I suffer chronic pain and have an indwelling pain pump that administers morphine. The dosage is small since the drug is delivered directly into my spinal canal but when I get breakthrough pain I take oxycodone (percodan-percocet with out the filler drug aspirin/tylenol) Point is, I have constipation problems too. My doc has me take fiber and use a stool softener. The fiber makes sure there's something to pass and the stool softener makes sure it passes easily. She has me on this regimen as long as I use pain meds which is always. I lost my insurance but have full access to VA as a totally disabled veteran. I still see my "outside" Internist because I feel she's so competent and really cares for my well being. Ask your doc about the fiber regimen, perhaps he/she will agree.
First tell hubby congrats on the great log drop. I cannot address his SVR rate, because there are so many other factors involved and I am no expert (quite so). To be sure, stage 4 makes it tough but in any event, he is doing his liver good.
Quinine has long been used to treat leg cramps and muscle spasms and it works great. There used to be an OTC product called Qvil (I think) with quinine that worked great but it was taken off the market because of the quinine. I get them too -- usually just walk them out, so they probably aren't as severe as your hubby's.
For constipation I find regular All Bran cereal to be about the most effective cure - eaten at least 3 times a week and every day if necessary. Not the tastiest of cereals, but mixed with high fat yogurt (for the riba absorption) and craisons or raisons, it is quite good. The interferon seems to have solved my lifetime constipation problem, but when I have problems, All Bran is there!
Have you tried Total One with Honey Clusters? It is so tasty, I can't NOT eat it in the morning. My GI recommended it. It has 14 grams of fiber, compared to regular ceral that has 2 grams. It has become so popular in my house that I have to buy several boxes. Always a bummer when I go to get a bowl and the box is empty. The kids even love it. I eat it with a banana and I am a happy camper.
Good morning, SF. For some reason the old tried and true original All Bran works the best for me. I think it has 9 or 11 grams of fiber. The have an Extra somethin All Bran that has 14gm fiber, but it doesn't work as well for me. I will try the Total One, but I think that I have tried before. Whatever does the job is great to me.
Hey - been meaning to tell you that it is so cool that you were a poster painter in SF. I lived there 1969 - 1972 and still have a few of the old handbills from concertts framed - get LOTS of comments on them. Love that art.
I have a lot of cramping since beginning the treatment. Usually at night when I go to bed and it does wake me. My wife at times will help me hold my toes back or hands open until the cramping stops. Never had it prior to treatment. I hope you find a solution for him. Dale
The dr want's me to have my PCR test after my shot 22, so he can see that I'm still clear and if i'm not I'll be able to stay on meds without a break in treatment. The dr will give me procrit to take with me to Fl for a few weeks post tx to get my #'s up.
Sorry for the absence. I've had a fever for about 3-4 weeks now. The increased Nupogen for some reason makes me feel even worse but my ANC are gradually coming back up. I skipped labs this week because my platelets were back down to 55 and I just couldn't handle doc telling me we would have to stop treatment. I will probably be in a better frame of mind for that conversation next week and to beg for continuation. I seem to be springing a lot of leaks (bleeding) lately and bleeds quite a bit before stopping. I've basically gone into a counting the days that pass mode I suppose. I have 22 shots left and if the platelets can hang on I will complete. These past 26 weeks have been filled with ups and downs. I've reduced my medicines down now to where I am taking the Pegasys (150), Riba (1200) and Nupogen (300) and half of a Ambien (12.5). The fever seemed to have stopped yesterday its down to 98.2 and bone aches aren't nearly as bad. I hate to talk to my doctor about it because it just means more meds or more poking. I'm tired of feeling like a hog at slaughter. I know you understand that. Has everyone on the forum been doing okay? Dale PS Thanks for asking too!
It's a tough road. Being this far in I hope your plates have stabilized to within a few points from cbc to cbc. I plateaued around 60-65 and others (I think maybe goof) was in your range without med reduction. At least it looks like you are on full dose peg/riba right now. Strange about the neup reaction. The only time it had that effect on me is when the doc substituted neulasta (pegylated neup) for the regular neup. Neulasta is longer lasting - mabe ask the doc about it. Hang in there DR. The weeks are battles, the war lasts another 22 battles. Sounds like a lot but today is only 24 hours and your halfway through today.
Cool! I had a studio on the Embarcadero. It was very fun back then. Meeting all the rock stars...boy I bet more than a few of them have this dreadful virus. They were way more into their stuff than I was. I painted buildings, walls, murals, trucks for the Starship etc. and album covers. We used oil paint or airbrush. I have a few of the old covers hanging in my house, but they are on wood or canvas, not posters. Those posters are great, I wish I had a few more of them. After hanging on walls in the 70's they didn't last long.
I am so sorry to hear you are doing so poorly. Do you have cirrhosis? Those platelets sure are low. Don't like that fever. I too am surprised that that is a Neupogen reaction. Perhaps you picked up some infection, and the Neupogen could not boost up the white blood count even for that.
Got that right -- must be hoards of old rockers with hep C. WIsh they would all come out of the closet. WHat a force that would be. I will be your work is awesome. Lived down the block from the Airplane for a couple of years. Loved it when they were practicing at the house.
Welcome back Dale! Lots of folks been worried about you. That bleeding is something to be concerned about, I hate to say. I think it has more to do with the platelets too. Any chance you can get that Neumega? I'm afraid I am right behind you on this issue too. There just has to be a way to get the numbers up enough the keep the doc off your back. I'm sure your diet is good? I wish you the best here and please keep the forum informed as to how things are going.
FLGuy-I always was told the Neulasta was a quick pump that wouldn't last more than a day or maybe two. When the doc rushed me to ER for one of those, it pumped my numbers way, way high. Then the Neupogen took over. They said it would only last a few days too so by the time the next Peg shot arrives it is gone so another Neup shot the next day.
Doc also said the bone pain is probly from the Neup but lately I think I feel more from the Procrit. Been really whopping my legs til I asked for Handicap Parking, doing the Old Lady Shuffle. At least I hope the leg thing is from either Neup or Proc and will go away.
Hope your days all have many good moments in them.
hi there girl. hope you're doing well. i posted some questions for beagle, i'm sure you could help me. any input i'd appreciate. i know it's all been said before but i didn't have an issue w/ hmg then so i kinda spaced on some of the basics. i guess i'm still ok @ 10.8 but want to be ready just in case. a crash course on procrit is what i need. i don't want to reduce my dosage. thanks for any input and be well. tracy
The reason for the PCR at week 22 is in case (and God forbid) I'm not clear, there won't be a break in the treatments. Even though I have been clear since week 12 he doesn't want to take a chance with any thing. This way if the virus is back there is no break in treatment, I will just continue as I have been. The doc with the procrit will give me about 4 extra shots to take home with me post tx so I can get my #s up and I'll get my HGB tested in FL and faxed to the dr.
In the first 6mos of treatment I would also wake yelling from sleep with leg cramps and charley horses. A lot of things were recommended, both here and from family.
2. I had thought of quinine because my Dad had been a medics aid in WW2 and he suggested it. I do believe someone did podt here that there are possible dangers with quinine when are blood counts are down. Maybe someone remembers. Also on the hep c net site it does list quinine with drugs that MAY cause liver damage in acute dose. Acetimopre is also there but my doc has me take that.
2. I kicked up my potassium which was suggested by eating bananas. Still the cramps. Stopped the bananas for a while. Last 2 times I had bad cramps were days I ate banans. We're all different so maybe it 'll take a little to find the right solution for him.
#3. 2 of my aunts swear by calcium and magnesium for bad leg cramps. Might want to look into that or ask the doc.
wish the best to you and your husband. When you're overwhelmed stop in here. Better yet stop here a lot, less chance o getting overwhelmed.
The last time they increased my Nupogen I had the same reaction. The stuff is obviously poison to my system but it does bring my levels back up to safe zone. The platelets and no rescue drugs I guess I am just at its mercy. By skipping a week of labs it kept information from the doctor which let me get another week in. I think one of you asked if I had cirrosis. I have mild fibrosis. Liver is really in pretty good shape and enzymes have tracked low normal for 10 years now. VL has remained consistent always. I have been UD since week 12. If I can stay out of harms way and not get cut I should be okay. Not sure what is causing me to just have openings in my skin, no sign of a cut and blood will just come through and I don't know it unless I feel it running on my skin or someone else notices it coming through my clothing. I don't let it freak me out I just figure it is another part of treatment. I hope both of you have been doing well. Dale
hi mr. bailey, first off glad you're doing ok and holding steady on your hmg. i don't know how you do it. i'm down to 10.8 and feeling lousy. my PA wants me to get another cbc in 2 weeks to check it. my question is, do you inject the procrit yourself or do you have to go the dr's office? is it a weekly thing? curious because of my no insurance situation. i'm trying to get my ducks in a row just in case. is the choice procrit or riba dose-reduction? i'm nervous and making it worse for myself i'm afraid. sorry to bother you. glad you're doing ok and thanks in advance. tracy
The first time they have you come in and show you how to do the shot and then you have to do it at home yourself (Beagle is the only one who does not...he has Thalessemia (can't spell it) which means he has VERY low HGB to start with so I guess the doc makes him come in so he can monitor him).
This will work out well for you as it will save on doc visits...but you need to get working on a way to have someone provide the Procrit for sure! It's too expensive! I am sure somehow it can be covered but don't know about those things as I only stay at my job so I HAVE insurance right now LOL.
10.8 is low but not tooooo bad - they won't prescribe until you hit under 10. Right now mine is around the same as yours and I am already taking it - it keeps dropping a little at a time which is a good thing ... as long as it goes down very SLOWLY you have a chance at not being devastated. It's when it bottoms out all at once that it really hurts BAD.
Make sure you are keeping on top of getting your blood checked - it can easily drop down to 9...then you will need it fast because it takes WEEKS (at least 2 - 4) for it to begin to work. You won't feel better right away.
I hope that you don't ever need it and that your hgb starts to go up! It can happen!
Thank you for such a quick response! i've called procritline.com just now and she said she thought i'd qualify for free meds since i qualify for schering-ploughs program. that it takes 2 days for approval and they ship the meds to my dr. after that i can get a pharmacy card. Whew! what a relief! i've been freakin' just a little but i'm day-after shot day also and can't tell what ache or pain is from what. :) One question if you can...it's once a week right? and do you have to stay on it thruout tx once you start? thanks again debby and take care of yourself. tracy
In your post you said you'd do the blood in Florida. Most of my blood was done at a hemotologist's and that was fine. A few weeks ago I was at a Quest location, with a prescription, and asked them if I could just walk in to get a blood test some day(I didn't specify what test). They said that for all blood work, they need a Dr. order or a perscription for it. Guessing it's at least a state-wide requirement (don't really know). The point is that if your NY doc needs some of your FL blood you may need soemthing in writing from the NY doc unles you have a FL doc that's playing along.
Thanks linda. hope you're feeling better soon. i'm still above 10 so my dr. won't prescribe until i fall below that but i wanted to be prepared just in case. let me know how soon you get to feeling "normal" again. like there is such a thing anymore ;)
No kidding! One hour to the next is sometimes a new experience! I had my #4 shot last night and not to many sx today, except the low hgb.
My Dr. told me the same thing about procrit and insurance co. He freaked at my big drop from 16 to 11, but told me I had to wait. I called my hemotologist and he gave me the shot in his office. Can you get a referral to a hemo doc? What shot are you on now?
yes, I know it must be difficult w/o insurance. Just getting the energy to get on the phone to deal with this stuff is a struggle for me sometimes. Did you read the above post about the different care programs? I am sure you did, but they sound good. I think since my Dr. gave me the shot in the office, I didn't have to pay. That may not apply to you though.
Please take care of yourself and rest. It's draining to have the sx we do.
i could probably get a referral but since i'm uninsured it's just one more doctor to pay, ya know? i've depleted my savings just paying for tx so far. pre-dx tests, the biopsy, labs, etc. has cost about $15,000 so far so i'm kinda tapped out....anyhoo..:) i just did shot 13 last night and sx's have settled in. things change everyday. what bothered me yesterday has gone and something new has taken its place today. but hey. what can we do? sorry to complain- sometimes i feel like i'm so pre-occupied w/ myself it just has to be wrong on some level, but i'm a guilt-tripper anyway. you take care of yourself and keep in touch. it sure helps to have you guys. tracy
That's great you got a responce from Procritline. I am also having a tough time with hgb. Got my first shot today, so I am hoping it works soon! That dizzy, light headed breath taking feeling has got to GO!
Are you getting the drugs in a few days? Probably not until next week. Hope you are feeling okay.
Tracy--My dr give 's me my procrit shot every week , but when I'm done we treatment will give me 4 procrit shots to take back with me to Fl so my #'s come up. You are no bother, glad to help. Here is the # for free procrit for those who have no ins--1-800-553-3851. Give them a call, they will help you. Also here is the web-site www. procritline.com. Get this approved now as the procrit takes weeks to work. In my case it took 6 weeks to kick in.
My HGB is holding at 7.3 and instead of reducing the riba I upped the procrit. Hope this helps.
FLguy-- My dr will give me enough procrit to take back to FL after I'm done with the meds to get my #'s up. The drs will give me all the scripts for blood tests to take back to FL and the results will be faxed to the drs in NY.
Sounds like you have a plan. Sounds like another trip to NY before you are done. Are you feeling well enough for the rigors of house-hunting or does that happen when tx is over? Familiar with realtor.com?
I'll fly back to NY on the 23th and then home for good on 6/12. Was down south on Wed. lookingand picked up a lot of real estate books. The prices are starting to drop and by the time I'm ready to buy it should be lower. I now live in the Villages, you probably heard of it, but it's not for me. The prices here are still holding so that's good.
Have been on realtor.com and other sites. A lot of good buys out there.
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