Hey Grey I was reading thru some old posts here in the group - always
searching to see what others had to say about whatever I am feeling at
the current moment.
Presently I am three months past EOT and still going thru the "oh-god-
I-still-hurt-everywhere"s and "why does my liver feel so
uncomfortable?" worries. I DO have severe degenerative osteoarthristis
in left hip, so I have no clue whether it is arthristis related, or if
it is still tx related. Not telling anyone that I am just SURE I am
relapsing, just like you did.
I keep telling myself that these Drugs From Hell don't fully clear for
six months (3 to go) and, ever the optimist, that maybe the liver
discomfort is just my liver growing new cells and getting bigger,
therefore, more prominent in my forty-pounds lighter encasement! haha!
ROFL when I read a post from you suggesting you thought the exact same
thing...
Sounds like our tx went about the same - immediate drop in blood
counts by week two. Lots of liver discomfort in tx. Doctor said "of
course there is, there is a Major War Raging in there right now. The
first 3 or 4 months will be the roughest, and then it will be all
downhill from there"... - everyone kept asking are you sure he said
"all DOWNHILL??" (That was correct as it turned out, too, as the
anemia got worse, while he spent months just watching it, till I
finally was started on Epogen at month 7 when my white count hit 1.9
and he said "I don't know how you are even on your feet, never mind
working every day" - he also said that anything I asked him about,
including the hack-up-a-lung cough, was not a side - NOTHING was a
side according to him, Strangely enough the cough which started two
weeks in to tx, faded 2 weeks after EOT. What a coincidence! ;)
At any rate, I was wondering how long since EOT for you now, and how
you are feeling, did the aches and pains, and the liver "discomfort"
ever get better or is this all there is to look forward to now? I've
been telling myself that after a year of sitting on my butt and laying
on my back, muscle atrophy needs to be turned back into muscle tone
etc, but the aching at night especially, is still tough to take, a
good night's sleep is hard to come by. Since your posts during post tx
and psot tx sounded exactly like what I am going thru and I know you
are still here and posting, thought I would ask. Maybe when our cold
NE Winter ends and warmer Spring rolls around, things will improve. I
figure just noticing it actually is Spring should be an improvement
over last year - I think I slept thru all of Spring and most of
summer, except for when I was at work. Get up, go to work, come home,
collapse on the bed for a few hours until it is time to go to bed
syndrome, ya know? :)
Happy "SUN-day" :)
Randy T. - 04 Mar 2007 15:25 GMT
check your iron/ferritin levels....... complete iron profile.
dBo - 06 Mar 2007 01:24 GMT
> check your iron/ferritin levels....... complete iron profile.
Yeah had that done prior to tx - a bit high on iron levels, and gastro
ran testing for hemochromatosis as well - negative
greyhackles - 04 Mar 2007 21:00 GMT
>Hey Grey I was reading thru some old posts here in the group - always
>searching to see what others had to say about whatever I am feeling at
[quoted text clipped - 45 lines]
>
>Happy "SUN-day" :)
Hi dBo! Are you the long-lost sibling I never knew I had? ;-)
I finished therapy in September of 2005, so it's been 18 months since the last
shot of Peg and mouthful of Riba. As you've read, I had a really good scare
(or is that a really bad scare?) but it wasn't the hep making a come-back. To
this day I don't know what the hell it was - so I've relegated *most* of it to
the "must have been the fricken flu" bin.
It's amazing what the body will sacrifice to keep the core running when faced
with severe anemia. Along with the 40+ pounds I lost, my muscle condition
really went in the toidy. Although I only missed one day of work while on
therapy, it was a desk job that I toddled to and from each day, and for sure I
had zero energy beyond just making it through the day.
To this point the muscle tone is hugely improved but still not all the way
back (and perhaps it will never be - I'm getting old ;-) The good news is,
after going from 235 to just a scoche over 190, I've been holding steady at
210 with a BMI under 25. Makes my PCP happy, makes my insurance rep happy,
even makes the spousal unit happy. It's all good :-)
I think I'm pretty much over the aches and pains of treatment, with two
exceptions:
One, I am almost certain treatment aggravated the diverticulosis that my
&#%@*! gastro doc forgot to tell me about when he did my colonoscopy a couple
of years before therapy. I'm pretty sure my ascending colon popped a whole
bunch of new and/or bigger pockets, and I attribute that change to the overall
physical degradation caused by therapy (and coupled with all the other
symptoms I was having post-tx, it sure seemed like a relapse was the only
explanation). I won't know for sure until the next 'scoping, which ought to
happen in 2008 (ugh).
Two, the skin on my hands was totally trashed during the winter of '05. At the
worst point they were a mass of bleeding cracks, which transitioned to a mass
of scar tissue. No amount of lotion, including prescription stuff, sleeping
with cotton gloves covering handfuls of ointments, did anything to help. Now,
it doesn't take much to for the skin at the sides of my finger joints to crack
wide open again, especially if I'm doing work in my shop.
Minor stuff, to be sure, compared to what many others are dealing with. All in
all, I'm doing great, and happy to be living without the dragon...
Spring WILL make a HUGE improvement in your daily outlook. Even before I got
the 6 month post-tx SVR test results in late March, the lovely weather we had
last Spring embraced me with its warmth and made the outdoors something I
didn't need to recoil from as I had the previous two Winters (which is really
something for someone who has been a die-hard skier since he was five years
old).
Cheers - and hope you draw the lucky SVR card when your test comes up!
/greyhackles