and magitude of side effects change during the treatment. Also, if you have not already done so you may want to talk with your manager and HR about the journey you are starting. If they are any good they will be prepared to help and certainly will need to understand what you are facing. The Family & Medical Leave Act requires that your employer not "punished" you if you miss days due to side effects so HR should be able to tell you what paper work needs to be filled out. Best of luck.
Somedays it will be hard to think positive because you can't think. Pooh just about covered everything. I would ask your DR if you can Email him with questions during treatment . Always get copys of labs. Find out when your Dr will treat low hbg and low wbc. Make sure you have plenty of batterys for the remote! Good luck too you and I hope you have few side effects.
i would make a plan to work and a plan not to work...you never know...i thought i could work building houses..i couldn't ...not even close...once during tx i felt good for a couple days and did some heavy stuff..i big mistake...my hgb tanked right after it..be careful...take it easy...billy
Hi Fish: You asked about "heavy work." Is that heavy physical work or heavy mental work? My job requires heavy mental work and I was not able to work while on treatment partly because of the anemia, the hypoxia, and the overall brain fog. Cheers, GB
Congrats Fish for having the guts to come back and go through treatment. You know, everybody is different handling the chemo and you know prior what it was like on SOC. If you are going on INC. as I did , and have the same SX like I did, just get ready. Not trying to scare you , but like you said, you know the hell, and I really dont want to be unfair and say that because there are some very lucky patients who do well , work and go through it fairly smooth. Just keep a positive outlook and slay that Flippin Beast. Welcome to the Funny farm :) Livinontheedge
Hmm, I am on Victrelis, but know a bit about sx with Teleprivir (Incivek). I would definitely avoid spicey food, and acidic food, like grape-fruits, even garlic irritated my butt, and Iusually love spicey food, but there was this horrible itch and burn. What cured that for me, was to immediately shower (Mr Shower), with Ivory soap. Also, avoid cosmetic products with perfumes.
You will need to vary yr diet, to intice yrself to get in that high fat, so, for instance, once I became tired of peanut-butter sandwhich, I tricked my brain, this morning, by putting the peanut-butter on a rly fresh,, warm flour tortilla. Then, I also use whole yogurt, but switch the brands, and even do the Keefer. I eat Brie cheese, with apple..anything that I find "a treat". Pamper yrself!
Oh, also....there are foods that have "purines" in them, which are supposed to block the channel, that the medicine uses, to get to yr liver, so you can google up that list, if you cant find it, let me know, I book-marked it, and can post for all of us. But I can remember, at the top of the list, for highest purine content, was sardines...so I would avoid that, and anchovies, You wont be craving salty food anyway. I have kind of been eating food that is easy to chew, as the Victrelis I'm on, seems to be eating away at my teeth quickly : (
You will need to vary yr diet, to intice yrself to get in that high fat, so, for instance, once I became tired of peanut-butter sandwhich, I tricked my brain, this morning, by putting the peanut-butter on a rly fresh,, warm flour tortilla. Then, I also use whole yogurt, but switch the brands, and even do the Keefer. I eat Brie cheese, with apple..anything that I find "a treat". Pamper yrself!
Oh, also....there are foods that have "purines" in them, which are supposed to block the channel, that the medicine uses, to get to yr liver, so you can google up that list, if you cant find it, let me know, I book-marked it, and can post for all of us. But I can remember, at the top of the list, for highest purine content, was sardines...so I would avoid that, and anchovies, You wont be craving salty food anyway. I have kind of been eating food that is easy to chew, as the Victrelis I'm on, seems to be eating away at my teeth quickly : (
Welcome! You'll get lots of encouragement here! It's ur turn for SVR! Karen :) ps great mind. A lot of this is sheer endurance.
Frijole keeps stats on us and they are all on spreadsheets in her photo section of her profile. They are the white sheets. Take a look at them if you want. She has start date, what dugs we are on, whether we treated before and what happened, biopsy results, starting VL, VL results at weeks, 4, 8, 12, etc. and any major side effects.
Here is a link to her profile:
http://www.medhelp.org/personal_pages/user/223152
It is rather interesting, I think, and encouraging.
She will add your stats if you post them or if you send her a message.
Here is a link to her profile:
http://www.medhelp.org/personal_pages/user/223152
It is rather interesting, I think, and encouraging.
She will add your stats if you post them or if you send her a message.
Hello and welcome to the forum.
I think you have the right attitude, positive and hoping for the best, but being prepared for the worst.
I was on Incivek from Sept. 26th to Dec. 18th. Here are a few of my thoughts"
*Drink a lot of water, 1 gallon a day
*Keep your stools firm. If they get soft or loose, the flaming butt appears.
*Take your meds exactly as prescibed (Incivek every 8 hours).
*Set alarms, get timers, because it is easy to lose track of time or just plain forget to take the pills.
*Try to eat regular food as much as possible. The oil is okay, but you need food with it, solid food.
Here are some suggestions for high fat foods (check the labels to determine how much is needed):
1 avocado
2 ounces cheddar or Havarti cheese
Bratwurst (check label, cannot remember if one or two)
Regular Greek yogurt (not nonfat) (I lived on it, lol)
Ice cream
Heavy whipping cream
butter
Mayo
Peanut butter
Cream cheese
Brie cheese
2 eggs, 3 slices bacon or sausage, and buttered toast (all of them together)
If I was in doubt that I had enough fat, I would eat a few tablespoons of heavy whipping cream with the other food.
A link to a site that tells you fat content of many, many foods:
http://holisticonline.com/Remedies/weight/weight_table-fat-content-of-foods2.htm
A link to posts about what foods contain 20 grams of fat (scroll towards the bottom to 80mecheng's post - lots of ideas):
http://www.medhelp.org/posts/Hepatitis-C/Are-these-fats-okay/show/1694773
I would have a few things handy in case you need them in the middle of the night:
Benadryl
Hydrocortisone cream
Loperimide
Maybe preparation H
Huggies baby wipes with aloe (you MUST keep the anal area spotless when you are on Incivek). Showers actually work better if you don't mind getting in the shower every time.
I don't know what type of work you do, but I would not want to be climbing ladders or roofs or hauling heavy loads around. I would not want to be working long hours. Many people work while on treatment but I don't know how many of them do heavy labor/work.
I agree with Gene that, while Plan A may be to continue working, it is a very good idea to have a Plan B and a Plan C. Ideas: desk job while on treatment; part time work; use of accumulated sick time, vacation time, comp. time, etc.; short term disability if you have it; long term disability if you need it; family medical leave.
Everyone's side effects are different. You already treated with Inf. and Riba so you know those sides, but the Incivek (or Victrelli) add another layer of side effects. You may whiz through treatment with few side effects or maybe even none. But you could get the severe fatigue, blood count problems, severe nausea, or severe rash, etc. Hopefully you won't have many.
One thing I would recommend is to get on top of the side effects immediately, especially the nausea and rash. They will snowball if not addressed immediately. Keep a close eye on your blood counts, which should be done at least every 2 weeks if not more often. The hemoglobin can drop fast.
I hope that info helps. I also hope you sail through treatment easily.
Best of luck.
I think you have the right attitude, positive and hoping for the best, but being prepared for the worst.
I was on Incivek from Sept. 26th to Dec. 18th. Here are a few of my thoughts"
*Drink a lot of water, 1 gallon a day
*Keep your stools firm. If they get soft or loose, the flaming butt appears.
*Take your meds exactly as prescibed (Incivek every 8 hours).
*Set alarms, get timers, because it is easy to lose track of time or just plain forget to take the pills.
*Try to eat regular food as much as possible. The oil is okay, but you need food with it, solid food.
Here are some suggestions for high fat foods (check the labels to determine how much is needed):
1 avocado
2 ounces cheddar or Havarti cheese
Bratwurst (check label, cannot remember if one or two)
Regular Greek yogurt (not nonfat) (I lived on it, lol)
Ice cream
Heavy whipping cream
butter
Mayo
Peanut butter
Cream cheese
Brie cheese
2 eggs, 3 slices bacon or sausage, and buttered toast (all of them together)
If I was in doubt that I had enough fat, I would eat a few tablespoons of heavy whipping cream with the other food.
A link to a site that tells you fat content of many, many foods:
http://holisticonline.com/Remedies/weight/weight_table-fat-content-of-foods2.htm
A link to posts about what foods contain 20 grams of fat (scroll towards the bottom to 80mecheng's post - lots of ideas):
http://www.medhelp.org/posts/Hepatitis-C/Are-these-fats-okay/show/1694773
I would have a few things handy in case you need them in the middle of the night:
Benadryl
Hydrocortisone cream
Loperimide
Maybe preparation H
Huggies baby wipes with aloe (you MUST keep the anal area spotless when you are on Incivek). Showers actually work better if you don't mind getting in the shower every time.
I don't know what type of work you do, but I would not want to be climbing ladders or roofs or hauling heavy loads around. I would not want to be working long hours. Many people work while on treatment but I don't know how many of them do heavy labor/work.
I agree with Gene that, while Plan A may be to continue working, it is a very good idea to have a Plan B and a Plan C. Ideas: desk job while on treatment; part time work; use of accumulated sick time, vacation time, comp. time, etc.; short term disability if you have it; long term disability if you need it; family medical leave.
Everyone's side effects are different. You already treated with Inf. and Riba so you know those sides, but the Incivek (or Victrelli) add another layer of side effects. You may whiz through treatment with few side effects or maybe even none. But you could get the severe fatigue, blood count problems, severe nausea, or severe rash, etc. Hopefully you won't have many.
One thing I would recommend is to get on top of the side effects immediately, especially the nausea and rash. They will snowball if not addressed immediately. Keep a close eye on your blood counts, which should be done at least every 2 weeks if not more often. The hemoglobin can drop fast.
I hope that info helps. I also hope you sail through treatment easily.
Best of luck.
I was a parcel responder. I'm ready for this, I'm determined not to let it kick my azz. I have to be I've got to support my family. I will get the vitamin D. I was told by my Dr that sunflower oil was a good source of getting the fat that is needed.
First, I like the name 1fish2fish,
We all react differently and as far as doing heavy work, I just want to tell you Good Luck with that. It is possible but I would recommend you think about the what if's scenario in case your not able to continue heavy work. I am just about done with my 12wks of incivek and the fatigue has been the worst side effect so far. There has been plenty of other sides but the fatigue really hit me hard.
I would also highly recommend being ready for the usual side effects and you can use the search box for remedies for whatever meds you will be using.
So Good Luck and like maybe says try and keep a positive attitude ( but be prepared.)
Gene
We all react differently and as far as doing heavy work, I just want to tell you Good Luck with that. It is possible but I would recommend you think about the what if's scenario in case your not able to continue heavy work. I am just about done with my 12wks of incivek and the fatigue has been the worst side effect so far. There has been plenty of other sides but the fatigue really hit me hard.
I would also highly recommend being ready for the usual side effects and you can use the search box for remedies for whatever meds you will be using.
So Good Luck and like maybe says try and keep a positive attitude ( but be prepared.)
Gene
Do you have vitamin D ? Be sure to take it while doing tx.
How about dry mouth products like biotene mouthwash and gel?
I try to encourage everyone to get some exercise, even short walks on every day you can. Do some stretching, yoga, whatever you can to make a habit of moving your body.
Wishing you the best of luck for a successful tx.
How about dry mouth products like biotene mouthwash and gel?
I try to encourage everyone to get some exercise, even short walks on every day you can. Do some stretching, yoga, whatever you can to make a habit of moving your body.
Wishing you the best of luck for a successful tx.
Good luck with your treatment and there are many good people here that can help with ideas for sides if they arise
Were you a prev. non-responder?
Welcome to the farm...
Will
Were you a prev. non-responder?
Welcome to the farm...
Will
Still no reason to expect the worst, I did 3 years on interferon and reba, relapsed twice and still went in thinking that I would do it standing on my head. Prepare for the worst, hope for the best. There is no excuse for a negative attitude, ever, IMHO. There are always people worse off than me...Mark
I've been down this road 5 yrs ago. I was told to stop after 6 months. So I do know the side affects can get ugly. Now with the Incevek I'm not sure what to expect.
The only comment that I have is that if you are expecting all hell that is what you will get. I went in thinking that I was going to do it standing on my head and so far so good after 51/2 weeks. A positive attitude is 99% of a positive result. Worry about it when it happens. That said, also listen to the experts around here, good luck...Mark
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