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| 25 new of 257 responses total. |
tod
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response 200 of 257:
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Sep 17 23:04 UTC 2003 |
This response has been erased.
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dah
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response 201 of 257:
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Sep 17 23:07 UTC 2003 |
k.
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klg
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response 202 of 257:
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Sep 18 01:29 UTC 2003 |
#173 of 201 by klg (klg) on Fri Sep 12 12:55:15 2003:
CHOP is four chemicals, although the Pred is taken as pills:
CHOP chemotherapy agents
C Cyclophosphamide (Cytoxan ) DNA-Altering
H Doxorubicin (Adriamycin ) or Rubex or Hydroxydaunomycin Antitumor
Antibiotic
O Vincristine (Oncovin ) Blocks Cell Duplication
P Prednisone (Deltasone ) steroidal: anti-inflammatory,
Immunosuppressant
RITUXAN - a monoclonal antibody (Mab)
Can't remember being told to stay out of the sun by anybody except the
radiation oncologist. who said to keep the skin of the target area
covered by at least a tee shirt for about a year. Never had any
problems.
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keesan
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response 203 of 257:
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Sep 18 19:15 UTC 2003 |
I was just informed that I have intermediate grade lymphoma and it is stage
IV because of abnormal lymphocytes in the fluid around the lungs. (I vaguely
remember someone coming into the room where they had left a couple of bottles
of it and asking my permission to take one for analysis). So Stage IV does
not depend upon liver enlargement.
Also that any symptoms that I have now are due not to lymphoma but to the
chemotherapy. The fatigue has hit as expected. Morning nap again. I should
phone if I run a fever. My temp this morning was 97.2. Jim has been
sneezing and my nose is stuffy but I have until Monday to fight it off (when
my resistance is at its low point). I am keeping very warm. Visits will be
planned around my blood count. If it runs only 6 treatments I am done by
Christmas.
The doorbell just rang. Flowers from someone I have done a bunch of free
translations for but had to turn down last week. (I did send them a copy of
a translation similar to what they needed done for themselve and suggested
that they change the names and dates and forward to another translator I know
who would print and notarize the result. I did not want to make a special
trip to the bank for this.) Jim will take a photo of me and the flowers and
the computer I am typing at (a 486 in the bedroom with amber monitor).
My sense of smell is working fine today. Roses, baby's breath, goldenrod,
something purple..... ferns. Jim took three shots and went off to download
(with our 60K DOS software for downloading from Epson or Olympus of which i
have a copy for Linux as well - you can carry around a boot disk with the
software and still have room for some photos on it, and bypass Windows and
the hard drive on friends' computers. Jim uses DOS 3.3 for his boot disk as
it won't recognize the hard drives on recent computers - they are too large.)
Today I ordered a 3" twin size mattress topper which we can put on the harder
futon in the bedroom so Jim can have his living room back. (I put the 2"
model on his living room futon/couch as it has some foam padding in the middle
of it already). $126 uncovered, $220 covered according to the website. I
ordered uncovered at which point the salesperson said I could have a covered
one (quilted, mostly cotton, with zipper) for $44 extra instead of $220, plus
$20 shipping, standard UPS in stock 2-3 bus days. This is the factory.
Various distributors wanted $395 for the same thing, the local store $530.
The place that quoted me $130 covered revised it to $180 (higher density).
The insurance might pay - only costs the same as 1/2 hour of recovery room.
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keesan
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response 204 of 257:
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Sep 18 19:29 UTC 2003 |
I have asked John Perry to post the new photo of me with flowers, which
includes the front of my head this time. Or you can copy it from my home
directory until I delete it: sflowers.jpg. They smell nice.
Time to slice and dry the pears from the orchard at the end of the street
(Orchard St.). Jim is first fixing the fruit dryer (which I thought worked).
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keesan
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response 205 of 257:
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Sep 19 02:52 UTC 2003 |
Jim is now washing the fruit dryer and fixing the Sony boombox which he found
at the curb that needs new rubber tires for both tape decks. We did some
calculations and have determined that my immunity is highest the five days
before and five days after chemotherapy (but in the latter case I am tireder)
and that is when people should visit, which includes his sister who is looking
for a time to come visit everyone in Michigan. The calendar is now carefully
labelled as to when my immune system is working. I think we have both boiled
our colds out of us - Jim in the tub and me under blankets.
Does anyone reading this who knows someone who went through chemotherapy know
if the tiredness gets less in later cycles? I skipped today's hike to the
corner. The pear tree is a slightly further hike up a slight hill.
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glenda
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response 206 of 257:
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Sep 19 03:06 UTC 2003 |
If I were you, I would remove klg from the twit filter. He has been making
a lot of wonderful replies based on what he went through when he was fighting
the same thing. They are very well written, informative, and supportive.
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keesan
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response 207 of 257:
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Sep 19 03:19 UTC 2003 |
Thanks, I will attempt to do that.
I just finally found a website that explains what the prednisone is for - to
reduce the risk of allergic reactions and nausea from the other drugs. I am
still carrying around 5 pounds of retained fluid due to it and expect to be
very sleepy the day after tomorrow when I discontinue it (100 mg/day) judging
from what happens when you take 5 mg/day for fleabite allergies and then stop
(actually I think you decrease the dose gradually from something higher).
I finally found mention of 'wheezing' as a very rare side effect of Adriamycin
which is made by Upjohn in Kalamazoo. I have a phone number - if they can
hear my much-reduced voice I might try to find out of this is a permanent
condition. Difficulty swallowing is another one.
There is a long article in something Jim picked up at the cancer center
explaining that women feel a loss of self-esteem during cancer therapy due
the hair loss (they suggest wigs) and the fact that they are not supposed to
use makeup because it might cause infections, so the hospital is offering a
course on how to apply makeup safely.
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keesan
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response 208 of 257:
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Sep 19 03:54 UTC 2003 |
I extracted agora 167 and searched on klg but only found one interesting
response from 'them' near the beginning. The advice on cutting hair short
was alsready taken before my first shower here so that it would be easier to
wash and dry, a day before bits of it started to come out. I have been lucky
about gaining weight - the second half of the cycle my appetite returned and
the prednisone for the first four days of this cycle makes me hungry. The
week or so after I was discharged Jim was counting my calories to force me
to eat enough though. I am trying to walk enough to prevent any clots - what
causes clots?
I am not sleeping 12 hours but I spend a lot of time lying down and sometimes
sort of crash - can't even keep reading in bed so I close my eyes. Does thge
fatigue get less in later cycles?
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rcurl
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response 209 of 257:
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Sep 19 06:02 UTC 2003 |
Clots can form when circulation is too low. The blood ages but is cleaned
up by the spleen and liver, so circulation is needed. There is more discussion
of this at http://www.thrombosisonline.com/WhatIsDVT.jsp?id=100
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goose
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response 210 of 257:
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Sep 19 15:09 UTC 2003 |
Those cassette "rubber tires" are called pinch rollers, FWIW
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keesan
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response 211 of 257:
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Sep 19 15:31 UTC 2003 |
They are no longer rubber tires but sanded o-rings. Jim got the boombox fixed
and likes it - good tuner that gets Toledo with the antenna up, in stereo.
The tires are not the same as the pinch rollers - these are little skinny
round things like square o-rings that tend to get brittle, break, and wrap
themselves around moving parts, which they did here.
I am trying to walk around the house, I have a mattress pad to prevent
circulation loss in bed, and until yesterday I was also walking outside (and
will get back to that tomorrow). I hope to make it to the orchard soon. I
am also trying to exercise my legs while in bed. Other suggestions to prevent
clots? SOmeone else on chemotherapy also spoke of getting clots.
The doctor wrote me to use stool softeners if I have constipation. They would
have helped in the hospital but our diet here contains 10 times the fiber.
A large bowl of salad instead of three skinny slices of cucumber, whole wheat
bread, brown rice, 10 pears a day, dates, figs.
I wonder what I will feel like tomorrow when I am no longer taking prednisone
- lack of appetite and the need for 12 instead of 6 hours sleep? Tune in.
I lost 5 pounds fluid overnight but it comes back during the daytime - it
should not come back tomorrow either.
Does anyone know if Upjohn Pharmaceuticals is still an independent company?
They make the drug which is affecting my voice, if so (in Kalamazoo) but
Pfizer seems to be buying out everyone.
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gelinas
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response 212 of 257:
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Sep 19 15:41 UTC 2003 |
(The man page doesn't talk about the program's use of .cfrc and .cfonce;
perhaps extract filtered out the responses? The ones I found were:
39 47 92 110 143 169 173 202
)
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klg
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response 213 of 257:
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Sep 19 17:03 UTC 2003 |
as mentioned earlier:
Found that the effects of chemo were cumulative. More treatments=more
fatigue. (Had to get handicap pkg pass in order to avoid climbing
stairs in parking garage @ work. Workday dropped to 4 hrs, max.)
One month after treatment began, wound up in hosp for a few days over
N.Y. Eve due to clot in leg. Put on blood thinner (Coumaden) for about
6 mos. Also, wore anti-embolism stockings.
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glenda
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response 214 of 257:
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Sep 19 17:23 UTC 2003 |
Funny, I see at least 7-8 good responses from klg. And a few at the beginning
that were not on topic.
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cmcgee
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response 215 of 257:
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Sep 19 19:53 UTC 2003 |
Her loss if she wants to lie there with her fingers in her ears.
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keesan
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response 216 of 257:
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Sep 19 21:24 UTC 2003 |
Some of my reading on side effects also suggested cumulative side effects but
the doctors and other people have told me that the first one or two treatments
are the worst. I would not know about the first as I was so wiped out I could
not have told the difference between before and after. The second has
definitely made me more tired - my legs are more wobbly and I am shorter of
breath. I may try two short instead of one long walk outside each day. We
made it farther today than two days ago but it was not easy.
I can climb three steps holding on to Jim's arm, if I put both feet on each
step, slowly. Can't imagine going to work for 4 hours, as I cannot even sit
up that long. I expect to feel less tired as I get back more muscle. A 20
pound weight loss is more wearing when you are skinny to start with. Klg,
did you also lose muscle as well as fat? I look like a skeleton with skin.
I have edited the .cfonce file and will check over responses 110 143 etc.
If I cannot find those, I will try the 'ignore' program (and leave only three
twits in there).
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keesan
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response 217 of 257:
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Sep 19 21:31 UTC 2003 |
Responding to klg's 92:
They have not decided how many cycles I need, probably 6.
When my white blood cell count was at its lowest they said I should have had
Neupogen on the 6th day but I seemed to do okay without it so there is no
mention of it at present - maybe I won't need it. I managed without.
Radiation - I did not need it, the tumor disappeared with chemotherapy - klg,
where did they give you radiation?
Mental effects - I have noticed my memory is not working too well so when
people tell me something I write it all down (doctor's orders especially).
This may be related to falling asleep in the middle of things.
'Take life one day at a time'. I am taking it in shorter stretches than that.
While at the hospital I was concentrating on getting through mornings
(breakfast, Nystatin, brushing my teeth lefthanded, etc., took up three hours
time and energy).
I will check out klg's other helpful postings when I have more energy. At
about what point in each cycle does the energy level start to recover?
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keesan
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response 218 of 257:
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Sep 19 21:35 UTC 2003 |
Regarding klg's posting 110 - they mentioned the possibility of a port if
needed but there were no problems using a vein in my hand. They took out the
PICC catheter that was supposed to be there for a few months as it might have
got infected and perhaps the port might do the same since I am not doing
Neupogen. I would rather be port-free.
I am surprised they gave you Retuxan the first day - they said it would be
too much strain on me. Perhaps you did not have as many tumor cells for the
Retuxan to react with.
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keesan
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response 219 of 257:
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Sep 20 00:16 UTC 2003 |
Regarding klgs posts 143 and 169.
They did keep mentioning that it would be a problem if any of the chemicals
got out of my vein, but they watched closely to be sure this would not happen,
and picked a large vein in my hand (which hurt the whole time especially if
I moved it, but not terribly so) so there seems to be no need for a port,
which can cause its own problems if it gets infected.
I have several hooded sweatshirts and a hooded t-shirt so don't think I will
need a cap if my hair disappears. My mother (who had brain lymphoma) said
her grey hair grew back in brown after radiation. I read that the new hair
comes back at first in a different texture, more like a baby's hair.
Most of my hair is still there, including all my brows and lashes, but I do
find hairs in what I am eating.
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keesan
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response 220 of 257:
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Sep 20 00:24 UTC 2003 |
I just read the last two of klg's postings and will check out lymphomajournal
(which sounds familiar, I may have seen it already).
Thanks for all the information. How many days after each treatment does the
worst of the fatigue last?
Jim is attempting to replace the 3-CD player in the AIWA with a similar
mechanism that he saved from something else. The capstans differ, he says.
Now we have four of these largish boombox things with CD-players (the
CD-players on the other three work) two of which have incomprehensible preset
schemes. We are listening to the latest, with no presets. It did a nice job
playing a Mozart CD made us by ken (krj). Jim's house has only five rooms
(and a basement and garage) where they could conceivably be used so eventually
the overflow will go to Kiwanis.
My cousin asked what sort of novels I would like to read - he says he has some
good ones. I told him lightweight. Two friends from highschool and another
cousin and someone we were supposed to visit in Ypsi (he is growing odd things
and trying to make pawpaw wine) emailed and will try to time a visit to us
instead with my highest immunity. The raccoons are flattening his red and
blue corn.
I admired the little patch of wildflowers that a neighbor is letting grown
on the easement across the street - asters, milkweed pods. Jim wanted to pick
and eat the pods. They taste like greenbeans and feel like okra when cooked.
We took a bunch of them camping one year in Porcupine Mountains, in August.
In September they will make better pillow stuffing than food.
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keesan
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response 221 of 257:
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Sep 20 00:42 UTC 2003 |
I looked at lymphoma journal, written by someone who had it much worse than
I did, in fact everyone I have talked to seems to have had it worse but got
through it okay anyway, which is encouraging. The author said the fatigue
let up about midway through the cycle. He did CHOP, radiation, RICE (whatever
that is) and had a more advanced stage with multiple tumors not just spleen.
Had to be fed through the nose, lost his sense of taste, etc.
Boy am I lucky. (Also lucky that nobody in my family ever got depressed that
I know of, though we seem to have a strong tendency to cancer.) Maybe I will
be lucky and get more than 5 hours sleep tonight.
The journal author also stocked up on books and videos. I am getting tired
of lying on my back reading but can't do a whole lot else yet. Maybe in two
weeks I can weed what is left of the beans if they have not frozen. Jim is
hoping I will feel well enough for a science club lecture the second evening
after my third chemotherapy and is surprised I don't want to get out more.
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happyboy
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response 222 of 257:
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Sep 20 01:43 UTC 2003 |
re220:
/cues theme from Sanford and Son
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klg
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response 223 of 257:
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Sep 20 01:50 UTC 2003 |
Sorry to report the experience that after the first treatment it seemed
they'd be a piece of cake. It wasn't. Remember, they're pumping poison
to kill the tumor. Recovery took longer w/each tx.
Went from about 175# to about 150#. Don't know how much was
"muscle," since couldn't really exercise much at all. (Should prob be
about 160/165. and am back up to around 175 again.)
Tumor was medialstynum (central upper chest). Radiation was on upper
chest & up through the l. side of throat. Tumor may have been dead, but
they wanted to make darned sure, so they fried the sucker.
Chemobrain- Wasn't just memory loss, it was feeling 2 steps behind in
conversation. After I complained to oncologist, he referred to a
neurologist, who couldn't find anything organic. Had a MRI, too. (That
was my second MRI - first was for flashes of light in my eye, but drs.
believed it was "migraines" (no headache, just flashes).
No idea why rituxan was administered with first treatment. Seemed like
it was routine.
The other people who've said they have/had ports never mentioned
infection problems.
Yeah, new hair was very soft. Never lost 100%, though. Had fringes
around the sides. (Unfortunately, was time for driver lic renewal
shortly after last tx, so the pic ain't too good.)
Was taking an econ class. Must have had cancer for the entire
semester, but didn't know until Nov. Final exam was after 2nd chemo tx.
On the way there, had to tell the drive to turn around & go back home.
Too tired.
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keesan
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response 224 of 257:
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Sep 20 15:49 UTC 2003 |
If you were injecting Neupogen three times per cycle you would have had much
higher immunity than I will be having without it, therefore less chance of
an infected port. The nurse watched my vein very closely while injecting the
Adriamycin to be sure nothing leaked out.
I continued to work (at home) despite symptoms from April through August but
ended up bedridden the last couple of weeks while waiting for one test a week
to be done. Amazing how much you can accomplish despite exhaustion.
You seem to have been through a lot worse than me as I did not need radiation.
Perhaps I am therefore getting lower doses of the chemicals and won't be more
tired after successive treatments, if I am lucky. They say everyone reacts
differently. I was a lot more tired first cycle but they say that was due
to the cancer not the treatment. And I hope gaining weight/muscle will make
me less fatigued, but thanks for the warning.
I am considerably less tired today than the previous four days. No more
prednisone this cycle. I slept from 10 to 11 and 2 to 3 and 5 to 9 and had
a big breakfast. No appetite loss or fuzzy tongue yet but we both are
fighting off a cold and I have an inflamed throat now - luckily my immunity
is not supposed to crash until early next week. Staying very warm helps.
klg, how many months after therapy ended did you continue to be fatigued?
Are they doing blood tests or CT scans on you still?
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