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| Author |
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| 25 new of 257 responses total. |
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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keesan
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response 231 of 257:
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Sep 21 13:04 UTC 2003 |
Thanks. Looks like I will be meeting my deductible every year at that rate
- $5000 for CAT scans and who knows what for the doctor. How many years does
the 2x/year continue?
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keesan
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response 232 of 257:
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Sep 21 13:10 UTC 2003 |
I got a few more 'explanation of benefits' statements from the insurance
company. The PPOM discount is pretty good - they are getting about 50% off
for some sort of inpatient care (on some smallish charges), paying $467 for
something that was billed originally at $850 (diagnostic services). It does
not seem particularly fair that people without insurance have to pay the full
charge but the insurance company only pays half of that.
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tpryan
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response 233 of 257:
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Sep 21 13:36 UTC 2003 |
*their argument*: insurance companys pay near 100% of the time.
The un-insured pay at a much lower rate.
Well,duh!
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keesan
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response 234 of 257:
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Sep 21 17:43 UTC 2003 |
More insurance company statements - for some things they are getting more than
50% off. I have not seen their discount for the room yet. The blood tests
get discounted about 80% or more - one test was $7 instead of $70 or so.
Yesterday I took my first bath in a few months, sitting on something padded
that kept floating upward if it got loose. A bath is warmer than a shower,
takes a lot less energy and balance (no need to hold onto the wall and I can
use both hands) but still took me about an hour as I kept running out of
breath and energy. It may have helped my cold, which has progressed from
stuffy nose, chilly, sneezy and sore throat to blowing my nose all the time.
Last cycle the blood draws showed that my imunity (neutrophils) started to
drop exponentially (from 23 to 15 to 8) on the fifth day. Today is the
seventh and I have thrush (fungal infection of the mouth) again and my gums
and tongue and lips ache a bit and it hurts my teeth to eat and this will be
treated with Nystatin for the next 12 days or so. My neutrophil count on day
11 will be about .1 then start to double (1.2 three days later).
They city has returned the $5000 bond they took from us in 1994 for the house
we are building and I will pay the deductible with it. They agreed that the
house is now properly enclosed (it had no walls in 1994) so they won't need
the money to tear it down if abandoned. It was returned to sender and came
back again for some reason. We are not supposed to stop working for more than
6 months but I explained that I would have trouble working this winter.
Jim is calling me for lunch.
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keesan
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response 235 of 257:
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Sep 21 22:19 UTC 2003 |
Jim went to special trouble to get low-sodium sprouted grain (and lentil)
bread which I cannot eat because it sticks between my teeth and I am supposed
to stop flossing soon to avoid bleeding. I don't need low sodium this week,
I need mush. Whatever I eat hurts my tongue and mouth and teeth. I had to
give him back his crunchy brocolli and dried mushroom soup and eat baked
peeled red peppers instead. (He got two enormous bags of them at market and
is baking, peeling, and freezing them as treats over the winter). In
Macedonia at this time of year everyone is busy baking peppers and putting
tomatoes in jars and pickling beets so they will have winter vegetables. They
bake the peppers over large metal pans (wood-burning?) outside and it smells
wonderful, as does Jim's kitchen. He is also peeling, slicing, and drying
pears from the orchard. I am not helping, my hands are shaking too much and
I don't dare cut myself. I might try to peel cooled peppers later.
We also bought some commercial preserved red peppers in the form of 'ayvar'
which is ground up red pepper and eggplant and sometimes tomato and garlic
and other spices. From Jerusalem Market.
I fell asleep three times today. The prednisone wore off. Last night I got
woken at the familiar hours of midnight and four am but not by blood pressure
readings - some large and very noisy truck running just across the street for
half an hour each time. A mystery.
I also lost the fluid gain and am still at 99 pounds. This is probably the
week where people claim to lose their appetite. Food not only hurts, I can't
taste through the fuzz. But I don't think I have lost my appetite. I am
eating less often because whenever I eat I need to brush, floss carefully,
rinse my mouth with warm saltwater, and it takes too much energy.
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klg
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response 236 of 257:
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Sep 22 01:27 UTC 2003 |
Don't know about the future CT scan schedule. Gotta ask the doc in Nov.
Those CT smoothies are really good, tho.
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keesan
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response 237 of 257:
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Sep 22 13:09 UTC 2003 |
You are welcome to the 16 oz of my next one. I smelled like it for 10 days
afterwards as it comes out in sweat.
No trucks last night but my runny nose kept me awake a lot. Can anyone who
has had a cold recently tell me how long the runny nose stage is expected to
last when you have an immune system? I won't have one by Thursday. Jim is
still at the stuffy sinus stage - I caught it from him. He says he is tired.
Today I looked at my tongue after brushing the white slime off my teeth. My
tongue is yellow like the Nystatin antifungal solution I have had to start
using again. Pretty persistent dyes but it seems to help some.
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tod
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response 238 of 257:
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Sep 22 15:24 UTC 2003 |
This response has been erased.
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keesan
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response 239 of 257:
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Sep 22 17:46 UTC 2003 |
My platelet count also seems to be down (along with neutrophils). I will
switch to toilet paper for my nose too and not blow too hard rather than
washing out the cloth handkerchiefs.
Jim is also napping. I seem to have a double whammy on the tiredness this
week but my nose has slowed down a bit.
We were going to have a big excursion today to the local branch library and
the bank and Kroger (Jim might leave me at the library) but I will wait for
dryer weather. I am doing my hiking in the house instead, feeling sort of
like a caged lion. It is about 25 feet from one end to the other if you avoid
the furniture along the walls. In my part of town a block is 300 feet, or
6 house-lengths. I am walking 'one block' several times a day with no need
to lie down every 50 feet (or use a walker) and then doing some very shallow
knee bends. Also stretching and leg lifts. Jim's block is about twice as
long and I have been to both corners and back on the same day - 24
house-lengths at a time - but it is not as level as his floor.
As you might guess, I am getting a bit bored lying in bed reading.
Jim heard somewhere that it averages 10 city blocks to a mile - is this
correct for New York City, he asks.
The dried pears were cut so thin that they are like pear chips. They came
out much sweeter than the pears. The AIWA is now in pieces in two rooms.
It is about 90% air and the rest contains an enormous transformer and heat
sink. We could probably use it for the next block party and be heard a few
blocks away. The speakers (at our one-room volume) don't sound as good as
some smaller older ones in the SONY. They can probably take more overheating.
Jim wants me to start climbing stairs. I can do three with help. He has an
exercise bike in the basement that he was going to convert so that he could
use it to grind flour (with the hand-cranked flour grinder). I wonder if I
can set that low enough to use it. (Not that I can make it to the basement
or that there is space for it upstairs, of course). We have a very highly
padded bike seat (from JEP, who discoverd that a lightly padded skinny one
was more suitable for real biking). I run out of breath quickly.
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