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Grex > Health > #89: Sindi Keesan's Lymphoma Journal Part 3 |  |
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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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keesan
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response 374 of 475:
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Apr 14 00:25 UTC 2004 |
This past weekend I was able to walk to both Scott's grex potluck and Aruba's
grex staff meeting (which prompted offers to drive me home and attempts to
feed me). My legs are still weak and I am trying to do a few deep knee bends
once in a while, holding onto something. Last time I did 3 and I will try
for 4. Biking is easier.
Fingertips still a bit numb, no noticeable change, no problem.
My voice was worse for a week which I think is due to a cold but today it is
getting better despite the sneezes. I just listened to my own voice on a
cassette tape and it sounds high pitched and weak compared to now.
I did some more reading on hot flashes at several sites. They start in the
neck and face and progress to the chest and waist. They start in the waist
and chest and progress to the neck and face. You should wear cotton and not
wear turtlenecks. (I am wearing several layers of wool over a turtleneck).
You should take off layers to cool off, or stick your hands in ice water. I
just take off one or two wool hats and unzip my wool vest. The hot flashes
can be several times a day early morning and late evening. Or as often as
every 90 minutes. I was getting them every 45 but at last timing it was just
over 2 hours. They are brought on by a long list of things like alchol, spicy
food, stress, and overheating. I don't do any of that. They occur at
irregular intervals. I could almost set a clock by mine. They last 2 months
to 2 years. 2-3 years but up to 6 years. A few months to as long as 15-20
years. They are triggered by exercise. They are reduced in intensity by
exercise. It helps to have more fat cells which make estrogen-like hormone
out of something else. Muscle cells make estrogen-like hormone. You should
stay in a cool 68 degree room. We don't have any rooms that cool, ours are
50-55 degrees. It is worse in summer. I have only been through a winter and
hope it does not get worse in summer.
I get the impression that people have highly variable reactions to 'the
change'. Sudden menopause due to radiation, surgery, or chemotherapy,
including prostate surgery and chemotherapy, leads to more severe hot flashes.
It still hurts to sit but I don't know a good way to translate standing up,
and besides that makes my feet hurt.
Tomato sauce still tastes quite sour. I am up to 117 pounds with lots of wool
and cotton clothing, after three days of feasting, which I think translates
to about 115 without clothing or maybe a bit less and is more than I have
weighed until now in 4 years.
Tamoxifen can cause hot flashes. You can get hot flashes when you stop taking
tamoxifen. Luckily I don't have to take any drugs any more. Hot flashes
might be useful in air conditioned buildings, I suppose.
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keesan
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response 375 of 475:
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Apr 17 02:00 UTC 2004 |
Two months since the PET scan, almost 3 months since the last chemotherapy.
Supposedly it takes at least 2-3 months to feel normal. This week has been
somewhat of a watershed. I can bike again (or I could until Jim started to
move all the parts from my frame to one that is less worn out). So I am back
to walking, and today we went through Eberwhite Woods, which is full of
patches of yellow trout lily and some small white flowers which I think are
Spring Beauty (claytonia) or anemonella. Two days ago we biked to Dolph Woods
and saw bloodroot (large white flowers) and just-emerging mayapple leaves,
like folded umbrellas.
Today's trip was to bring a carton full of Chinese restaurant take-out
boxes to the local Chinese restaurant to trade for two spring rolls. They
decided to give us two free soups in addition. We walked back via another
woods near I-94, where there is a pond full of calling frogs (difficult to
hear over the highway racket) that might be chorus frogs. We startled a
garter snake. The easements next to Maple Road are carpeted with purple
violets that you can sometimes smell over the highway fumes, and a few white
ones. We stopped at the Chinese food store for vegetables. The guy at the
register knew the numbers in English (4, 3) so I showed off my numbers in
Chinese and he gave us some Chinese peanuts and I said 'thanks' and 'goodbye'
which he repeated properly.
I trudged back. One mile still wears me out, but my muscles look they
are back. I am up to 115 pounds after supper, which is probably about what
I was before I got sick last year January (112 before breakfast then). I
wonder where it has gone as I can't see any body fat and I am still short on
muscle.
This week's big progress is that my voice seems to be back. It was
not quite back on Sunday and I was starting to think it might stay weak.
I am still hoping it won't always hurt to sit and that my digestion
will eventually recover and my fingertips stop feeling numb, but these are
not serious problems. Still sore in the area over where my spleen probably
got enlarged to, nobody knows why. Scar tissue? I am going to try to do the
Huron River canoe cleanup tomorrow. We might skip the mattresses this year.
And I might just snag things with a pole instead of climbing onto the bow and
leaning over. With luck there will be turtles. Today we saw orange and black
butterflies (monarchs migrating?) and what looked like but is too early for
a swarm of fireflies (no light).
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mary
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response 376 of 475:
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Apr 17 11:54 UTC 2004 |
Were the Chinese take-out boxes used? Will the restaurant reuse them?
I'm glad you are feeling so much better. It's a long recovery.
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keesan
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response 377 of 475:
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Apr 17 14:51 UTC 2004 |
New boxes. They were in stacks with brown paper wrapping. The neighbors who
were moving had bought a bunch to use somehow at their wedding.
Today I plan to bike an old 3-speed into Kiwanis, and then walk to the river
if it is not raining. We will bring in the Japanese wordprocessor too.
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keesan
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response 378 of 475:
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Apr 18 01:05 UTC 2004 |
We biked to Argo Park where we got our canoes last year, by rather a long
roundabout route, southeast to Broadway Bridge because Jim did not want to
lift our bikes over the railing so we could cross at Barton Dam. Turns out
there is no longer a building to rent canoes from at Argo, so we had to bike
back to Broadway Bridge (past Barton Dam, which was at some point converted
to a walk/bike bridge with shallow ramps instead of just stairs/railing).
About an hour later we arrived at Gallup Park where they let us take canoes
out for two hours after the cleanup ended. Jim's first beercan had something
wriggling in it which turned out to be a crayfish. We headed towards Ypsi
because nobody else had done that stretch, but it was pretty clean already
and we only found a bunch of cans, plastic and glass bottles, assorted
plastic, and part of a kite and some candy wrappers, in two hours. We passed
up two large dead fishes and a very heavy looking rolled up wire fence that
looked more than the 650 pound limit for our canoe.
Our only interesting haul this trip was a very rusty flattened trash
can in the water, covered with mussels, which Jim got onto the canoe and then
out of the canoe at the other end. When I asked what to do with our trash
the guy said to bring it to the trash can. I said it would take two people
to bring our trash can there.
We then biked most of the way back and up a hill to the music school
for an early music concert. Jim finished off the decorative collard greens
with hummus at the reception. Great concert. I somehow made it all the way
back. Not bad for my second bike trip of the year (not counting the one to
my apartment). Jim picked up a few interesting finds on the way back (a large
yellow flashing light etc.) and then someone steered us to an after-yardsale
giveway. We passed on both microwave ovens but got three phones, a scale,
a nice warm hat and gloves and boots..... This reminds me of our last bike
camping trip when we stopped at yard sales to get dry and came back with 135
pounds on our bikes (not counting ourselves).
I can't imagine biking only for exercise, not to get somewhere.
Food still tastes odd, or maybe it is just that tortillas don't go with
Chinese broccoli and orange juice.
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