Hi, I'm going to be starting combo treatment in less than two weeks and have a question. I've been researching and communicating with people who are in treatment, or who have already been through it (sometimes multiple times). I've heard over and over again that you should drink a LOT of water every day. Most combo vest have told me to drink at least a gallon a day, as it will really do a lot to lessen your sides. They even seem to say it ike this: "Getting ready for treatment? Better learn how to drink a lot of water REAL soon." And say it in a way like "Ohhhh you'll be sorry if you don't...you'll learn alright!" I also asked my RN about this and she confirmed that you should drink a lot of water and that it does significantly lessen sides. But, of course I've never been through this, so what do I know? Not much, so I'm hoping those with actual, extensive experience can tell me once and for all if this is a wive's tale, or it really is a good idea. Thanks in advance for any and all responses.
Half your body weight in ounces is an often used formula. If you weigh 200 lbs, you drink 100 ounces of water. Some say drink a gallon but many find that hard to get down and in fact it may over -hydrate you which may not be good. I rarely got half my weight in ounces down the shoot due to gastro problems. Others have reported similar. Hopefully you will find the formula that works best for you.
Drink lots of water, that is what I have always heard. I started before tx to get used to it, as I wasn't used to drinking a lot of water. Now I drink it like crazy. I decided to drink ONLY water, so I wouldn't be tempted to drink Coke or something. I don't measure the amount, but I go through several cases of bottled water a week. I keep in a frig in my room and it goes fast!
We tend to be much drier in the mouth, at least I am, so it is very easy to drink lots of water I find.
I have heard there is an amt. you should drink, but as I said, I just drink it. I know some have said that you shouldn't drink too much, but I have only read that from a few people and haven't read much about it.
It must help with sx's, as it gets those toxins out of your body. When I am feeling bad from sx, water does seem to help me feel better at times.
I've only been on treatment for two weeks and have had no terrible side effects. I haven't succeeded in drinking the amount recommended (half your weight in ounces), but I drink much more than I did before treatment. I didn't start drinking extra water until treatment began.
I have to believe that the good fluids you drink, other than water, also count towards the water quota. For example, I had a large glass of milk with breakfast, a large glass of vegetable juice with lunch, and I'll have a large glass of weak iced tea with dinner (yeah-yeah....I know caffeine's not good for you, but I'm still drinking tea and coffee because I don't have SX's yet, and I'm stubbornly hanging on to my comfortable habits).
They say some coffee and tea are good for you as long as you don't drink too much. I too still drink my morning coffee and various teas. There is even a new study out saying coffee is beneficial to your liver. I agree with you, those other liquids do count towards your intake along with the water. I ow veggie juie is very good for you and your liver too.
Thanks! I looked on the site. It looks pretty good and isn't expensive either. I normally don't take supplements, but I will try anything to get off this Neulasta. At least I only take it every 2-3 weeks, but it's brutal when I do.
On vacation I took steriods from the cancer dr. They worked really well, but I can't stay on them, as they cut the interferon's effectiveness.
I will bend down and get my wallet to order some of this!
Thanks for your encouragement. You are so right, focusing on the positive is key. I like your idea of looking at it by "boxes" that will help the weeks go by faster. I try to look at how far I have come vs how far left to go but some days it is harder to do than others. Your husband is a lucky guy to have such a good supportive partner. My husband has been amazingly supportive, your husband and I are very lucky to have such supportive mates!
I have heard that too, that other liquids "don't count" so I the NP about it and she said other liquids should not be substituted for a good daily water intake but do count as liquid intake. So I guess lots of water AND other things too is fine. I agree with you, we can't give up everything! I love my morning coffee too much to part with it!
Sorry you are having all that bone pain, I hope you have some good pain meds and it eases up for you soon. Glad the heat has passed too. How are you doing with the fatigue/weakness? I really related to what you said about shopping in another post. That is exactly what happens to me and I just end up leaving so I can go lie down. Shopping used to be a popular activity around here! I guess I should be happy with the money I am saving by not shopping.
I will be up there the first of Sept. hope it is nice. My Hgb is down and I am sick of feeling so weak but just today my husband was cheering me on to go the whole 72 weeks so I am going to try to hang in there until March. Hope I can.
I am considering giving up these Neulasta shots unless I go down to 200-300. These shots are too much! The pain does go away after many days and so does the headache. Then I will be out there shopping again for sure! Actually my weakness/fatigue doesn't seem too bad. Of course I am laying down, so how would I know?
Before we left on vacation, I wanted to buy some summer clothes. I have one pair of shorts that are 10 years old. I just couldn't do it. I took the shorts I had. Luckily, it is clothing optional! Last night I did my grocery shopping online and had it delivered. What a great way to go! While in the stores, I usually have to find something to sit on and take a break every so often, or I send John. Yep, I'm gonna buy me a diamond ring with all the money I have saved over the year!
How long are you going to be up here? Are you going to Napa?
I just did my first shot on thursday night, and if it wasn't for all the water I began drinking the week before (thanks to all the advice on this forum) I don't know what would have happened.
I found that the week before tx I just almost coudn't bear all the water, I felt..ewe, yuck. Well, I have found out that if I don't drink all that water, I get soooo ill. I have been told by my doc, and my nurse to drink half my whieght in oz. (or close to it) everyday. At first it was hard, but now I can't get enough of it, (since starting tx). I know from experience already that if I forget to drink that water, I get sick. I now thank the water, and it goes down great. Just can't get enough.
I am feeling better today finally, a little foggy headed and tired, but better.
I drank a lot of water. I found when I didn't I got terrible headaches. I got to the point where if I felt a headache coming on I could sometimes cut it off at the pass by increasing my water intake. I drank it at room temperature and found that really helped with quantity. I think it also helped with the very dry skin and rash/bumps that can be a side effect of the treatment--moisturizing from the inside out! A side benefit for me, was that by drinking all that water I didn't have an appetite or room for soda/juice/chilled coffee drinks and all the other 'empty' calories I used to consume and I lost weight on treatment which I needed to do. Now that I'm post treatment I'm trying to keep it up. Good luck. There is light at the end of the tunnel!
Glad you are feeling better. Sometimes it takes me a day or so after the shot to feel semi-normal again. Once you get some under your belt you will have a better handle on when you will react. For the first 10 weeks, it seemed to change week to week, now it seems to have stablized. Hope yours do too. Make sure you check your labs in a couple of weeks for your blood counts. That is when some of us get hit with anemia.
I know what you mean about not getting enough water, I am the same way. I started out drinking lots of Kerns nectar, as well as water and LOTS of ice cream. I keep thinking I am gaining weight, but my weight dropped (suprisingly) 2 lbs when returned from vacation. I have stayed about the same so far.
My husband was on Neulasta during his first treatment, switching over to Neupogen. Though the Neupogen was slightly better, he still felt like a truck ran him over. When he relapsed and started treatment again, I was desperate to find some other way to keep his WBC's up and I found an article written by a DR who treated Cancer, and he had his patients take Shark Liver Oil. It didn't say how much or the brand, so I did some checking around and found <A HREF="http://www.iherb.com/store/ProductDetails.aspx?c=Herbs&pid=SCA-06022">Shark Liver Oil</A> at this store. During his second round of treatment, he never required any rescue drugs for WBC, though he still took Procrit. If the link doesn't work, go to Iherb.com and search for Scandanavian Shark Liver Oil.
Maybe this will help you too. I believe I had Greg take 4 capsules a day, but of the 500 MG.
When I went to the dr. to learn how to do the treatment/ I was told to drink lots of water also. In the info. they gave me, was a place I could call and register. It was with Shering, it's called the be in charge program. www.beincharge.com or you can call 1-888-437-2608. They have nurses on staff 24/7 and they call you to check on you, etc... Anyway they called me for the first time the other day and talked about fluid intake. I have a difficult time with water, but she said it did not have to be only water that counted for your daily amount. Caffeinated (sp?) could not be considered a part of that. She said clear fruit juices, gingerale, fruit smoothies, popsicles, powerade, etc.. all counted. She said that a lot of people have a hard time with just water, I am one of those. When I do drink water, I add fresh lemon and a tiny bit of sugar to make it easier.
I was also told to consume 1/2 of my body weight in protien also. That can be in the form of protein powder added to smoothies.
One thing she said to be careful of was citrus, bc it can make you nauseated.
Oh yeah, she just said it was important to eat something or drink ensure, carnation instant brkfast., every 3 hrs or so to keep from getting nauseated.
I hope this helps. Good luck with your tx.
You said that Steroids reduce the effectivness of the Interferon? (16 weeks combo) My Rhumatoid doc gives me a rather hefty dose of Cortizone in the arm every 6 weeks, and now she put me on Pregnizone and an additional Sulfa drug. Do these reduce the interferon's effectivness that you know of?
That is my understanding. Steriods reduce the interferon. My Hemo/oncologist said 1 for 4 days of Dexosome? wouldn't do that much and there is the QOL issue. He told me I can take it, but take as little as possible. He said don't take 4, take 1 and see if that works. I did take one yesterday when I couldn't stand it. Hope I don't need more.
I would check with your GI/Hep dr. to be sure that those drugs you are taking are okay on tx.
And sorry to hear of your husbands relapse and subsequent re-treatment. I completed 56 weeks of Pegasys/ riba and relapsed within 30 days, so he's got my sympathy. I was wondering if you could elaborate on your husband's stats, and the story behind his late (one year?) relapse. As you're painfully aware, this is quite unusual; other members here would be interested as well.
I saw your post when you relapsed and my heart sank. I feel sick everytime I see those words.
Greg is geno 1B. He had baseline VL of 9,230,000, stage 3. Greg initially treated with Pegasys/Rib for 48 weeks. EVR just 18 days into treatment, undectable throughout treatment and post treatment through his 6 months PCR. At his 1 year post PCR, he had a VL of just 3,000. Retested immediately and it went up to 108,000. They started Greg on Infergen, daily doses of 15 mcg's which he did for the first 6 months. Then went to every other day for the remainder of his 48 weeks. This treatment was so hard on him physcially and mentally that he couldn't conceive of doing 1 additional day.
He thought he relasped again, so at 7 weeks he took a PCR and was surprised that it came back negative. Under the circumstances though he wasn't overy excited or optimistic by this, which is why he has decided to wait until 6 months to take another PCR.
For such a simple recounting you would think there isn't much to this story, but it has certainly consumed our lives for 3 1/2 years.
Let me just amplify my sorrow over your relapse. Really sorry.
Yeah, I suppose they've got to ask regarding reinfection; I was going to ask as well, but didn't know how to delicately present the question. It's an ugly situation he's dealing with.
I would certainly think the test sensitivity was sufficient; although there are quantitative tests available to <5 IU, and I believe a qualtitative assay that reads to <2 IU, <50 IU is frequently used to establish research parameters, etc. At any rate, he somehow slipped through the cracks. As Jim mentioned above, some doctors believe that multiple Tx might "train" the immune response; my new doctor seems to subscribe to this theory himself. Hopefully Greg's T cells agree as well...
Yep, it's me. I haven't been around much these days since Greg relapsed. That was a pretty painful time for us and the new treatment he took was grueling. We're 12 weeks post tx now, hard to believe it's been over a year since he started tx again. Greg has decided not to take another PCR until 6 months post tx. I don't blame him since he relapsed at 1 yr post tx last time. We thought he was cured like everyone else, still shocking even now.
I don't know why but I felt I had to stay away for a while. But it's good to be back and seeing so many of the "oldies" are doing so well. Very happy when I read you SVR'd.
I would check it out with the pharmacist and the doctor I was told some types of steroids and all sulfa drugs were off limits on tx but I have't had to take them either so I did't look into it. It is hard to get a straight answer when you ask about drug combos you get different answers from differet docs it ca be frustrating. If you get a chance let us know what you find out. Hope things are good with you.
180 mg Pegasys is standard dose for all weights. Why the 135? I still think you should trot the WBC studies to your doctor. Just because extra drugs don't hurt SVR, doesn't mean you should take them unless necessary.
I don't know why 135mg was what the drug co said I should take. After coming here and asking why I had to squirt out 45mg, I called the dr. He said take 180 if you can handle it. So I have been since day 1. I agree with you about taking extra drugs, I don't want to take the neulasta and will check my labs, but want to wait until the numbers are 200-300, if this is okay.
My hgb went up and has stayed up, perhaps my WBC will too. I can only hope and try that shark oil.
Sorry about your husband's relapse. It seems to fly in the face of the statistics that say SVR is durable to around 98%-99. Someone recently asked a question over at "Janis and Friends" wondering if anyone relapsed after being non-detectible after six months. No one said they did. In your husband's case, a false negative at his six month post is always a possiblity, but then there's that 1-2%.
You mentioned that your husband had an EVR at day 18. Do you happen to know how sensitive the test was? Was he tested after that or did they wait until week 48? Do you happen to know the sensitivity of his six-month post treatment VL test?
Hopefully your husband will stay negative this time even though he cut treatment short. Some speculate that the "training" the immune system gets the first time carries over into subsequent treatments.
When I was wasting away on treatment my doctor suggest anabolic steroids if I continued to lose weight and muscle.
Here's what a well-repected researher/hepatologist has to say about Prednisone and Hep C treatment:
"...Oral Prednisone is the perfectly fine to use. I have treated people with it for most of their time on Peg and ribavirin and still gotten a cure!"
Complete Q&A here:
Like everything with the Hep C process, you have to weigh risks and rewards. If a steroid will help you stay on treatment, that's often preferable to not taking them and having either to cut down on treatment drugs, or worse, stop treating.
Wow, that makes me feel better! If I have to continue with Neulasta and bone pain, I am NOT going to suffer like I have in the past. I am feeling much better today after taking 2 pills over 2 days. I won't have to take it again for a at least 3 weeks now that the bone pain is gone. It makes such a difference in my QOL. My hemo says he will give me more, but that I should NOT take them much if possible. I didn't get more last time. I hate to think it could ruin my chances of SVR.
I figure since I am taking 180 instead of the 135 Interferon that was prescribed that should make up for what I lose....justify, justify. LOL I do feel quilty taking it, but the pain is too brutal.
At week 30 something of tx, I developed a serious rash and allergic reaction all around my chest, armpits, and abdomen.. Dr thought it was allergic reaction, and we narrowed it down to wife switching laundry detergents on me. The rash was severe, severe enough to be checked daily for a week, and ordered to take presidone as a LAST resort. I was told that it was not good to take, but if rash did not go away, to use it as last resort.
Presidone shocks the immune system, and halts the natural response. It actually sort of turns it off. Well, common sense during tx is that we are trying to accelerate the response, stimulate and strengthen it to kill the virus that it was unable to do on its own. One nurse went as far as stating that the short "free" period of presidone tx, it might give the virus an opportunity to replicate, or rebound.
I never took it, but I know others on here have.
Greg's PCRs were sensitive "less than 50". He was undetectable all through both treatments. As I mentioned in my last post he was EVR at 18 days his first round and EVR again at 10 days this time around.
There wasn't much conjecture about anything, there was just plain shock. Especially on my part. The first question put to Greg was "could you have reinfected yourself"? I think Greg almost fell over. How? Toothbrush? Shaving? Clippers? No, actually we were wondering if you were infected "again" not reinfected? Ah, you bet. Ran right out and put a needle in my arm because the hell I just lived through wasn't hell enough. Still, they tested his genotype to be sure, but he was the same as the first time, so "relapse" it is.
He did have histological liver improvement. both treatments have taken him from a 3/4 to a "mostly 2 with a little 3". So all was not lost.
We are going to ask for a super or hyper sensitive PCR at 6 months. Since his viral load was so low when he relapsed (3,000) there is some speculation on my part that he had just relapsed. Shortly before his 12 month PCR he complained that he felt like he was "sick again". I ignored that because obviously he was SVR. I just kind of blew it off. I feel bad about that now because he never complains about anything. While I know VL can fluctuate dramatically from day to day, it's the only thing that makes sense to me.
I tease Greg and tell him he's "special". He always did do things his own way, never fit into any mold.
Bill, I don't know why your doc isn't a fan of Infergen. We're not either, but we aren't fans of any of these treatments. Just felt like our options were limited. It's tough, the sides were over the top and he isn't even remotely the same man he was. If he doesn't clear it this time, he's going to do maintenance and wait for something better drugs to hit the market.
Thank you both for your kind hearted concern and empathy. I hope you and yours are as well as can be expected.
I have no idea what the protocol is to go off Neuesta. I just know my doc waits until ANC 200-300 to prescribe it. Hopefully your doctor will order frequent CBCs until things stabalize and both of you can come to a mutual understanding. Lots of different approaches regarding ANC in the Hep C medical community. As far as fooling around with the sharks, just don't bend over :)
There was a study suggesting certain per cent of EOT PCR positives were also TMA negative. 100% of his subgroup relapsed. Not sure how sensitive either of the tests used were.
I'm not saying that's the case with your husband, but it would definitely make sense to get a more sensitive test this time around -- something that goes down to 5 IU/ml. Quest labs has a couple of tests like that. One is "Heptimax" which is quantitative. The other is their HCV RNA Qualitative TMA, which is a qualitative. All the best with his new treatment.
In addition to considering allowing your anc's to dip a little lower before neulasta, maybe have a talk with the doc about using Neupogen. The sx's from neulasta, I think, are much worse than with neup. Plus, its 7 times more expensive (based on billing from my hemo). And although it seems to last longer than the nep I think the cost and sx's from the neulata do not make it a bargain, especially when you have all the other tx stuff going on. I found that I'd rather have more shots of neup than the sx's of neulasta. And, although both were covered 100% by insurance I didn't think I liked the financial aspects of the 'lasta either.
I'm not sure why the hemo won't let me give myself shots (maybe b/c I don't pull back :0) I don't want to go in every other day or so for neupogen. Plus he says I will get the bone pain anyway. I may try it as this 'lasta is the pits.
I ordered my shark oil. Not usually into this kind of stuff, but I will do anything at this point to raise those WBC's.
Even if I can't get the dr. to agree, I am the one that calls him to let him know my ANC is low. Last time though, he got a call from the WBC police (lab) at night! It's not always easy to get in so I can stall going in myself. I am going to next time. Maybe I won't get to 200-300. I wonder if the WBC police will pick me up.
I would still like to see more than one study regarding Infection and low WBC in Hep C patients. No, I haven't ordered that study yet. It seems that there should be more than ONE, if this were true.
My hemo administed Neup/Lasta on the spot, as a result of the in-office CBC. On a couple of occasions they gave me Neup on my CBC day (monday) and said to come back the next day for another. When I arrived at the ofc they'd get me into a treatment room - hit me with the neup and I was basically out of the ofc without having the time to sit down. For me, I'd rather have the inconvienience of going in two days in a row than having the 'lasta. We never discussed and rx for either Neup or 'lasta. It was shoot and go, they handled the insurance end.
But, hemo's ofc location was convienint to both home and work.
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