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Grex > Health > #89: Sindi Keesan's Lymphoma Journal Part 3 |  |
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| 25 new of 475 responses total. |
tod
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response 349 of 475:
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Mar 18 16:21 UTC 2004 |
This response has been erased.
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keesan
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response 350 of 475:
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Mar 18 17:46 UTC 2004 |
My fingernails never fell out or got weaker. Either they got stronger, or
I am still too weak to cut them properly.
The cursor now works in rxvt/pico. Turns out that when you telnet to grex
and have a white on black screen, with rxvt set to black on white screen with
default black cursor, you don't see the black cursor on the black screen at
grex. I now have a green cursor in rxvt and the next linux version will have
a colored cursor. I also managed to get rid of the scrollbar with +sb (-sb
adds it, but that is the default unlike xterm where no bar is default).
None of the X fonts I have seen is as readable as the standard console font.
In one the a looks like an o, in another the m and w are spindly.
Different body parts apparently regenerate at different rates. My fingernails
do not seem to be growing at 1/2" per month. Apparently different types of
taste bud also regenerate at different rates because some days things taste
better than others. I have read that it can take 3-6 months to get back to
normal, or even a year. Probably depends on what sort of chemotherapy was
used and how often and how long.
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bhoward
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response 351 of 475:
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Mar 18 23:30 UTC 2004 |
Re#304/305 The thing you are talking about is a kotatsu and these days is
heated by an electric heater, not coals. I've seen nowhere outside of the
innaka (countryside) and demonstration museum houses that use the coal
kind. Too dangerous in the old days, even more so with the more cramped
nature of current Japanese homes.
Fusama with shoji (sliding doors covered with translucent paper) are still
common in most houses and apartments these days. For better or worse,
modern houses are still quite drafty...a boon in the summer, frustrating
in winter.
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twenex
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response 352 of 475:
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Mar 18 23:32 UTC 2004 |
Does the island Tokyo is on include some innaka?
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bhoward
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response 353 of 475:
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Mar 19 08:55 UTC 2004 |
Yes, quite a lot actually.
About two thirds of the land here is mountainous. Most of Japan's
population tends to cluster in urban areas sprawled across the other
third, primarily the Kansai and Kanto plains on Honshu (the main island)
and a few other places on the other islands. I believe ~ 60% of the
Japanese live in the Tokyo-Osaka belt with (presumably) the remainder
concentrated in areas like Kagoshima/Nagasaki, Hiroshima and Sapporo.
As soon as you step anywhere outside of those areas, you are in the
countryside though some places are clearly more "country" than others.
My informal measure is to count the number of warabiki yane (traditional
thatched roof houses) in an area...the more you find, the more isolated
and from my perspective, interesting it tends to be.
You have to look carefully at the house shape, however, when using this
method as most thatched roof houses were long since hidden under metal
roofs (typically right over whatever thatching was in place at the time
of covering).
Realistically speaking, there are two radically different (arguably three
-- which I'll get to momentarily) Japan's to visit when you come here.
There are the super futuristic, highly crowded, manga-esque urban
areas best exemplified by Tokyo. Then there is the largely depopulated
countryside, mainly in the mountains. Sadly, the latter category is
getting quite hard to find in its most pure form due to a combination of
nonsensical powerline routing, useless public-works construction projects
strewn randomly across the innaka and an increasing proliferation of
pensions, vacation homes, etc.
The third category I mentioned above would include Okinawa Prefecture,
formally the kingdom of the Ryuku Islands. Technically part of Japan, it
historically was a distinct culture with it's own language (grammatically
related to Japanese with much vocabulary contributed from China) until
came under partial political control of Japan during the Tokugawa (Edo)
era and under complete control after the Meiji restoration. In spite of
the best efforts of the Japanese mainland government and the US military,
Okinawa remains a fantastically beautiful place and well worth visiting.
Another interesting place to see "country" are the Ogasawara islands
directly south of the main part of Tokyo around the same lattitude
of Okinawa. Legally part of municipal Tokyo but with 1000+ mile of
separation and tropical climate, they have a rather different feel
to them.
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twenex
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response 354 of 475:
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Mar 19 13:13 UTC 2004 |
Cool. Thankyou for that, it's very interesting. Was hte culture in Okinawa
you mention the Ainu people?
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gelinas
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response 355 of 475:
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Mar 19 22:36 UTC 2004 |
No. The Ainu were driven north to Hokkaido. The Ryukyuans are different.
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twenex
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response 356 of 475:
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Mar 19 22:37 UTC 2004 |
Ah.
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klg
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response 357 of 475:
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Mar 24 17:34 UTC 2004 |
keesan may wish to check out page D1 of today's WSJ regarding cancer
survivorship.
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keesan
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response 358 of 475:
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Mar 25 18:03 UTC 2004 |
I don't have WSJ - is it online? Would you summarize please?
I am pleased to report that I am no longer getting hot flashes every 45-50
minutes. It is 1.5 to 2.5 hours between them now. Maybe they will stop
before the first heat wave. I can sleep longer without waking up roasting.
My saliva seems somewhat less sticky now, but starches and fruits still don't
taste good. They don't taste nearly as bad as they used to.
I have to get back on a bike soon. I have a heel spur that is hurting again
now that I am walking longer distances. I think it hurts less than it did
to sit, but perhaps it is the change in chairs. We found a nice one being
thrown out by a store, and put the one from Kiwanis at the curb (where it went
away) because it was too wide to fit under the desk. My hands where I rest
them to type (on a pad) are still sore. I am trying to rest on my forearms
instead.
It is now 2 months since my Jan 26 chemotherapy. I read that it takes 2-3
months or up to a year to recover from chemotherapy. As long as it continues
to work, I don't mind the few residual side effects so much. Though it would
be nice to get my voice back stronger, and the tingling/numbness in my
fingertips is not really a problem but I wish it would eventually stop.
The main remaining problems are due not to treatment but to aftereffects of
losing so much weight from the disease itself - muscle and padding.
Jim was reading in a library magazine that the single biggest problem for
women with breast cancer is that their hair falls out during treatment. That
one never bothered me, except for being a bit messy. He read something about
applying electromagnetic fields to boost growth hormones in the follicles.
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klg
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response 359 of 475:
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Mar 25 21:00 UTC 2004 |
re: "#358 (keesan): (1) I don't have WSJ - is it online? Would you
summarize please?
(2) It is now 2 months since my Jan 26 chemotherapy. I read that it
takes 2-3 months or up to a year to recover from chemotherapy.
(3) Jim was reading in a library magazine that the single biggest
problem for women with breast cancer is that their hair falls out
during treatment."
(1) If one has a subscription. You ought to read it yourself. The
library certainly has it.
(2) That would be a *minimum* estimate!
(3) Depending on whether the treatment was surgical, chemical, or
radiation.
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keesan
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response 360 of 475:
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Mar 26 21:07 UTC 2004 |
How long did it take you to recover, and what symptoms disappeared first?
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klg
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response 361 of 475:
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Mar 27 23:26 UTC 2004 |
(1) If recovery is defined as 100% pre-cancer level, then it is still
progressing.
(2) Can't say what symptoms disappeared first because it was almost 2
years ago and am not into record-keeping in that regard.
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keesan
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response 362 of 475:
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Mar 27 23:33 UTC 2004 |
Do you have any vague recollections of how things progressed? And what has
not yet recovered? I still have rather weak muscles, do you?
Ihave heard that the longer you go without a recurrence, the better your
chances of no recurrence. I am glad to hear that it is 2 years. I talked
to 2 people whose treatment worked only for 2 or 3 months The 3-month one
had stronger treatment (involving transplanting his own bone marrow after
using chemicals that destroy it) and has been fine now for 5 years. The other
one was sitting there worrying and was glad to hear about the first one.
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klg
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response 363 of 475:
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Mar 28 21:34 UTC 2004 |
Actually, recollections are rather muddled. Muscles aren't week.
Evening tiredness & weakened memory. Suggest you refer to WSJ article
for where to get more info.
Radiation treatments began 3.5 wks after chemo stopped and went for
4.5 wks. Then, 1 wk later, father in law died. Two mnths later, I
was in a head-on crash & totalled a car. 1.5 mos. later, father
entered hospice and died a mo after that. Had a lot of distractions,
wouldn't you agree?
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keesan
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response 364 of 475:
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Mar 29 01:23 UTC 2004 |
Wow, you really have had it rough, klg.
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keesan
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response 365 of 475:
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Mar 29 22:35 UTC 2004 |
I just read a study of diffuse large cell lymphoma and they give various
statistics. For high-grade DLCL 61% experience 'complete remission'. Of the
high-risk category (which I think I was in) 44% have CR and 26% survive five
years. Since I had CR (no nodes remain enlarged) my 5-year survival is
greater, about 60% (divide 26 by .44). Risk factors include being over 65
and having an advanced stage of the disease (which I did by all measures).
Of those who have CRs, in other studies, 20-50% will have relapses, which
means I have at least a 50% chance of being permanently 'cured'.
Of those with relapses, the same therapy will produce another remission in
20-35% but only for about a year or so. A stronger therapy involving removal
of your own bone marrow stem cells, treatment with chemicals that destroy
these cells, and transplanting of your own cells, gives 53% of the relapsed
patients who were originally cured a 53% chance of surviving 5 more years.
So I figure I have a 75% chance of being around for quite a while, or higher.
The Rituxan treatment increases the odds somewhat.
I will try not to think about this a lot, but my odds are pretty good compared
to a lot of other people with other types of cancer.
Lymphoma can be caused by various viral infections, including herpes. I have
a cold sore once in a while. A book on oxygen says that half of people with
cold sores (herpes simplex) are likely to develop the oxidized protein plaques
which cause Alzheimber's disease in old age. I will be happy to achieve old
age despite this risk.
Back to my translation on oncogenes, which produce certain protein products
that can be used in the diagnosis of different types of cancer and of the
stage to which it has progressed.
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tod
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response 366 of 475:
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Mar 29 22:48 UTC 2004 |
This response has been erased.
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keesan
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response 367 of 475:
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Mar 29 23:22 UTC 2004 |
I don't understand your question. Viral infections can cause lymphoma. This
might be because the body creates a lot of free radicals when fighting off
the infection, and the free radicals can damage DNA. Maybe it is because
lymph cells participate in fighting infections and multiply more during an
infection so have more chances of mutating. Maybe some viruses actually get
into the cell and insert copies of themselves into the DNA randomly thereby
causing mutations. The website did not go into this. Sun has similar effect
to infections, in producing free radicals, which is why overexposure to the
sun makes you feel like you have the flu.
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tod
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response 368 of 475:
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Mar 30 00:43 UTC 2004 |
This response has been erased.
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keesan
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response 369 of 475:
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Mar 30 03:26 UTC 2004 |
I doubt that anyone knows. There are still a lot of mysteries, the human body
being a major one. People are constantly developing cancer, except most of
the time the body manages to kill the cancer cells. People with poor immune
systems, such as people with HIV or those taking immunosuppressants after
transplants, are much more likely to not keep the cancer from getting out of
control. Sometimes if you have one infection, your body is busy fighting that
and other infections, or cancers, can get out of control.
Chemicals can also cause cancer, as can X-rays - anything that damages DNA.
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tod
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response 370 of 475:
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Apr 1 00:11 UTC 2004 |
This response has been erased.
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keesan
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response 371 of 475:
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Apr 1 02:26 UTC 2004 |
I just read that 1/3 of cancers worldwide are caused by infections. The
immune system generates a lot of dangerous chemicals to fight off the
invaders, which can also damage the body itself. Since the lymph cells are
part of the immune system, they are exposed to these chemicals and can have
their DNA damaged. The compounds in tobacco smoke also damage DNA to the
point where smokers can have up to 50% more of these products of broken DNA
in their urine. I wonder if smokers are more likely to get gout, since the
uric acid that causes it is a breakdown product of DNA. People with gout are
supposed to avoid foods with rapidly dividing cells such as asparagus and
mushrooms, because they have more DNA in them (nucleic acids).
Free radicals are also what causes aging. Ultraviolet light causes your skin
to age faster and get wrinkled, as does smoking.
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klg
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response 372 of 475:
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Apr 1 17:59 UTC 2004 |
(Did the Chicago 7 know that?)
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keesan
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response 373 of 475:
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Apr 8 09:31 UTC 2004 |
It is now a little over 2 months since my last chemotherapy (Jan 26) and the
side effects are mostly still with me - slight pain in the spleen area where
the tumor was, and in my hand where I had a lot of IVs. Bleeding during
defecation continues (probably due to my intestinal lining not being recovered
yet - and I still have a somewhat sore tongue and runny eyes and nose) but
the pain has mostly stopped as of a month ago. Hot flashes down to about once
every 2 hours instead of 45 minutes. I am sleeping better, on average.
It still hurts to sit, and where I rest my hands to type, but a couple of days
ago it started hurting less to sit, so yesterday we walked to my apartment.
Jim is fixing the washing machine there so that I can move back once it gets
a bit warmer. I cleaned up some (he rearranged things when friend stayed
there and I found my pots and pans on the basement floor) and recycled a lot
of papers that were relevant last time I lived there in July. And we put air
in my bike tires and I was going to walk it back, but I decided to try riding
and discovered my biking muscles are still in better shape than my walking
muscles, so I biked all the way back (which is mostly downhill). First time
since July I have been on a bike and now I am no longer limited to a 2 mile
radius. Hurray!
Food is tasting closer to normal but I am still not gaining any more
weight - 114 after supper with clothing on. My saliva is not as sticky as
a couple of weeks ago. Things are gradually returning to a balance.
My yard could use weeding, but it may not happen for a while. I still
have trouble getting up after I get down. There will probably be no garden
this year, and I don't expect to be strong enough to go on vacation or even
swimming (2 hours by bike) but it will be really nice to be able to get to
the river and local parks again.
Next checkup (CAT scan) May 18.
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