Cause and effect
Anth
she had no symptoms, and on other days they were full on?
My argument was cause and effect, if we could find out what is causing the
good days, then maybe we could give her more good days.
The nurse said she probably wasn't any better just feeling better.
Well since on a good day my mother isn't running to the toilet every 20
mins, (which stresses her out)
So why?
Anth
bookbabe
I empathize with your mom about the frequent bathroom trips. Even
though I don't have a tumour in my bowels anymore, my bowel movement
habits have been changed by two surgeries. As well, my pain meds can
make me constipated. I'm trying to find the balance in diet and in a
stool softener so that I am having a bowel movement every day or two,
but am not visiting the biffy 3-4 times per hour.
It ain't easy. I've sometimes gone 12 days without a bowel movement,
then had to deal with MPS (multiple poop syndrome, so named by the CR
ACOR cancer group) for a day. Diet seems to have nothing to do with
it, either.
As for good/bad days-- for myself, I don't see a cause and effect
connection. That's not entirely true- weather affects my mood. A sunny
day makes me more active and cheerful. That was true before I had
cancer. Being out of the hospital makes me feel better, too. I imagine
that's the same for your mam. A good night's sleep affects my mood,
too.
But mostly, sometimes I wake up and feel good- positive, strong, able
to deal with the cancer. Other times I wake up and want to stay in bed
all day, as if I were hiding from the cancer.
I'm glad your mam is having some good days, Anth. I imagine that you
have a lot to do with that.
Michele
J
> As well, my pain meds can
> make me constipated. I'm trying to find the balance in diet and in a
> stool softener so that I am having a bowel movement every day or two,
> but am not visiting the biffy 3-4 times per hour.
>
> It ain't easy. I've sometimes gone 12 days without a bowel movement,
> then had to deal with MPS (multiple poop syndrome, so named by the CR
> ACOR cancer group) for a day. Diet seems to have nothing to do with
> it, either.
A friend is currently "swearing" by fresh (not canned or other) pineapple, once
a day, after breakfast I thnk.
J
J
Hi Anth,
The pineapple idea (I posted to Michelle) probably wouldn't be good for your
mother if she's got the runs.
But a friend is trying ALPHA GALATOSIDASE is an enzyme derived from the fungus
Aspergillus niger mentioned here for gas bloating and pain
http://www.nutriteck.com/galactosidase.html
In Canada, it's available in a product called Beano.
Don't know if your mam is still having the pains, if her onc would say "ok" or
not to the idea?
The only possible danger (to healthy persons) mentioned is "allergy to molds".
J
Anth
Hi J
My mother isn't that bloated since she had the bowel stent put in, but she's
suffering horrible toilet episodes that range from once per hour to twice.
This is sapping her strength and morale. I'll look into the fresh pineapple
thing, but she doesn't seem to want to eat frequently.
She's also anti herbal, anti alternative anti anything that the medical
profession would not advise. Maybe she will change her mind.
So to put it in a blunt manner she's screwed, and I'm devastated that she's
not trying any alternative things that might improve her quality of life.
She's on med after med after med. It's easy to pop pills I guess.
I can't get through to her - tried and tried. That's a big problem.
Anth
"J" <Nigh...@example.com> wrote in message
news:3EA84B1C...@execulink.com...
J
> (Thanks for your all replies people - appreciated)
>
> My mother isn't that bloated since she had the bowel stent put in, but she's
> suffering horrible toilet episodes that range from once per hour to twice.
> This is sapping her strength and morale. I'll look into the fresh pineapple
> thing, but she doesn't seem to want to eat frequently.
Anth, the fresh pineapple might help a bit with those who are constipated.
What are the "horrible toilet episodes"? Diarrhea? If so, no pineapple, in
fact, if she doesn't want to eat, there's not much any of us can do about it.
> She's also anti herbal, anti alternative anti anything that the medical
> profession would not advise. Maybe she will change her mind.
> So to put it in a blunt manner she's screwed, and I'm devastated that she's
> not trying any alternative things that might improve her quality of life.
> She's on med after med after med. It's easy to pop pills I guess.
> I can't get through to her - tried and tried. That's a big problem.
http://www.globalideasbank.org/ndw/NDW-8.HTML
It's her life, Anth, her choices as to how she spends the rest of it.
Just be there for her, as best you can.
Sadly,
J
Anth
They didn't ask her if she wanted chemo or not.
See how the NHS makes decisions for patients?
I remember them saying I think we will try a bit of light palliative chemo.
She accepted it.
I would have said "Show me some evidence first.."
Also I have rights as her son to do what's best for her if she is confused
or lacking in judgement, and I have feelings also.
This is really going to destroy me when she dies.
Anth
"J" <Orang...@example.com> wrote in message
news:3EA8921A...@execulink.com...
bookbabe
>(Thanks for your all replies people - appreciated)
>
>Hi J
>My mother isn't that bloated since she had the bowel stent put in, but she's
>suffering horrible toilet episodes that range from once per hour to twice.
>This is sapping her strength and morale. I'll look into the fresh pineapple
>thing, but she doesn't seem to want to eat frequently.
>She's also anti herbal, anti alternative anti anything that the medical
>profession would not advise. Maybe she will change her mind.
>So to put it in a blunt manner she's screwed, and I'm devastated that she's
>not trying any alternative things that might improve her quality of life.
>She's on med after med after med. It's easy to pop pills I guess.
>I can't get through to her - tried and tried. That's a big problem.
>Anth
A few days ago my family found out that my mom not only has bile duct
cancer, but that there is cancer in her lungs, too. It's not possible
to find out if the lung cancer is a new primary, or metastasis from
the bile duct.
My mom has adamantly said that she doesn't want chemo or radiation,
though she is willing to see an oncologist and listen to her options.
My sister and I have told her that, no matter what, we will support
her choices 100%.
Anth, that is what you need to do, imo. Quit trying to sell your mom
on treatments and let her be responsible for her own choices. Then
support those choices.
It's your mom's body and your mom's life. No matter how hard it may
be, you'll both be better off if you support her, rather than trying
to "get through to her," particularly about alt-med treatments that
are probably bogus.
Michele
bookbabe
>J
>They didn't ask her if she wanted chemo or not.
>See how the NHS makes decisions for patients?
>I remember them saying I think we will try a bit of light palliative chemo.
>She accepted it.
>I would have said "Show me some evidence first.."
>Also I have rights as her son to do what's best for her if she is confused
>or lacking in judgement, and I have feelings also.
Refusing treatment isn't evidence of a lack of judgment, Anth. In
fact, a lot of doctors would say it's evidence of good judgment. And
while you have feelings, it's still your mom's body and her right to
make treatment decisions, as tough as that may be to face.
The sooner you accept that your mom is going to make her own
decisions, the better off the two of you will be. Please don't let her
die with you angry and resentful that she won't follow your advice.
>This is really going to destroy me when she dies.
I feel the same way about my mom. I don't know how I will bear losing
her. And my sister faces losing both me and my mom.
But one thing I know is that my mom is happy, knowing that my sister
and I support her choices.
Michel
bookbabe
For constipation? I'll give it a go (pun intended <g>).
Michele
Cat in the Hat
"bookbabe" <book...@bigfoot.com> wrote
> My mom has adamantly said that she doesn't want chemo or radiation,
> though she is willing to see an oncologist and listen to her options.
> My sister and I have told her that, no matter what, we will support
> her choices 100%.
>
> Anth, that is what you need to do, imo. Quit trying to sell your mom
> on treatments and let her be responsible for her own choices. Then
> support those choices.
awful than the disease in many ways. The quack clinic she went to had her
doing enemas twice daily, and she only had half a colon!
> It's your mom's body and your mom's life. No matter how hard it may
> be, you'll both be better off if you support her, rather than trying
> to "get through to her," particularly about alt-med treatments that
> are probably bogus.
a bunch of quackery. Alt meds are not medicine, they are an alternative to
medicine.
CAT
Susan
Lowkey
n...@chance.mate says...
in my thoughts and prayers ever since you let us know that your
beloved died. My wife found me sitting at the computer, weeping and
wanted to know what was wrong. When I explained that you had lost your
wife, we both had a good cry together.
In any event, I hope things are beginning to look up for you, that
your grieving is not too painful, and that you will grace us with your
humor and wisdom (and maybe even some PHS-GOLD) in the days the
follow.
Lowkey the lowly, Cat fancying Labrat.
J
Yes Michele, but a few notes here.
8 months ago she was swearing by prunes, then she discovered lactulose and thought
it was "god's gift".
Her current theory is that lactulose encourages "lazy bowel" and hence the episodes
of diarrhea.
so she's retraining her bowel, she says, with the fresh pineapple.
So it's a work in progress and perhaps your (solutions) will need individual
tweaking.
> I'll give it a go (pun intended <g>).
Do and let us know (I think <g>)
Hugs
J
Cat in the Hat
"Lowkey" <Low...@nospam4me.net> wrote
> Glad to see you have not abandoned us, my feline friend. I've had you
> in my thoughts and prayers ever since you let us know that your
> beloved died. My wife found me sitting at the computer, weeping and
> wanted to know what was wrong. When I explained that you had lost your
> wife, we both had a good cry together.
>
> In any event, I hope things are beginning to look up for you, that
> your grieving is not too painful, and that you will grace us with your
> humor and wisdom (and maybe even some PHS-GOLD) in the days the
> follow.
my arse to see/hear from these damned alt.med loonies. Where the heck is
Steph when we really need him? Both e-mail addresses I had for him were no
good....
CAT
Anth
efficiently but the bugs in the gut love.
They convert it into an acid which softens the stool.
Anth
"J" <Orang...@example.com> wrote in message
news:3EA9CA18...@execulink.com...
J
> My mam is on lactulose - it's a sugar which the body doesn't process
> efficiently but the bugs in the gut love.
> They convert it into an acid which softens the stool.
Gastrointestinal Complications (Management of)
Lactulose (Cholac, Cephulac)
Lactulose is a synthetic disaccharide that passes to the colon undigested. When
it is broken down in the colon, it produces lactic acid, formic acid, acetic
acid, and carbon dioxide. These products increase the osmotic pressure, thus
increasing the amount of water held in the stool, which softens the stool and
increases the frequency of passage.
Onset: 24 to 48 hours
Caution:
Excessive amounts may cause diarrhea with electrolyte losses.
Avoid giving with acute abdomen, fecal impaction, or obstruction.
Dosage: 15 to 30 cc each day (contains 10-20 g of lactulose). []
I don't know if they "weight-adjust" the dosage, do you, Anth?
Also looks like some chemo causes constipation and some causes diarrhea.
I guess that's part of what I meant by "tweaking".
Is your mam on 5-FU? If so, what's it supposed to do ? (constipate or diarrhea)
J
bookbabe
<snip>
>Also looks like some chemo causes constipation and some causes diarrhea.
>I guess that's part of what I meant by "tweaking".
>
>Is your mam on 5-FU? If so, what's it supposed to do ? (constipate or diarrhea)
5FU, Camptosar and Oxaliplatin all have diarrhea as side effects. 5FU
is considered the mildest of these drugs, given for colorectal cancer,
with the easiest side effects to manage. Most people have few side
effects, though there is a minority of people who have problems.
Camptosar is sometimes called Cramptosar, and with good reason. While
I was on it, I had pretty much non-stop diarrhea for 6 weeks. The
diarrhea can be very difficult to manage; when the drug was in
clinical trials, some people died because they couldn't get the
diarrhea under control- dehydration led to organ failure. Before
starting on the Camptosar (also called Irinotecan), I had to read a 3
page document about the seriousness of diarrhea.
Anth, if your mom is on Camptosar, you'll want to monitor her closely
for diarrhea.
Oxaliplatin sometimes causes diarrhea, too, though the main side
effect is neuropathy in the fingers and toes. It's usually temporary,
and goes away when treatment ends.
Michele
Anth
How long do you think the 5FU course will last?
I was thinking they would use it until her death.
Anth
"bookbabe" <book...@bigfoot.com> wrote in message
news:evmkavg60cp6b3ps8...@4ax.com...
Steph
"Cat in the Hat" <n...@chance.mate> wrote in message
news:BVkqa.42164$4P1.3...@newsread2.prod.itd.earthlink.net...
Sorry, CAT, I've been away, and was in too much of a hurry to post my
absence.
My email is spoofed for obvious reasons.
J knows an email address which works
Cat in the Hat
"Steph" <st...@vancouver.island> wrote
> Sorry, CAT, I've been away, and was in too much of a hurry to post my
> absence.
> My email is spoofed for obvious reasons.
> J knows an email address which works
I had what appeared to be 2 good addresses; they are quite old
apparently. Are you aware that my wife died April 16th? She awoke that day
covered in purple blotches that were caused by low blood pressure causing
the blood to pool under her skin. I knew that wouldn't last long and she
died 3 hours later. Strangely, her blue eyes turned green after she died.
CAT ;-(
J
> I had what appeared to be 2 good addresses; they are quite old
> apparently. Are you aware that my wife died April 16th? She awoke that day
> covered in purple blotches that were caused by low blood pressure causing
> the blood to pool under her skin. I knew that wouldn't last long and she
> died 3 hours later. Strangely, her blue eyes turned green after she died.
>
( ( ( CAT) ) )
I lost your e-mail, either e-mail me or Jerry.
J
Steph
"Cat in the Hat" <n...@chance.mate> wrote in message
I didn't know, CAT. I was in the Yorkshire Dales at the time, and far from
the internet. I'm sorry for your loss, but I know it's been very hard for
you both, and maybe it was a release.
bookbabe
>Thanks Bookbabe will do as always!
>How long do you think the 5FU course will last?
>I was thinking they would use it until her death.
The docs may stop treatment if your mom has trouble with side effects,
or if treatment interferes with her quality of life. They may also do
a CT scan in a couple of months and stop treatment if the chemo
doesn't seem to be working (ie, tumour is growing). Sometimes, in the
face of side effects/diminished quality of life, the docs will try
giving the patient a smaller dose, as well, before giving up on the
drug altogether.
If the 5FU doesn't work, the docs might ask if they can give your mom
Camptosar or Oxaliplatin. This is where I would be wary of continuing
treatment, particularly if the onc. wants to use Camptosar. It can be
a real challenge dealing with out of control diarrhea.
When I was in the hospital for the tumour embolization, my room-mate
was a woman in her 60's. She had been hospitalized for =5= months as
the doctors tried to deal with her diarrhea and the complications
arising from the diarrhea. She'd been on Camptosar.
Now, this is only one person, and there are definitely people who
manage to do okay while taking Camptosar. But if your mom does
eventually go on this chemo, you'll need to watch her very carefully.
Remember, no one can force your mom to take treatment. She can stop
any time, and if she feels like she's losing quality of life due to
chemo, it is perfectly okay for her to say, "no more."
Michele
Anth
I mean what's the point of having it if it doesn't do anything to extend
life?
I have a big black void where chemo is concerned because I have heard so
much against it in here.
I don't see why they should 'experiment' on her with chemo?
She could life years without it, could this cause the cancer to become more
aggressive?
Maybe Steph can help?
Anth
"bookbabe" <book...@bigfoot.com> wrote in message
news:eekmavkl73folkfqc...@4ax.com...
Steph
"Anth" <an...@anon.com> wrote in message
news:3eab563d$0$45170$65c6...@mercury.nildram.net...
> Michelle do you think the chemo is worth it?
> I mean what's the point of having it if it doesn't do anything to extend
> life?
There are other reasons why treatment may help - quality of life, for
instance.
> I have a big black void where chemo is concerned because I have heard so
> much against it in here.
> I don't see why they should 'experiment' on her with chemo?
I doubt anyone is suggesting "experimenting" unless your mum is thinking of
entering a clinical trial. Even then to be ethical, a trial has to be
thought unlikely to do harm.
> She could life years without it, could this cause the cancer to become
more
> aggressive?
You described your mum's illness Anth. Unfortunately she isn't going to live
years. The chemo is intended to make her feel better, and it may fail to do
that.
> Maybe Steph can help?
> Anth
>
I wish I could, Anth but you seem to be going over the same ground again and
again.....
bookbabe
>Michelle do you think the chemo is worth it?
I don't know. Only your mom can say for sure. It might extend her
life, but no one knows for sure. Right now I'm taking a break from
chemo because I don't think it's doing me any good, but each person is
different.
>I mean what's the point of having it if it doesn't do anything to extend
>life?
It might. It might not. The challenge is that no one knows for sure.
If only we had crystal balls <wry smile>.
>I have a big black void where chemo is concerned because I have heard so
>much against it in here.
Chemo has helped many people, but it can't help everyone.
>I don't see why they should 'experiment' on her with chemo?
The doctors aren't experimenting on her, Anth. They're giving her
treatment that they hope will do your mom some good. I know it can be
hard, but it would be helpful if you can look at the actions of your
mom's doctors through a lens of good faith.
Even when the odds are slim, many patients and their doctors decide to
try treatment, hoping that they will be the people that beat the odds.
As I said, 5FU is a relatively mild chemo, and your mom may be fine
taking it. And if she doesn't like it, she can stop.
>She could life years without it, could this cause the cancer to become more
>aggressive?
I'm sorry, but I thought that the docs said your mom had a short time
to live. Have they changed the prognosis? Is your mom's cancer
confined to her colon?
Michele
Cat in the Hat
> I mean what's the point of having it if it doesn't do anything to extend
> life?
> I have a big black void where chemo is concerned because I have heard so
> much against it in here.
> I don't see why they should 'experiment' on her with chemo?
> She could life years without it, could this cause the cancer to become
more
> aggressive?
> Maybe Steph can help?
> Anth
her a better life, though not necessarily a longer life. IN the end, my wife
was glad she did chemo even though no one could prove it helped her. She
felt it probably had helped some and may have given her a few extra months
in a best case scenario. Most of what you've heard against it in this forum
is from doctor-haters and conspiracy loonies, not to mention urineoholics!!!
:-)
It's not really experimenting unless she is in a clinical trial, and
even then, the knowledge gained by learning from her experience means
something to some people, like my wife for example. She was glad to take
oxaliplatin, even though it nearly killed her. She was glad the oncs learned
it could cause such a severe reaction.
Finally, cancer does not need any help in being aggressive; it has got
that all figured out. I doubt there is much anyone could do to make it
worse. What danger would cancer be if it was passive? It would be benign.
CAT