HEPATITIS C COMMUNITY
Prolonging Treatment and Physical Symptom Buildup

Prolonging Treatment and Physical Symptom Buildup

I remember when I was way back at about week 36 that tx seemed to be getting harder but didn't think too much of it.  I'd read people saying WOW these last few weeks of my tx seem so ROUGH it's probably because I'm almost done now.

Well...I have to say the last few weeks for me culminated on Friday night when I was HORRIBLE (week 50).

I am starting to wonder IF (because I am not nearly done so it's not a psychological thing...I am going to 72) somehow it's possible that what we've felt is a cummulative effect of the IFN building up in our systems - training our immune systems or whatever to FIGHT on their own (which is one reason I WANTED to continue after 48).

I was so weak on Friday i thought to myself thats it - I am not doing another six months of this I'll take my chances and stop aty 50.

Of course..........I wouldn't do it but......it's getting so much harder every week it seems and I just think there MUST be some logical explanation?

Anyone have any thoughts or anything?
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Deb, Smaller pieces. Just this day and this week. I know you'd never stop - just need to deal with the discouragment.  You're 70% done, and a lot closer than just a few weeks ago.
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I'm impressed. I dont think I could have come up with a correct percentage.
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Avatar_m_tn
You are NOT a big baby! This is a big bad treatment. I think the thing about it is it is SO unpredictable. One thing I have noticed on the long haul is I have to REMIND myelf to keep up the water more than before. I would start to slip down on my water cconsumption level and sides increase as does that totally tired feeling. I also added another protein drink a day those add SO MUCH to how I feel. Maybe it is psychological or maybe we start to need more protein as time goes on. Sorry yu are draggin', I have no idea how y manage a full time job in the first place! Plus your girl is off to college and that has to have a mental effect adjusting to the change of her not being around the house. You are right on abuot the "cumulative" effect just being on this for SO LONG wears on us. Hope you feel better as the day goes on.
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What makes you think it's correct?
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Avatar_n_tn
I'm on week 50 too, also been my worse week for a while. I've put it down to a bit of a low  after bursting through the 48 week barrier, like I should have won a prize but got nothing :)
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Yes from everyone I have talked to it is the buildup in your system which makes it more of a grind.

Sorry it is getting more difficult to handle.

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Your not a big baby and like the rest of us you have gone through h*ll. And doing 72 weeks is not a walk on the beach.  I hope your sxs let up a bit and they may, when you get past a few more weeks.  I know you'll never quit but I understand how you feel, hang in there my friend.


Bob :)
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Avatar_n_tn
sorry bout that,
when i got to around 40 i was ready to quit. it is a long time to be sick. 72 is a longer time.
just take a calender and mark it like you are on week 2 and tell all the same. i will try and be kinder in my remarks. hang in there.
awaiting results i remain,
bobby
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Avatar_m_tn
I didn't know you were a long hauler too. Are you going to 72? I have lost count but I am right around 50 weeks too.
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Like FL says, break it up into more digestible bites. Sometimes you have to take it one shot at a time. Sometimes one day at a time. And when it really gets bad, forget the time and just deal with the moment.

All the best.

-- Jim
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Yeah, 72 here. Didn't go undetectable till week 36 [well between 24 and 36].
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I totally understand I think it might be not only be physical but a mental thing. It is just the grind of day in and day out. I can't imagine how I will feel at that point. I only did 24 last time and this time I am going to do 54 weeks. I know that sounds like an odd # but I have 6 weeks of meds from a friend that had to stop TX. So she gave me hers. I am going to do 48 from the doc and 6 weeks of hers. I want all I can get. But who knows I might not can take it all. I guess all we can do is wait and see. Deb,I am so proud of you! You hang in there,Debi
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Hang in there.  Look how far you have come!  I think the sx continue to come and go and I hope that they will GO now for you.  I agree, I used to take it one box of meds at a time since they came in 4 week increments.  Then, when things got tough, I took it one shot at a time, and most of the time, just one day at a time.  You have done well, and you will succeed.  I also think it is important to listen to your body.  I mean obviously we are going to feel horrific on tx, but I think you will know (like strator) if you have hit the point where you have crossed the line into tx being dangerous.  Hang in there, and listen to your body!
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Avatar_f_tn
Well welcome to our little club...it's not great to have more members but - I sort of appreciate it if you know what I mean.  Once again, it's just nice not to be "alone" and to have people who really "understand".

I keep pumping myself up saying to myself how tough I am and strong I am and all this bs - my psychi is fine really it's just dang if those sx aren't much more rough lately.

I think maybe it is the body getting really TIRED of being sick, I don't know.

I'm just glad I can come in here, whine and have people go oh I KNOW it just SUCKS doesn't it.

I kept saying oh my God I have the FLUUU the other night and my mother kept saying "oh no you don't it's that medicine" and I just couldn't get her to "get" that that was what I was trying to say LOL (as she was washing the thermometer in alcohol to shove in my mouth - like I said I was like five years old LOL).

I swear I thought she was going to stir the bubbles out of my pepsi and get me a  straw.  ;)

I mean don't get me wrong I TOTALLY think every little bit of it is worth it and I am starting to wear my SX on my arm like a badge.....I wouldn't change something like Jim's post above for all the sx free days that God has to offer.

I want the brass ring too!  :)
Together, we will get there.
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Hi Everyone,

Sorry to break in on this thread, but there's something I'd like to bring to your attention.....
There's a person here that is making sort of threatning remarks about the USA...  His comments really concern me, and their not needed to be made on this forum..... As one member put it "they need to go away" !

The comment is about Iran and Russia being partners and would be able to damage (ruin) the US, within 24 hours....

I take this as sort of a "harassing situation"...

Go to thread 8/26   "Interferon ruined my youghood years 1yr post tx sexual dysfunction low sperm."  ABBAS 1

Go to the bottom of the thread and see his comment.....

Maggie




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There is some good news in all of this for you.  At least it was an oral thermometer.
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I really did not want to post this but.. I didn't read it as a threat, but a statement of fact.  Perhaps if we are able to deal with this on an individual basis...Abbas is a person who is inflicted with the same disease and related impact as the rest of us.
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I don't see it as a threat either, just harrasing and I (personally) wouldn't deal with him on an individual basis...
I prefer to just ignore bad behavior,any time I see it ( that's just me )...
This individual has been 1 year post tx and I don't see any excuse for the comment... no one was speaking to him about politcs or the power of anyones country, he chose to make a very inappropraite comment on a Hep C forum.  He obviously didn't like what others on the thread had to say to him.
BTW, I am on tx and I have plenty to complain about  (including sexual issues) with my medical resulting from the tx... I still don't see the excuse for someone making harrasing comments , when there was no need for it.....
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I'm very sorry to hear that you had a rough Friday.  I think it has gotten harder for me towards the end also and I can't even imagine going 72 weeks like you are.  You are so strong to be able to do that.  Remember, you may have a ways to go but you're over half way there!  You can do it!  I have faith in you.
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I hear ya girl , It wearin' on me too. I'm self employed , work at home , and still couldn't work Thursday and Friday. Its been a really bad two week run. I am feeling better today though. Did you get over it? What I hate is the second guessing I do when I'm trying to figure out why I'm feeling worse than usual. I find myself downing water like no tomorrow because thats all I can think of to do.

Hang. Your a tough one. 22 weeks to go? I just finished 23/52.

Mark
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I am the biggest baby in the WORLD and couldn't wait to come in here and whine it would seem LOL.

But...you can only whine to those who really GET IT you know?  My poor mother who's in her mid-60s (although man she doesn't look it) was caring for me the other night...and I have to say I felt like I was five years old again - it was sort of GREAT in a wierd way considering I"m supposed to be an adult LOL.

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I know I'm going to sound like a windup doll, pull the string and out comes the same old 'take your vitamins' message, but boy did the message about tx stripping the gears come home to me when at about 50 weeks it was discovered that I had gotten low on calcium and Vitamin D levels, in spite of supplementing; and six months after I stopped, it was discovered that I had completely depleted B12 stores, which are held in the liver.  These may just be numbers on the page, but the physical consequences were pretty intense.  Add to that low platelets, low thyroid levels, low Hbg, etc., and we feel exactly the way you are now.  I think Kalio's suggestion about daily protein drinks is a good one--try to sneak in as much pure protein as possible, and keep your mineral intake super high.  And, above all,  go see the new Will Farrell movie!   (Hang in there, kid.)
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Sorry to hear it's getting harder for you.

I too have been finding it getting harder, particularily the weekend following the IFN injection.  I've just been attributing it to running Neupogen tx and fighting the anemia waiting for Procrit increases to kick in.

I hope I'm right here as otherwise it will be hard to be optimistic that I can go the full 98, provided I get 2 log drop from 72 mil in 6 wks, since I'm only at wk 31 now.
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can you imagine Ina and lvdbygd?  those two imposed a long sentence on themselves even though they were geno two and three! They were supposed to be the short course and booked themselves for two yrs or more, because of a possible breakthrough.  In the end, you do what you must to get that SVR. Ina got it, Sandi is next. You do what you have to, and sometimes is more than what you thought you could do!

I hope the next generation of tx is a shorter sentence, I really do. but this is one clever virus...
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all i can say is hang in there, i saw the dr on friday and looking at possible 72 week also. on week 23/???..big blood test coming up 24 to see if cleared..if so going to do 72 also,as you know sides come and go,so take it one day at a time! hope you feel better:)shelly
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Also, youre not a baby at all...this is a fairly traumatic disease and treatment for most people, my opinion, but I think part of the function of these boards is to give one another encouragment as we take our respective journeys with this creepy disease...it's not like youre taking a two-week course of antibiotics for an infection....you've shown a lot of resolve and strength...

If you need some encouragment, by all means, let people know, there is a psychological component to healing as well, again, my opinion....
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I dont see it as a threat OR "harrassing" I think it was rude for people to question him as to him referring to himself as Persian and maybe that upset him, he is here about his ILLNESS not his country of origin plus he is using English as a second language. If you are a US citizen and someone refers to you as an American, is that offensive? To question him like that about referring to himself as Persian is very impolite. He is here about his Hep C and it is not our job to give him a lesson in world geograpy or map politics. I am sure he is aware that Persia is now referred to as Iran by some, but NOT by all Persians. Persian and Iranian are interchageable terms. It is rude to question him about how he refers to himsef. Just because many Americans are not aware that Iran is Persia there is nothing wrong with him referring to himself as Persian. Maybe his statment about Russia was unecessary but it was not a threat or harrassing, it was a statement of facts as he sees it. Probaby the only reason he said it is people are being rude to him and made him feel defensive. I m sure he and ALL his countrymen face a tremendous amount of prejudice everywhere every day. Here he should be safe to discuss his disease. He has been coming here quite awhile and it would be nice if people didn't let their prejudices into this forum.
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I hear you.  I only did 8 extra, not the 24 extra that you have signed up for, but all during those 8 there was something in the back of my head saying, "why are you doing this?  You don't have to."  I had to keep reminding myself of my own arguments - you too, I bet.  Your reasoning was well thought out and the doctor confirmed it.  We just don't want to do this again, do we , Deb.  Still, those last weeks were hard.  I kept wondering if my body was falling apart in overtime.  I can't tell you it gets any better, although some like Cuteus did not have a bad time.  

Hang in there Deb.  WHat are your neutophils doing?  What you are going thru reminds me of how sick I got around 36 weeks.  Perhaps your immune system needs a boost  - maybe Neupogen.  Maybe B12 shots?
kathy
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Hi there:
I guess abbas is kinda of angry because Iran was an imposed name by westerners (I think)
http://en.wikipedia.org/wiki/Iran_naming_dispute
I also think it was an ironic comment for all this talk being part of the axis of evil. I think we heppers should be friendly with each other (no matter what). Even Tailao deserves a break...
I would be angry if I were a non responder too
although he should treat people with respect
salu2

scuba
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Did you notice a difference when your ANC went down? I'm not sure what it does. All the sx seem to blend together.LOL.

NY; Sorry you had a bad weekend! Don't you wish we could schedule these bad days on the calendar so we knew when they hit? We could make plans?????
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friole; lol! I did not have it bad during tx, in the sense that I did not have general rash, nausea, vomiting, thyroid loss, headaches, and some other extreme goodies. But, oh boy, you feel every bit of the meds, nevertheless! you know that also.

you open your eyes each morning, after waking from hip pain once or twice, feel the familiar "bone pains" upon stretching and stepping off the bed, get the usual thought "I can't do this one more day", a little tummy woe makes its presence known.  If it is one of those days when UTIs are flaring, the burning urges you to the bathroom, and dragging plus shuffling you make it there. The other regular thought "maybe I should call in sick" creeps in, but after shuffling a few more steps, and taking the Vicoprofen, you dismiss the sick day thought, you are able to put the aches aside and the mental exhaustion, one more day.  You stop looking at the calendar after the 48 wks, and tell yourself that any extra wk is mopping up the hcv.  thinking of relapse and going through this again, motivates you on. Mental apathy is a biggy, and mental exhaustion precedes physical exhaustion.
Deb, one hr at a time, and after 12 wks over your 48, you tell yourself that you can quit anytime, that you did enough, that thought kept me going the rest of the 74 wks.
It will come to an end, it always does, and you can proudly tell yourself that you fought a tough battle, and sit back to wait for that first post tx PCR, which will be here soon enough!
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You made me REALLY smile for the first time today - when you said The other regular thought "maybe I should call in sick

I had to laugh.  If I don't think it every single day as a straggle onwards to the shower...I don't think I would know I am alive! LOL you see - that is why the friends on here like YOU have made treatment doable, without that UNDERSTANDING of what these extra weeks are like...I wouldn't even want to TRY to do them.

48 was bad enough and I thought oh another six months will be a BRREEEEEZE but zonk - it's just NOT cause there IS an easy cop out (hey I've ALREADY DONE MY 48...I CAN quit this bs!) nagging in the back of the mind I guess.

Thanks for reminding me.  My new motto has to be "if Cuteus did it...I can too" or I just might have to call in sick (and that is so NOT like me ;)

Thank you AGAIN. And yet AGAIN. And probably 1,000 more times before I'm done :)
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i've been a BAD girl.......haven't had a blood test since I went to Dr. Js and that was uh what six weeks ago or so?  I guess I should force myself to go get one tonight it's just like ugh...ugh...ugh...after a full year of being jabbed I dont wanna LOL.

But I did stop the procrit down to once a week and did drop down on the Riba to only 800 (only DOSE DECREASED AFTER A FULL 46 WEEKS OF OVER-DOSING on treatment, please not encouraging ANYONE to drop meds EVER if possible) so I should see what is going on.

There has to be something up to explain why I'm dragging and dying all of a sudden.

Still...I dont WANNA! LOL

PS I don't think the comment was offensive in any way really, just more a statement but that is why the internet is so scary we all read things differently and have to be so careful.
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Kaio,      I really can't blame you for assuming things about someone, especially when you don't know them (me)..  Lets be friendly about this, as you have been wth me in the past ( on this forum)... I don't know you either so please don't assume all these things your implying about me....  FYI, Houston is a large melting pot with people that have moved here from all over the world and I'm one of those who came here from another continent and later became a US citizen.  English is my fourth language and I'm fluent in all of them ( read and write )I lived in three different countries before moving and visit frequently mainly for the culture that I prefer over the American one ( we don't really have one ).  Don't take it as sounding prejudice, it's just mine and my families preference to vacation out of the US. We deal with foregn(sp?) peolpe here on a daily basis, and my brides maid at our wedding is from Iran ( not Persia )... She's the one who told us that they don't use the name Persia (in the meaning of land anymore) in Iran, they have persian food and speak in Persian...Sorry I have to go by what she tells me as far as what her country is now named.  I certainly wasn't being rude to him but just simply currious as to why he changed his wording in later posts and began using Persia..   It's just as simple as that because I wasn't meaning anything else by it and probably neither were the other members... I've even atempted to learn the Pesian language too, and got as far as Chyturi ( means hi ) and a few other phrases and since gave up, guess I'm geting too old to learn any new languages and too much brain fog over the past several years with the HCV and too many tries at beating it.  If I had known about this support forum in the past I may have succeded in prior tx's at which I failed....  My point is I like coming here to read, learn and hang in there like the rest of us are no matter how bad the sx's ( and medical issues )are.
I don't plan to quit now! WK 22/48  Whuuuhooo !  Although not easy, and I can certainly empathise with many here, that is why I'm here....
This is really all I have to say for the time being, I'm very
ill and just like to keep peace..  Hope your **** well, have a nice afternoon.

Maggie
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The last sentence **** ?     It says hope your doing well

Mag
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Amen to that.  The new, less toxic generation of drugs can't get here fast enough.
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Hey cutie, when you put it that way, I think I had it easier than you.LOL.  My thoughts near the end were more like....  why didn't I call in sick more when I really was??? Why did I force myself to work everyday?  Reason - because I felt less sorry for myself sitting at my desk than laying at home.  

ny -- soooo what did that thermometer read?  I am voting for you really being sick - not the meds.  Ya know, my daughter-in-law called me at noon and said she thought she was going thru withdrawal from quiting smoking.  She couldn't focus on anything and felt awful -- asked my to get some Nicorette for her -- called me later, they sent her home -- i think she really was sick. Sometimes we just assume our sickness is a sx.   I cannot believe you haven't had a CBC in 6 weeks.  My hemotologist would come out looking for me!!! I have had them almost every week for a year.

sfbay - no, I couldn't feel the neutrophil drop.  Did I really need Neupogen -- I had to rely on the doctors to tell me.  The only time I was really really sick, I was too sick to go get my Monday CBC so I will never know.  Still, I  have to assume that getting the neupogen helped my body to fight normal infections.
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Hope you start to feel better soon NYGirl, hang in there...you are a good example to many of us...
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I can only imagine. I take shot #5 in 2 days.

I'm already tired of how I feel - and I know that it isn't going to get much better.

I can't imagine what it must be like for you.

All I can say is: Hang in there. Remember this... If you don't stick it all the way out - and you relapse or do not become SVR, you will always wonder if it could have cleared with just "one" more week of treatment.

Yes. So far the treatment, even at this early stage has honestly been a bummer. It really wears down on you.

You can't relate to people HOW you actually feel, because they really don't want to know - nor do they understand, unless they have been through it. So you just learn to keep it all inside.

And part of you feels like you're "faking" it. Even though you're not. You yell at yourself for being lazy - you push yourself too hard. You keep going to work when you should be staying off your feet. You can't fall asleep and you tell yourself that you need to shut off your mind, it's all your fault for stressing yourself out. You blame yourself for everything - no matter how you got the disease... you think "what if..." You worry about dying, you realize people are afraid of you if they know... You know people out in the world have no concept of what is going on in your blood... You feel isolated in a crowd and your mind is spinning at a hundred miles an hour over absolutlely nothing useful. Everything in your body aches and you are shivering from being too cold, while your feet are burning up and you have to stick them out from under the covers. You feel like a scam artist because you have to tell everyone you are doing "ok". You look good because you've been applying your makeup and know how to style your hair. But inside, you feel like crystals are scraping together and you're having panic attacks that you can't even describe - even if you are on mood modification medications. So you just smile and grit your teeth when you want to scream at everyone else. The sound of beautiful music grates on your nerves and the world feels like it is crushing in on you. Your bones ache and you can't get comfortable. You feel like you have lice crawling all over your body, biting you in little tiny spots that you want to itch. Your injection sites are bruising and they're painful. You want to never put a needle next to your skin or see those bruises that never fade again. You are just tired of opening that pill bottle one more time and worrying if you forgot  a med one day. You think that this will get better and the next day you feel worse. You want to hug your kid, but they get close to you and all you want to do is be left alone to sit... To mold in one spot... because you don't have the damn energy to do anything more than just stare.

And that's how I feel sometimes after only 4 weeks - so I can't imagine how you feel right now at so many weeks. So close to kicking it.

But... There are those days when the world is bright and you can see through the haze and you know that you can make it.

So keep on keeping on. You don't want to look back to the could have would have might have IF stage.

All my blessings and good hopes.

Wagerwitch
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I really know how ny girl feels.  It passes love.  I don't know how but the time goes and if you've made it this far you'll finish.  I did 73 weeks of daily infergen and really thought I would lose it especially the last three months of treatment.  My last shot with procrit and of course the riba ended July 5th.  Now I wait.  It'll pass, I promise and then it will be over and you'll wait.  Much admiration for you ny girl.  I'd say you had a lot of grit.
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wow, I've been sitting here trying to watch tv cause I'm trying to get used to another anti-depressant, this time Prosac, so I can eventually take treatment...it reminds me of the old psyllisybn days (no idea how to spell that) and I'm sitting here wondering if I will ever be able to find one that I can take okay and it scares me that I won't...but what's the use of being pessimistic?...anyway, just tripping a little, watching the talking heads on the TV, and then this silly Target commercial comes on with everyone really red, and it freaks me out a bit, guess I'm anxious, ya think?...I think, maybe don't watch tv...so I came on here and I read your posts and it calmed me down a little, even though some things you describe are a bit harrowing...I guess they made me feel not quite so alone in all this...those thoughts you get, like I look at my dog and wonder, well, if I don't make it, who will take her? stuff like that...I keep feeling everyone else out there is normal and I'm the weirdo, with this disease, all of it...anyway, thanks so much for your posts, I better get off before I get weird on here as well, be well...
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For me the ADs just added problems instead of helping I know many say they help so much but every time you describe what is happening when you try a new one I relate they just dot work for everyone ad ca make things worse. I find it easier to just deal and not add a drug. I do have some just in case but havent needed them. You have been on Mr. Toads wild ride trying to find one that works! Maybe you just dont need them. (?)
I have a few friends on Celexa and they like it, have you tried that one? I tried prozac, what a NIGHTMARE. I would think all the waiting would drive me nuts, maybe just getting started will ease some depression issues caused by waiting. Not everyone becomes depressed on these drugs.
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Best of luck on that PCR. You sure did a long haul. Are you feeling pretty good now? Hope so, I know some have strugggles getting bak to "normal." Who wouldt after this long treatment, its grueling as you are well aware. I have 6 more months and I am already worrying about the post tx PCR! Such a hold it has over our lives. I'm trying to be grateful no matter what happens.
Welcome to the forum I am glad you decided to post. There are a few of us doing about as long as you did and a few that did a og ourse and are SVR, keep the faith. It is nice to hear from another survivor! Please keep us posted on your results if you get the chance. Glad to see you posting!
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73 wks of daily infergen!!! OMG! that is the "going further than you thought you could'!  a perfect example!
good luck on the PCR, when is it?
you can get one soon, the one month is almost as good as the three month one
http://hcvadvocate.org/news/reports/AASLD_2004/Posters_AASLD_2004.htm#A62
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Amazing isn't it what we can do when in battle mode?  73 weeks and six months prior, 24 weeks on Peg when my doctor took me off saying I was a slow responder.  Got down to a thousand though but he said it wasn't enough. I didn't complain too much about the daily infergen six months later.  It was a second chance.     I was told to have my labs done in six months.  Thank you Cuteus for the link.  I'm haunted no matter how busy I make myself, wondering and wondering and wanting to know.  I think I'm prepared either way.  I didn't ask for this virus but I'll play the hand I'm dealt.  No point wishing for another.
Lonestar
PS I've read this forum for two years.  Last night was the first time I've written.
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I can see your point and I might have to try to do what you say, but my psychiatrist and my doc said I should give some of these a try, as I do have depression...they say I should at least give them 10 days to work, actually Celexa is the next one I'll try if this one doesn't work....they say some people have to try 7 or 10 of them before they find something that works...thanks for the concern as always, youre a kind person who watches over people...hope youre doing well, you sound okay, but maybe youre just kinda stoic...I hope that youre actually feeling better...
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Thanks Kalio.  I couldn't fathom or realize how much better I'd feel so soon.  I guess it's been eight weeks now and it's amazing how quickly my body recovered.  Just a little pain in my hands and feet.  When I read Wagerwitch's post the other night I started shaking remembering and remembering other sides not mentioned.  I only hope we don't scare people off that are beginning treatment.  Was it you or Cuteus that made the suggestion about ADs?  I had Procrit forced down my throat  I imagined the worse when told I must go on it.  That lasted about three weeks and then I flushed them down the toilet.  Probably most people need them but I'm kinda cautious.  The chemo brain was the worst for me.  I love words and poetry, wit, humor and brain games.  I lost my ability to read, write or even make social conversation. I lost friends too.  I'm not all the way back but I couldn't have written these posts a month ago.  I'm not sure if I'll do the early pcr Cuteus posted the link for or not.  I'm alive again.  Crickets are chirping outside my window.  A little breeze rustles the leaves on my poplar trees and life is good.  My hopes and prayers go to all of you, the short haul ones and the long.  You can do it and I'd do it again if I had to.  All of you have helped me so much these past two years.  Thank you.
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