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| Author |
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| 25 new of 257 responses total. |
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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keesan
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response 225 of 257:
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Sep 20 15:53 UTC 2003 |
Jim is still trying to fix the AIWA. He replaced the CD mechanism with what
he thinks is a good one from another machine but it still would not spin after
putting in the CD. (It spins without any CDs). I think it is an electronic
problem and have asked him to put it back together so I can use the remote
control on it again instead of fiddling with the SONY dial tuner (where the
CD player does work). We also have about 5-10 tape decks that it would be
nice to give up on to make space - won't run out of things to do while we are
both stuck at Jim's house. (Then there is the mess upstairs and downstairs
once I can manage stairs). I am already getting a bit tired of reading all
the time.
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rksjr
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response 226 of 257:
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Sep 20 18:33 UTC 2003 |
The Google Groups web site (groups.google.com),
search-focused on the keyword "lymphoma", accesses Usenet
postings thereon, some of which may be authored by the
recently recovered:
http://groups.google.com/groups?q=lymphoma&num=100&hl=en&lr=
&ie=UTF-8&sa=G&scoring=d
For your convenience I have a link to the above URL address
on my site at:
http://www.cyberspace.org/~rksjr/
The link is titled:
Google Groups Search: lymphoma (groups.google.com)
The National Library of Medicine web site can also be useful
in accessing medical journal article abstracts:
http://gateway.nlm.nih.gov/gw/Cmd
Get well soon!
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keesan
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response 227 of 257:
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Sep 20 18:56 UTC 2003 |
I don't think I have the stamina to read medical articles yet (I do a lot of
such research normally as I am a science translator, including medicine) but
will check out the google groups link at your site, for which many thanks.
Chemotherapy seems to still be as much an art as a science.
Today I walked twice as far as yesterday and did not nap, despite a sore
throat which I hope clears up before my immunity drops in a few days. Jim
is off picking up more food and some warm clothing from my apartment and then
I will attempt to take a hot bath (sitting on and against lots of padding).
The hospital charges came today (to be discounted slightly by PPOM).
Previously charges for blood tests, CAT scan and spleen biopsy total about
$8,000, and there will be a charges for a few more blood tests and doctors'
visits and chemotherapy in a private room with a bed (another $2000?).l
Hospital Inpatient Bill
Admitted 08/23/03, Discharged 09/01/03 (Labor Day)
Daily Room Charges
Semi 3 days at 872 2616
Private 6 days at 872 5232
(no extra charge for private room if you are a cancer patient since they are
all private rooms because of the risk of infection due to low immunity)
Ancillary charges (procedures, tests, materials......)
pharmacy 2795
drugs used with radiation 292
medical-surgical supplies 1140
sterile supplies 71
laboratory 8534
pathology laboratory 2164
diagnostic x-ray 934
nuclear medicine 932
cat scan 1201
operating room/treatment rm/other 1384
blood storage processing 1089
imaging services 1434
respiratory services 1210
pulmonary function 2410
other diagnostic services 554
Total hospital charges 33,992 (plus change)
I have not quite succeeded in matching this up to what happened but
it is something like:
drugs - antibiotics and chemotherapy and saline/bicarbonate solution
drugs - antinausea pills used with chemotherapy?
(no charge for the vitamins, for some reason)
IVs and PICC line
dressings for above
analyzing all the samples of fluid and bone (lung drainage, biopsy)
X-ray of lung fluid, PICC line (maybe a few others, I lost count)
nuclear medicine - the MUGS scan (which involved radioactivity)
CAT scan - of chest
operating room .... the bone biopsy and lung fluid drainages?
blood storage processing - 3 units of blood as two transfusions
imaging services - the ultrasound that sounds like whale cals
respiratory services - the oxygen tube to my nose
pulmonary function - ? was this the fluid drainage (twice)
other diagnostic services - the blood draws?
This totals about $40,000 so far not counting a few more blood draws
done outpatient and the second chemotherapy session. It will cost me only
$6500 plus maybe $100 for the drugs from K-mart (prednisone, allopurinol) and
mail-ordered (Prilosec) and the OTC things (antifungal, vitamins). Not
counting the fact that I cannot work for a while and Jim is home taking care
of me. I wonder how other people manage to support themselves while sick.
I have money to live on because my parents both died (my mother in 1990) of
cancer and I inherited half of what they had saved. (I would rather have had
parents, of course). A friend without insurance is filing for bankruptcy
rather than selling his house to pay for heart surgery (only about $40,000).
Maybe another $10,000 for four more chemo sessions and who knows what it will
cost me over the next ten-twenty years for annual CAT scans or whatever they
will be doing as followup. Eventually Medicare will start paying something.
And the home nurse visit was $130 and that package of dressings could have
been another $100 or more. I am saving the insurance company a bundle by not
going into a nursing home for a couple of weeks after discharge from hospital,
so maybe they won't object to paying for the mattress pad. The nurse herself
got $20/hour for maybe two hours of her time, the $130 being a minimum charge
by the operation itself.
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keesan
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response 228 of 257:
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Sep 20 19:10 UTC 2003 |
The google groups link includes something about the longest-lived ferret to
have lymphoma, and a cat with lymphoma, and various other semirelevant things,
also someone's question about whether it is safe to take multivitamins or do
they interact with the drugs. I was instructed to take multivitamins so they
must be safe and I will post this information once google finishes sending
me the URL to complete my signup.
The hospital has a lymphoma support group Tuesday evenings. I am not yet
strong enough to attend support groups.
The other people posting, as usual, seem to have worse cases than I do,
requiring radiation etc. I continue to feel lucky. Perhaps because I was
expecting to get cancer of some sort in my fifties, considering the family
history of it, and this is the easiest sort to treat.
There were some articles about a cluster of lymphomas at a school in CA
possibly due to an oil well, and something else about Agent Orange maybe
causing cancer. I am blaming mine on low resistance due to working on the
house we are building in the cold (the building dept. started pushing us to
finish) and getting a really bad case of something I assumed was flu, that
probably messed up my immune system long enough for the lymphoma to start.
It suddenly got worse after another virus this April which probably lowered
my resistance again. Viruses do that. I was coughing persistently from April
through July.
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keesan
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response 229 of 257:
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Sep 20 19:38 UTC 2003 |
I found an interesting article about another (new, animal-tested only)
monoclonal antibody which when used together with Rituxan doubles the
remission time and cure rate. It binds to proliferating b-cell or t-cells
which are mhc class II positive (probably they display some protein on their
surfaces) and can kill them even if your immune system is not doing well.
I hope I don't need this drug 7 years from now but iut is nice to know they
are working on new drugs. At the google groups link, thanks again.
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klg
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response 230 of 257:
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Sep 21 00:34 UTC 2003 |
Strength return was pretty gradual. Delayed by radiation treatments.
CTs 2x/yr. Next coming up in Nov. Dr. visits 4x/yr
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