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Medical Forum / Diseases and Disorders / Cancer / March 2006

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cancer in the liver and/or liver failure

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J - 14 Feb 2006 09:13 GMT
The liver is a digestive organ necessary for life. Besides helping produce
bile for digestion, it produces clotting factors for the blood, essential
proteins, regulates cholesterol and detoxifies drugs and poisons. The
liver is very resilient, but when it develops cancer can fail quickly,
leading to rapid demise of the patient.T

The most common symptoms are from a massive tumor growing in the liver, or
even liver failure. A very early cancer will have no symptoms, since it is
too small to cause any. As it enlarges, common symptoms include:

1.Pain in the right upper abdominal area caused by stretching of the
liver's capsule, which is rich in nerves. The liver may then extend below
the right costal margin ("hepatomegaly") and be painful to probe.
2. Weight Loss and loss of appetite; the liver is a digestive organ.
3. Swelling of the abdomen (called "ascites" pronounced a-site-ees) from
the liver failing to produce the protein required to hold the blood's
fluid in the blood vessels, so it migrates out to fill the abdomen,
scrotum and limbs.
4. Cirrhosis signs like breast swelling in males (from the liver failing
to break down estrogens) and little spider shaped veins (angiomata) seen
on the skin. Another sign of liver failure is very red palms ("palmar
erythema").
5. Blood clotting problems leading to intestinal bleeding and bruises on
the skin. The liver normally uses vitamin K from the diet and intestinal
bacteria sources to synthesize the clotting factor ("prothrombin")
necessary for life.
6.Fatigue and eventually coma from buildup of ammonia in the body.
7. Jaundice and light stools, from blockage of the bile draining system.
Also looser and smellier stools may be seen, ("steatorrhea") indicating
poor breakdown of fats in the digestive tract. Jaundice normally produces
itching (pruritis) when it becomes marked. The first area notable for
jaundice, caused by the
liver's failure to clear bilirubin, is the whites of the eyes ("scleral
icterus").
8. Paraneoplastic syndromes means unusual symptoms caused by chemical
alterations in the body either from the liver failing or secretions from
the tumor cells themselves. These include elevated blood calcium, low
blood sugar, anemias, precocious puberty in children, intense flushing,
and other metabolic
disturbances. These syndromes may sometimes be alleviated with cancer
shrinkage.
9. Signs of Distant Spread include bone pain, neurological symptoms from
brain involvement, and intestinal blockage. These all indicate advanced
disease.
John Richards - 14 Feb 2006 18:23 GMT
> The liver is a digestive organ necessary for life. Besides helping produce
> bile for digestion, it produces clotting factors for the blood, essential
> proteins, regulates cholesterol and detoxifies drugs and poisons. The
> liver is very resilient, but when it develops cancer can fail quickly,
> leading to rapid demise of the patient.T

I assume the "rapid demise" happens when there is no medical intervention.
Is there any evidence that chemotherapy can: a) delay the rapid demise,
and b) will chemo allow the liver to regenerate to some extent?
I realize that there is no cure, but am wondering if chemo for
liver cancer has some positive effects.

Signature

John Richards

Steph - 14 Feb 2006 20:43 GMT
>> The liver is a digestive organ necessary for life. Besides helping
>> produce
[quoted text clipped - 8 lines]
> I realize that there is no cure, but am wondering if chemo for
> liver cancer has some positive effects.

It may palliate symptoms.
It does not have any significant effect on survival
J - 14 Feb 2006 20:58 GMT
> "John Richards" <jr70@blackhole.invalid> wrote in message
> > I assume the "rapid demise" happens when there is no medical intervention.
[quoted text clipped - 5 lines]
> It may palliate symptoms.
> It does not have any significant effect on survival

Thanks Steph , I was hoping you would reply to John .
and it does not regenerate the liver.

Breast cancer, mets to bone and liver with high levels of ammonia (currently
being treated with lactulose) and was in the hospital for five days last month
due to hepatic encephalopathy. Of course she has diarrhea as well.  "liver pain
has been brought under control with taxol, and the bone pain is kept in check by
pamidronate".

I guess I wonder about Gemzar and pain meds that constipate, or whether, with
your knowledge of ammonia levels and hepatic encephalopathy, whether it's kinder
for the patient, to engage hospice and let her slip in to coma....??
J
John Richards - 14 Feb 2006 23:05 GMT
>> "John Richards" <jr70@blackhole.invalid> wrote in message
>> > I assume the "rapid demise" happens when there is no medical intervention.
[quoted text clipped - 18 lines]
> your knowledge of ammonia levels and hepatic encephalopathy, whether it's kinder
> for the patient, to engage hospice and let her slip in to coma....??

Hospice may be next. She's had two chemo (taxol) treatments so far, and
we've tentatively decided to hold our judgment until the series of six infusions
(spaced 21 days apart) is complete. I figure she will either feel somewhat
better, or else somewhat worse. Either way, we'll let that be our guide
as to what to do next.

It's difficult to get solid information on the efficacy of chemo.
The anti-chemo websites make it sound like it's a conspiracy
between the AMA and the drug manufacturers. It's hard to
know what to believe.

Signature

John Richards

Steph - 15 Feb 2006 04:12 GMT
> It's difficult to get solid information on the efficacy of chemo.
> The anti-chemo websites make it sound like it's a conspiracy
> between the AMA and the drug manufacturers. It's hard to
> know what to believe.

It's given with the very best intentions, but the oncs sometimes allow hope
to trump facts too...........not only the patients are human.
The questions are:
1) Can it cure? In the circumstances you describe, no
2) Can it extend life? In the circumstances you describe, no.
3) Can it improve quality of life? Maybe, but maybe not.

There are no other reasons to take treatment of any kind
John Richards - 14 Feb 2006 23:32 GMT
>> I realize that there is no cure, but am wondering if chemo for
>> liver cancer has some positive effects.
>
> It may palliate symptoms.
> It does not have any significant effect on survival

Well, that's not what the chemo drug manufacturers would
have you believe.  ;-)

Right after we discovered the cancer recurrence (BC mets)
the onc told us the prognosis was 4-6 months without treatment,
and possibly up to 36 months with chemo treatments. Admittedly,
this was before the ammonia problem reared its ugly head.

Signature

John Richards

Steph - 15 Feb 2006 04:14 GMT
>>> I realize that there is no cure, but am wondering if chemo for
>>> liver cancer has some positive effects.
[quoted text clipped - 9 lines]
> and possibly up to 36 months with chemo treatments. Admittedly,
> this was before the ammonia problem reared its ugly head.

There is metastatic disease and metastatic disease.
Median survival for a patient with bone mets from BC is about 20-22 months.
But for visceral mets (liver, lungs) it is less than 12 months, with or
without chemo
John Richards - 15 Feb 2006 21:36 GMT
>> Right after we discovered the cancer recurrence (BC mets) the onc told us
>> the prognosis was 4-6 months without treatment,
[quoted text clipped - 5 lines]
> But for visceral mets (liver, lungs) it is less than 12 months, with or
> without chemo

Can you refer me to any good online articles that discuss visceral mets prognosis?
I need something in writing to a) make plans for the future (i.e. have the wife
apply for disability retirement immediately), and b) give our onc a chance to
amend his prognosis.

Signature

John Richards

Steph - 15 Feb 2006 22:24 GMT
>>> Right after we discovered the cancer recurrence (BC mets) the onc told
>>> us the prognosis was 4-6 months without treatment,
[quoted text clipped - 14 lines]
> to
> amend his prognosis.

Your onc will have all the data, specific to her situation
alex - 15 Feb 2006 23:13 GMT
> Can you refer me to any good online articles that discuss visceral mets
> prognosis?
[quoted text clipped - 3 lines]
> to
> amend his prognosis.

John,
The trouble with breast cancer is that the treatment is continually changing
the median life expectancy is always changing.Also many oncologists have a
hard time admitting defeat ( which is good in one way since they are hopeful
that treatment will work).
http://www.hospicepatients.org/karnofsky.html The cancer records I have
reviewed the oncologist always mentions the patient's performance level.
Usually the hospice referrals are given when the patients are at 30 or
lower, but I know for fact the hospice  would like to get the referrals
sooner.  Many patients when they go to the oncologist don't disclose the
quality ( or lack of quality of life) they are having so often the
oncologists assess them at a higher scale then they truly are.

I would also speak frankly to the oncologist, that the disability money
would make the quality of your wife's life much better. It is a benefit your
wife worked hard for it would be a shame if she could not enjoy any of the
fruits of her labor.

Last, if you think you are not getting a straight answer from your
oncologist, ask for a palliative care consult. They maybe able to assist
with your issues. They will speak to you and your wife honestly. If your
hospital doesn't have a palliative care team, the hospice will come and
perform an evaluation.

Last, I would make sure that your wife signs a health care proxy and give
you durable power of attorney so you can assist her with health and legal
matters.

Best of Luck,
Alex
J - 17 Feb 2006 11:23 GMT
> > "John Richards" <jr70@blackhole.invalid> wrote in message
> >> Right after we discovered the cancer recurrence (BC mets) the onc told us
[quoted text clipped - 12 lines]
> apply for disability retirement immediately), and b) give our onc a chance to
> amend his prognosis.

Hello John,
Let's see ; where are we with the issues?
Mike said if it ain't broke, don't fix it. re: medications
Alex implied that your wife's symptoms might be worse than she is saying.
"Many patients when they go to the oncologist don't disclose the quality ( or lack of
quality of life) they are having so often the oncologists assess them at a higher scale
then they truly are."
That often seems to be true here as well.
Seems to me that there's a conundrum. Should you, in the future,need to palliate her pain
more, and it's a constipating medication, that would negate the effect of the lactulose,
thereby making her encephalopathy worse?
Is there a need to talk to a pain specialist (if not for now, but for future purposes)? and
is she well enough?, if she entered hospice or prehospice (Bridge Program) to be evaluated
as to whether radiation therapy (now) would help a lot of her (possible) pain (later). So,
in theory, she would need less pain meds for the duration (given her bad response to
methadone and morphine).

Prehospice or Bridge program might be required anyway, because i think that she would have
to abandon the Taxol for hospice; we don't know about the lactulose (yet). I don't know if
same holds true for the pamidronate.

There's an aritcle here about prehospice or Bridge Program.
http://www.jco.org/cgi/content/full/19/7/2057
I'ts older and things may have changed or may vary, depending on your plans (home hospice
or in hospital care) and/or what's available in your area.

I think you're going to talk to someone about getting a more precise prognosis.
If not based on the cancer, perhaps based on liver failure?
If not the oncologist, perhaps her primary care physician?
(so you can apply for disability benefit for her).

You do not want surprises with the pain palliation nor with the lactulose.
Fig hasn't jumped in here, but we thought everything was well planned and all papers in
order, but there were delays getting pain medication adjustments. So if they tell you they
would continue the lactulose, if that is your desire, I would get it in writing before
signing on with one hospice or another.

I don't want to jinx things nor delay you, nor confuse things. (apologies if I've gotten
anything above wrong)
Perhaps you're seeking counsel from a palliative care specialist.
Let us know how it's going, as you are able.
Just letting you know that I've not forgotten about you and your wife.
J
Figgertoes - 17 Feb 2006 14:50 GMT
> You do not want surprises with the pain palliation nor with the
> lactulose. Fig hasn't jumped in here, but we thought everything was
> well planned and all papers in order, but there were delays getting
> pain medication adjustments. So if they tell you they would continue
> the lactulose, if that is your desire, I would get it in writing
> before signing on with one hospice or another.

Good Morning,

Our hospice problems were isolated, Socks' nurse did not follow through
over & over,  I would have changed nurses in a heartbeat, but Sock's aunt
wouldn't hear of it & she was his caregiver while I worked. From what
happened at the end of life (2+ months after entering hospice), I believe
Socks had had such heavy doses of painkillers over 4+ years, that he'd
built up a tolerance.  Nothing, even at higher doses than anyone in
Denver had ever seen, could make his pain tolerable the last week.  Maybe
the IV pic line would have worked, but we'll never know.  So he may have
been a tough customer in the pain control department. I'm losing
focus...worked most of night...

He was on Bridge program 1 day (just a paperwork thing), but, from what I
learned, if certain palliative treatments are wanted - like radiation &
chemo - the bridge program is probably your choice - for as long as
treatment is going on. But we had a limited number of visits on that.  
I'd get an answer re lactulose before signing up, like J said.  

BUT, it would have been possible for us to flip out of hospice should
anything occur that hospice wouldn't cover & receive remaining bridge
visits during that time.  Then flip back to hospice when that was over.
So no decision was final with no recourse.  Just knowing that meant a lot
to us, but we had no need to flip.

He went to a pain specialist before hospice with a good, but temporary,
result.

Bottom line - I think most people's hospice experiences are much better
than ours.  

Your plan may vary from ours, so ask any ?s you can think of.  And you
can always run their answers by us here & we might help you think of more
?s.

Constipation:
A big problem here due to pain meds.  He used 3 kinds of meds continually
for that plus a hospice belly cream.  One softened, one created urge,
can't remember what 3rd did.  One was Senna (sp) otc.  Another was a
stool softener otc.  3rd was a script.  It can be a big problem.  Our
toilets became anal retentive on regular basis.

Best,
Fig
John Richards - 17 Feb 2006 17:39 GMT
>> Can you refer me to any good online articles that discuss visceral mets prognosis?
>> I need something in writing to a) make plans for the future (i.e. have the wife
[quoted text clipped - 12 lines]
> more, and it's a constipating medication, that would negate the effect of the lactulose,
> thereby making her encephalopathy worse?

There is no doubt that my wife had much more pain before she began the Taxol
and Pamidronate treatments. At some point in the future, the chemo may no
longer provide adequate pain relief. I guess we will cross that bridge when we
get to it.

> Is there a need to talk to a pain specialist (if not for now, but for future purposes)? and
> is she well enough?, if she entered hospice or prehospice (Bridge Program) to be evaluated
> as to whether radiation therapy (now) would help a lot of her (possible) pain (later). So,
> in theory, she would need less pain meds for the duration (given her bad response to
> methadone and morphine).

I initially asked the onc about radiation thereapy, but he said the mets were too
wide-spread for that.

> Prehospice or Bridge program might be required anyway, because i think that she would have
> to abandon the Taxol for hospice; we don't know about the lactulose (yet). I don't know if
[quoted text clipped - 4 lines]
> I'ts older and things may have changed or may vary, depending on your plans (home hospice
> or in hospital care) and/or what's available in your area.

My wife is covered by the Kaiser Permanente HMO health plan. Besides
hospice, they have something similar to the Bridge program, which I think
they call Home Health Care. Since I am retired and have so far been able
to attend to my wife's needs, we haven't made use of the bridge program.
She is somewhat ambulatory, able to walk (shuffle) about 20 paces
before she has to stop and take a breather. She isn't old enough to
qualify for Medicare. Incidentally, are there resources where I can
get a loaner of a collapsible wheelchair, for those occasions where I
have to take her to her medical appointments? I'm sure there are
private equipment suppliers who do this for $$, but our financial means
are limited.

> Let us know how it's going, as you are able.
> Just letting you know that I've not forgotten about you and your wife.

Thanks. I deeply appreciate any help, as this cancer thing is all very new to me.

Signature

John Richards

alex - 17 Feb 2006 21:50 GMT
> My wife is covered by the Kaiser Permanente HMO health plan. Besides
> hospice, they have something similar to the Bridge program, which I think
[quoted text clipped - 7 lines]
> private equipment suppliers who do this for $$, but our financial means
> are limited.

Your wife being a member of an HMO is entitled to many services. A
wheelchair is a covered item in most if not all insurance plans.
You will need a physician's prescription and obtain it through a contracted
provider. The 1-800 number on the back of your wife's card will direct you
to customer service. They will assist you in finding a contracted provider
and the proper wheelchair which would be a light weight wheelchair. Also
when you call ask for an explanation of benefits, this document will spell
out what your wife in entitled to and what co pays if any you must pay.

I would also ask if your wife is eligible for case management services, if
she is ask that she be assigned a nurse. This nurse can make you life
easier. For example, with the wheelchair, she could order one and have it
deliver to your home. Some insurance companies and Kaiser is certainly one
of the best will allow you to use her benefit in different ways. For example
the policy may entitle your wife to 100 days ( that is usually the norm) of
skilled nursing care, if you don't use them in a calendar year you get
another 100 days. The manager may have the ability to use those dollars
towards home care, for example if she needed an ambulance or chair car she
would have the ability to make that possible. The case manager will also
know what other resources are in your service area.  This person would be
the one to arrange home care so, the better the relationship you build the
smoother you wife's care can be.  Most patients find this service a
wonderful feature since you can cut through all the red tape.  PS the case
manager can assist you and your wife in applying for the disability.
Unfortunately these services are usually available during normal business
hours.

Alex
J - 17 Feb 2006 23:48 GMT
> John wrote:> My wife is covered by the Kaiser Permanente HMO health plan.
> Besides
[quoted text clipped - 13 lines]
> smoother you wife's care can be.  Most patients find this service a
> wonderful feature since you can cut through all the red tape.

Thank you alex, but clarifications needed.
Steph gave a prognosis (barring unforseen problems) of one year.
Does that mean that John has the responsiblity of caring for his wife, on his
own, for the other 265 days (the non 100 days skilled nursing care) ?

What is this skilled nursing care?  the same as hospice care, visit once a day,
help with bathing, adjusting medications, wound care etc or there all day to sit
with and care for the patient?
If so, he definitely needs a better prognostication, so that he can plan to have
this skilled nursing care for the last 3 months of her life.
J
John Richards - 18 Feb 2006 03:20 GMT
> Your wife being a member of an HMO is entitled to many services. A
> wheelchair is a covered item in most if not all insurance plans.
[snip]

Thanks, Alex. You have given me much food for thought.
Looks like I need to parse through the fine print of our
health plan.

Signature

John Richards

Figgertoes - 18 Feb 2006 05:38 GMT
>>> Can you refer me to any good online articles that discuss visceral
>>> mets prognosis? I need something in writing to a) make plans for the
[quoted text clipped - 37 lines]
> sure there are private equipment suppliers who do this for $$, but our
> financial means are limited.

I am on Kaiser & so was my husband.  Plans vary even within a state.  I'm
in Colorado.  Before hospice, the wheelchair cost us about $6/month.  It
was new & nice.  We had choices as to type.

Kaiser here had 3 plans we could have used.  One was hospice. One was  a
new plan that could be used for recovering from surgery or an injury.  
The patient needed to be housebound or nearly so. We could have used it
but decided on hospice.   Another was a bridge (pre-hospice) plan with a
certain number of available visits & unlimited phone consultations.  One
good thing about that is they stayed with you through resolution.  You
didn't just get names & numbers to call. All 3 programs used most of the
same providers, so if you switchhed, the caregivers. could remain the
same.

They could also provide respite care for you.  Volunteers could be with
your wife for several hours occasionally while you shop, run errands,
visit friends, etc.

hth,
Fig
John Richards - 18 Feb 2006 20:22 GMT
>> My wife is covered by the Kaiser Permanente HMO health plan. Besides
>> hospice, they have something similar to the Bridge program, which I
[quoted text clipped - 25 lines]
> your wife for several hours occasionally while you shop, run errands,
> visit friends, etc.

Thanks, Fig. If there is one thing I could use at this point is for
someone to sit with my wife while I do the household chores and
shopping. She exhibits poor judgment regarding what she is physically
able to do herself, and the minute my back is turned she has tried to
do something like getting into the Jacuzzi tub, and winds up sitting or
lying on the floor. With her 175 pounds of weight it takes quite a bit
of painful pushing and pulling to get her back on her feet.

Signature

John Richards

Figgertoes - 19 Feb 2006 00:37 GMT
>> They could also provide respite care for you.  Volunteers could be
>> with your wife for several hours occasionally while you shop, run
[quoted text clipped - 7 lines]
> or lying on the floor. With her 175 pounds of weight it takes quite a
> bit of painful pushing and pulling to get her back on her feet.

John,
That's one thing for your list when shopping for a plan.  Meanwhile, when
friends ask if there's anything they can do, mention that. Or, since
you're retired & could run errands during the day, maybe there's a senior
center offering daycare or drop-in activities, potlucks (check to see if
she would be safe), if she's able.  We have that here through our park
district.  It was a problem for my friend's husband as well. I'd go by
after work to visit & he'd scoot out to market.

Socks was completely self-sufficient until 2 months prior to death, even
drove.  His loss of mental competency was sudden & it took me awhile to
catch on to how severe it was.  One afternoon I was to be on a long
conference call during his med time.  I set a timer & put it at bedside
with meds & told him when timer goes off, take these meds. When I came
back moments later with a snack or something, he'd taken the meds. Then
he joined the conference call. It's amazing how much trouble they can get
themselves into in no time at all.  Running to the store is no longer
just a figure of speech!

I hope you find someone to sit with your wife.  You need time out in the
world occasionally to remain sane.

Fig
J - 19 Feb 2006 01:33 GMT
> "Thanks, Fig. If there is one thing I could use at this point is for
> someone to sit with my wife while I do the household chores and
[quoted text clipped - 3 lines]
> lying on the floor. With her 175 pounds of weight it takes quite a bit
> of painful pushing and pulling to get her back on her feet.

http://www.thefamilycaregiver.org/pdfs/HealthcrPrimer.pdf
Government In-Home Aide Services. Many states and counties offer homecare services to residents
who are aged or disabled. Some even offer services to family caregivers. Applications
for aid are evaluated by state social workers that rank a candidate’s needs according to a
number of objective criteria including whether the care recipient lives alone and what activities

he or she can perform. Care recipients who qualify are provided with home care aides
that can give personal (not medical) care, do light cleaning, change linens, prepare meals,
and transport or escort the patient to the doctor.
The aides are trained and licensed by the state. Fees are usually set on a sliding scale and can
range anywhere from $1 to $20/hour depending on the care recipient’s ability to pay. To find
out what services your state offers, call your state Department of Human Resources or state
Health Department. But be forewarned: usually these agencies are overwhelmed with applications
and the waiting list can be long.
J - 18 Feb 2006 11:28 GMT
> There is no doubt that my wife had much more pain before she began the Taxol
> and Pamidronate treatments. At some point in the future, the chemo may no
[quoted text clipped - 3 lines]
> I initially asked the onc about radiation thereapy, but he said the mets were too
> wide-spread for that.

Well, we've heard that before, John, and it was not necessarily so.
Go to an onc, they talk meds, go to a rad onc they talk RT. (each has their speciality, in the
US, is my understanding )
I cannot say the combo your wife is on, is not as good.
I know that "C" lived a long time with RT and bone mets and had quality of life, but she did not
have the liver and brain problems that your wife has.

However, I see that Tim's said that his wife had a not dissimilar situation in her last couple of
months, but not having refreshed my memory by reading her blog, I don't know what was causing the
brain problem (brain mets or calcium problems? or the ammonia problem), or if this is your wife's
last few months or not.  If not, the bone pain could get much worse.

Sorry to be a pest, but the time to take care of RT is now and not wait until there's a bone pain
crisis.

Steph's had those before because he's mentioned them.

See "Focus on pain" post for more about RT.

We're not there to see her bone scans, ask her what hurts or why she sits or sleeps a certain way
(ie do a pain assessment) or whether her replies can be relied on, due to the brain problems. In
that situation, perhaps a radiation oncologist would be guided mostly by judicious use of RT and
a bone scan.

So since you'll be the one coping with what might happen and when, I'll leave it at that.
Best,
J
Here's some portions (of that article) that jump out at me.
"The primary therapeutic aims of RT for bone metastases are pain relief as measured by reduced
pain intensity scores and elimination or reduction of analgesic usage, functional improvement
such as increased ambulation, reduction in the risk of fracture in weight bearing bones and in
some instances, control of paraneoplastic syndromes such as hypercalcemia.

The overall proportion of patients receiving pain relief rises to a high of approximately 90% by
3 months. More importantly, this pain relief is durable; 70% of patients experiencing pain relief
do not develop recurrent pain in the treated region. Sustained pain relief for a year is noted in
almost two-thirds of patients. Complete pain relief is more likely if the metastases arose from
breast or prostate cancer rather than from tumors of the lung.
In summary, RT is an effective and relatively safe approach to the management of pain in the
majority of patients with bone metastases. The treatment technique should be individualized for
each patient, and pain relief is likely to be achieved in most.

In our changing health care environment, there is occasionally a tendency to delay this option;
but it is important to consider RT early in the course of a patientís disease, as it has
decreased efficacy if delayed until the development of severe pain."
John Richards - 19 Feb 2006 04:25 GMT
>> I initially asked the onc about radiation thereapy, but he said the mets were too
>> wide-spread for that.
[quoted text clipped - 5 lines]
> I know that "C" lived a long time with RT and bone mets and had quality of life, but she did not
> have the liver and brain problems that your wife has.

At this point I am loath to have my wife switch away from something that is
working (Pamidronate), as far as bone pain is concerned. Is RT even feasible
when bone pain is present in multiple areas (legs, arms, spine, ribs, and skull)?

Signature

John Richards

J - 19 Feb 2006 11:41 GMT
> "J" <studras@anon.inv> wrote in message .
> >
[quoted text clipped - 10 lines]
> At this point I am loath to have my wife switch away from something that is
> working (Pamidronate)

Is it injectable or by mouth? Some patients can't swallow near the end of life...

> , as far as bone pain is concerned. Is RT even feasible
> when bone pain is present in multiple areas (legs, arms, spine, ribs, and skull)?

Feasible, yes. I can't remember what Steph said about whether such can be done all in one session -  I
think so. Ribs might be tricky depending on location; hence the "judicious use of RT"
I'm pretty sure that he tols us that RT can actually repair some situations.

Socks had RT to his ribs. (perhaps elsewhere). He also had RT very late, due to a tumour pressing on a
nerve handicapping one of his arms. I don't think he regretted that, but despite that he was in pain
(according to Fig's post) later, towards the end. And she seems to think. the meds might have "taken
him out", but by then he was gaunt, had lost a lot of weight and mostly sleeping. (Note: As I recall
he was also on a bone builder, but quit, because it just wasn't doing it anymore for him).

So you have a conundrum, of, as you mentioned, if things get worse with her brain (and liver), pulling
the plug on the lactuolse. Or if you think that's unlikely to happen, she could end up in a mega
mass-pain situation.  And not in enough control of herself to be able to do RT later without heavy
duty drugs to sedate her.
Thereby leaving you requiring more pain medications (later) and "taking her out" that way, which could
be a blessing if she's in pain and the liver/brain is uncontrollable.

However, if your insurance covers it and a radiation therapist thinks he can ameliorate the situation,
it could be a perfect solution, if they'd agree to do at least some of the sesssions, while she's
hospitalized, for a week or so, leaving you the time and freedom to start sorting out hospice,
prehospice, appiying for disability and catching up on things at home...

Let's see if Steph replies (because i'm not an expert about RT). He might be away for a few days
and'or I'm not sure why he hasn't been posting since Thursday.
J
PS I have no financial interest in recommending RT. I just want to make sure your wife does not suffer
needlessly.
Figgertoes - 19 Feb 2006 16:37 GMT
>> "J" <studras@anon.inv> wrote in message .

I think so. Ribs might be tricky
> depending on location; hence the "judicious use of RT" I'm pretty sure
> that he tols us that RT can actually repair some situations.
[quoted text clipped - 7 lines]
> was also on a bone builder, but quit, because it just wasn't doing it
> anymore for him).

He did have those radiations, some in ribs, later higher in neck vertabrea,
& took zometa (flowed like chemo) for bones.  At one point he was told the
bone mets were stronger than the unaffected bones, so RT or zometa or both
worked.  I don't know if the late-stage RT did any good.  He never regained
use of the left arm, & had bad pain there, but I don't know how bad it
could have gotten without RT.  RT might also have prevented cancer travel
to brain since RT site was very close to brain.  Lived 2 months past last
RT.

It was the pain &/or sedation meds that could have taken him out since
levels were so high.  If they did, we are thankful.

Fig
J - 19 Feb 2006 17:41 GMT
> J <studras@anon.inv> wrote :
>
[quoted text clipped - 15 lines]
> He did have those radiations, some in ribs, later higher in neck vertabrea,
> & took zometa (flowed like chemo) for bones.

Thanks for the Zometa. I couldn't remember the name.

> At one point he was told the
> bone mets were stronger than the unaffected bones, so RT or zometa or both
> worked.  I don't know if the late-stage RT did any good.  He never regained
> use of the left arm,

That's not how I remember. He'd stopped posting and was trying the speech
software and wasn't having much success with that and subsequently (I think)
posted that the RT helped quite a bit, because for a whle there, he was back in
fine form posting. (posted quite a bit, but like me, wasn't terribly good at
CAPS), so maybe it helped some, but didn't help some of the other. Below is two
of his combined posts.

From:   Socks the Whitehouse Cat -
Date:  Sun, Jun 26 2005 5:19 am

fwiw, at least the pinched nerve that the radiation was intended to treat
seems to be history. figgertoes tells me that the squeeze test shows that
I'm back at least to 50%, probably even better by now.  I can feel a
difference too.

Meanwhile, I am back to two handed typing.  Figgertoes says my grip is
definitely stronger, although still not normal.  The typing is a godsend,
since the voice activated software has trouble keeping up with my talking
speed even when it gets all the words right.  I stopped using the voice
activated stuff this morning.

> & had bad pain there, but I don't know how bad it
> could have gotten without RT.  RT might also have prevented cancer travel
[quoted text clipped - 3 lines]
> It was the pain &/or sedation meds that could have taken him out since
> levels were so high.  If they did, we are thankful.

thanks for sharing, Fig.
I've just been rereading his posts from April, May, June, July and think I want
to take a break for a bit.
Hugs
J
Figgertoes - 19 Feb 2006 21:23 GMT
>> J <studras@anon.inv> wrote :
>>
[quoted text clipped - 58 lines]
> Hugs
> J

J,
I'm not trying to contridict anything you say (just so you know).  I
haven't the heart to read his posts from that era yet but probably will
some day soon. That voice recognition software gave him fits.  Our
minister says it gets better all the time & he uses it for all his
sermons.  It 'learns' from mistakes.  I think Sock's speech may have been
a bit indistinct by the time he started using it & the drugs added to
that.  He'd get so frustrated -  we'd be the only people in the room & I
kept thinking he was talking to me, not seeing him with headset on!  It
was slow & made so many mistakes the results were nonsensical.

I plan to try using the software for something.  It has to be 'trained'
for each speaker.  You begin by reading a certain piece it already knows.

The pain in that arm remained intense & was relieved mostly with the
aromatherapy cream the hospice provided in early July.  At first we'd
rolled our eyes at the thought a cream could relieve what heavy meds
couldn't.  I was still applying that cream after he was moved to
inpatient hospice (aka pain control center).  Also used on back, rib
areas especially & up spinal column. 3X daily at least.  

I remember his using squeeze gizmo to strengthen arm (I recently found
that with my 5 lb dumbbells near his side of bed & put them away).  He
did get some transient function, but the pain there remained/returned &
the arm was hanging limply toward the end,  He needed help getting that
arm into sleeves. He couldn't hold things requiring 2 hands & couldn't
use left arm for bathing, etc. (but who knows how much worse it could
have become).  Final RT began 6/3 & ended 6/14 with 6/11 & 6/12 off.  The
hospital just sent the bill for copays last week & provided requested
detail yesterday, so it looks like I'm writing $300  check as I can't
find anywhere he paid them:-(

and i remember the capless emails he'd send to work, so dear they're
bringing tears. i'd forgotten about that.  He pushed to the end, that
sweet man did!  

btw, he was mentioned in Friday's Denver Post.  I attended political
meetings yesterday & am fairly active in this election cycle.  Can't fill
his shoes, but I'm sure he's appreciating the efforts I'm making.  Was
never my favorite thing...

Oh, the strong bone met reports were much earlier, not toward the end.  
He was told if anything ever fractured, it probably wouldn't be in the
mets.

Hugs,
Fig, who better get productive before sniffs turn into bawling
John Richards - 19 Feb 2006 21:27 GMT
>> "J" <studras@anon.inv> wrote in message .
>> >
[quoted text clipped - 12 lines]
>
> Is it injectable or by mouth? Some patients can't swallow near the end of life...

It's infused through an IV in an arm or hand vein. Takes about three hours,
but doesn't seem to have any noticeable side effects.

>> , as far as bone pain is concerned. Is RT even feasible
>> when bone pain is present in multiple areas (legs, arms, spine, ribs, and skull)?
[quoted text clipped - 15 lines]
> Thereby leaving you requiring more pain medications (later) and "taking her out" that way, which could
> be a blessing if she's in pain and the liver/brain is uncontrollable.

I have a hunch that the ammonia problem will do her in long before
mega pain becomes an issue. I'm already having trouble getting her
to swallow all the Lactulose doses, and the more irrational she gets
(from rising ammonia levels) the more trouble I have persuading her
to take the medicine.

> However, if your insurance covers it and a radiation therapist thinks he can ameliorate the situation,
> it could be a perfect solution, if they'd agree to do at least some of the sesssions, while she's
> hospitalized, for a week or so, leaving you the time and freedom to start sorting out hospice,
> prehospice, appiying for disability and catching up on things at home...

Our insurance (Kaiser Permanente) would cover RT, but until I'm
sure of its superiority over Pamidronate infusion, I'm not going to fight
the onc over it.


> Let's see if Steph replies (because i'm not an expert about RT). He might be away for a few days
> and'or I'm not sure why he hasn't been posting since Thursday.
> J
> PS I have no financial interest in recommending RT. I just want to make sure your wife does not suffer
> needlessly.

Understood.

Signature

John Richards

J - 19 Feb 2006 22:56 GMT
> I have a hunch that the ammonia problem will do her in long before
> mega pain becomes an issue. I'm already having trouble getting her
> to swallow all the Lactulose doses, and the more irrational she gets
> (from rising ammonia levels) the more trouble I have persuading her
> to take the medicine.

I guess the rest is moot and what follows might be as well, if you expect to not be able to dose her and you
and the oncologist think that she'll slow down and slip away without agitation or other disruptive
behaviour.
Some of the following might help you know what to watch for or expect... ( I hoonestly don't know)

Personality changes (eg, inappropriate behavior, altered mood, impaired judgment) are common early
manifestations that may antedate apparent change in consciousness. Sophisticated psychomotor tests can often
detect such abnormalities not suspected clinically. Usually, impaired consciousness occurs. Initially,
subtle sleep pattern changes or sluggish movement and speech may be present. Drowsiness, confusion, stupor,
and frank coma indicate increasingly advanced encephalopathy. Constructional apraxia, in which the patient
cannot reproduce simple designs (eg, a star), is a characteristic early sign. A typical musty sweet odor of
the breath, called fetor hepaticus, often occurs. A peculiar, characteristic flapping tremor, asterixis, is
elicited when the patient holds his arms outstretched with wrists dorsiflexed; as coma progresses, this sign
disappears and hyperreflexia and the Babinski response may occur. Agitation or mania may occur in fulminant
cases and in children but is otherwise uncommon. Seizures and localizing neurologic signs are also uncommon
and suggest another cause (eg, subdural hematoma).

. Coma associated with fulminant hepatitis is fatal in up to 80% of patients, despite intensive therapy;
patients with advanced chronic liver failure often die with portal-systemic encephalopathy.

Sedation deepens encephalopathy and should be avoided, even if the patient is agitated. Treating coma caused
by fulminant hepatitis with high-dose corticosteroids or with exchange transfusion and other complex
procedures designed to remove circulating toxins has not proved effective
<selections from http://www.merck.com/mrkshared/mmanual/section4/chapter38/38f.jsp>

Have you called to find out if there's a case manager, at the hospital, to help you out?
The sooner disability is applied for the better.
It's my understanding that when approved, the money is paid retroactively to the date of the
application.<double check this - unsure>
I don't know if it is paid to you, if your wife passes away, in the meantime.
If this were so, that needs to be a priority, so you can have some money to hire someone to be there with
you and watch your wife, while you take care of other things such as arranging hospice, shopping and tasks
around the home. If there's a case manageris available for you, perhaps the application can be fast-tracked,
but that still leaves you alone, in the meantime caring for her.
If there's a way to get a wheelchair (reread Alex's posts or maybe you made notes?), she would probably have
to have a restraints of some type, that attach at the back of the chair (or living room chair) to hold her
in, so she does not wander and fall and hurt herself, and so you can take care of things around the home.

I don't know the timeline, perhaps the oncologist can fill you in?
You really need help there, John.
You can't have her wandering while you're sleeping. Sedation seems to make it worse (see above).
Sounds like restraints for bed and sitting will be required.

Sounds like someone physically strong needs to be there, while you sleep and at least part of the day.
And I can't figure out how to do it, unless you can think of someone in your community, family,
ex-coworkers, who would be willing to do it and get paid later.
Is there anything you can sell to get some cash? 2nd car?  non-family heirloom jewelry, furs?
Loan on a life insurance policy, to be paid back after disability pays or her life insurance pays after her
death
<no need to answer  those questions - things to think about or ask about>

I suppose the only other option is to have her admitted to hospital, (unknown if it would be a psych ward or
hospice type ward). Ask the oncologist - explain the home situation.
I'll have to leave this with you, hoping you'll get some help there, as soon as possible.
J
Figgertoes - 20 Feb 2006 01:03 GMT
> The sooner disability is applied for the
> better. It's my understanding that when approved, the money is paid
> retroactively to the date of the application.<double check this -
> unsure> I don't know if it is paid to you, if your wife passes away,
> in the meantime.

http://www.ssa.gov/disability/

5 month waiting period from date disability is deemed to have occurred.  
But not everyone qualifies; you must earn credits by working in job covered
by SS with some of those credits earned in 10 yrs directly preceeding
disability.  Additional 24 months past 5 month waiting period to qualify
for medicare disability insurance.

So there could be substatial $$ out there waiting for John to apply for
them.  They also sometimes pay more if financial need is demonstrated.

We almost didn't apply for Socks since we didn't think he'd outlive the
waiting period.  But he did by far & received more than $1,800/mo in
benefits, enough to cover his personal expenses, bar tab, some travel, some
money of his own.  Sure lightened the load on me.

My friend did the same (I kept after her to apply).  The extra income made
her final year happier & application process was not the energy drain she
had dreaded.  It's much easier & quicker for terminally ill people than for
those with bad backs, etc.to substantiate disability.

Note, these benefits can be at least partially taxable, so take that into
account.

Fig
John Richards - 20 Feb 2006 04:14 GMT
>> The sooner disability is applied for the
>> better. It's my understanding that when approved, the money is paid
[quoted text clipped - 12 lines]
> So there could be substatial $$ out there waiting for John to apply for
> them.  They also sometimes pay more if financial need is demonstrated.

The rules are somewhat different in my wife's case since she is a federal
government employee. Also, she is still on the payroll since her vacation
time and paid sick leave have not quite run out. That will happen soon
though, so I'd better get busy with her disability retirement application.

Signature

John Richards

J - 20 Feb 2006 08:48 GMT
> http://www.ssa.gov/disability/
>
[quoted text clipped - 19 lines]
> Note, these benefits can be at least partially taxable, so take that into
> account.

Thanks Fig,
(I remembered, after I posted, that there's a wait period, but couldn't
remember how many months)
Very helpful and perhaps a heads up to others out there who've not yet applied
for.

I see that John's wife has income, but it gives him what he needs to know, as
well.

Hugs
J
Figgertoes - 20 Feb 2006 14:22 GMT
>> http://www.ssa.gov/disability/
>>
[quoted text clipped - 32 lines]
> Hugs
> J

It's so complex I have to look it up each time.  

Not for John's wife but for others, note the 'back to work' provision
where you can earn unlimited income for a number of months (need not be
consecutive) without sacrificing any benefits.  This is also OK for
patients who will never return to work but have opportunity to do a
little freelance work or similar.  Socks was expert witness, did some web
pages, wrote for publications, etc from time to time.  SS will come back
& ask typically nonsensical questions about this, but when I didn't know
all answers, they let it pass.  I didn't find this provision early on,
but if you know, it could ease decision to go on SS disability.  You
could even go back to old job on limited basis.  

Fig
alex - 20 Feb 2006 14:56 GMT
You may have missed it, John's wife is a Federal employee they do not pay
into the social security system therefore do not qualify for any  social
security benefits.

Also the social security benefit is for permanently disabled people and is
taxable according the SS web site: You  have to pay taxes on SSDI.
Paying taxes on your benefits
Some people who get Social Security have to pay taxes on their benefits.
About one-third of our current beneficiaries pay taxes on their benefits.
You will be affected only if you have substantial income in addition to your
Social Security benefits.

 a.. If you file a federal tax return as an "individual" and your income is
more than $25,000, you have to pay taxes.
 b.. If you file a joint return, you may have to pay taxes if you and your
spouse have a combined income that is more than $32,000.
 c.. If you are married and file a separate return, you will probably pay
taxes on your benefits
I could see how some people would divorce each other, to keep booking
straight. Unless you made under $10.400 Fig, It looks like it is taxable,  A
CPA or tax professional can really answer this question best.

> Not for John's wife but for others, note the 'back to work' provision
> where you can earn unlimited income for a number of months (need not be
[quoted text clipped - 6 lines]
> but if you know, it could ease decision to go on SS disability.  You
> could even go back to old job on limited basis.

According to the web site: http://www.socialsecurity.gov/pubs/10153.html#2
If you work while receiving disability payments
You should tell us if you take a job or become self-employed, no matter how
little you earn. If you are still disabled, you will be eligible for a trial
work period, and you can continue receiving benefits for up to nine months.
Also, tell us if you have any special work expenses because of your
disability (such as specialized equipment, a wheelchair or even some
prescription drugs) or if there is any change in the amount of the expenses.

Reality is that in cases of end stage cancer, they don't pursue. But  I
think the bigger message is this is really complex, and  an expert (case
manager, human resource professional, or lawyer) should assist in planning,
otherwise you could be in for an unpleasant surprise.
John Richards - 20 Feb 2006 23:09 GMT
> You may have missed it, John's wife is a Federal employee they do not pay
> into the social security system therefore do not qualify for any  social
> security benefits.

That was true under the old Civil Service Retirement System (CSRS),
under which I'm retired, but not true under the newer Federal Employees
Reirement System (FERS) which became effective for new employees
hired after 2/87, and they do pay into SS. My wife is under the newer
FERS system, which is a three-part system consisting of a small pension,
a 401(k), and SS benefits.
My CSRS pension is somewhat more generous than the newer FERS,
but the bad part is that I don't get any credit for the 15 years I
worked in private industry and paid into SS.

Signature

John Richards

John Richards - 20 Feb 2006 23:40 GMT
> I see that John's wife has income, but it gives him what he needs to know, as
> well.

Unfortunately, her salary income will dry up in a few weeks, so I need
to get cracking on applying for disability benefits, both with her
employer (federal agency) and the Social Security system.
The thing is, we had not realized until a few weeks ago that she
would probably never return to work, and no one (from either
the medical side or her employer side) counseled us on it.

I appreciate the good tips!

Signature

John Richards

Figgertoes - 21 Feb 2006 05:20 GMT
>> I see that John's wife has income, but it gives him what he needs to
>> know, as well.
[quoted text clipped - 7 lines]
>
> I appreciate the good tips!

I hope this works out to your benefit.  I am unclear whether part/all of
the 5-month waiting period could occur while she was drawing work
disability/vacation pay. Makes sense that it could, but you'll want to
run that by them. The rule reads '5 months from when disability is deemed
to have occurred' or similar.

It doesn't sound like she'll be doing any more work for pay, but
sometimes there are surprises.  My husband gave up part time college
teaching because the pain meds made that difficult.  Then a pharmacist
friend suggested vioxx (now pulled from market) & voila!  There were
interludes when he was quite productive & he was 'end stage' for over 4
years.

I filed self-employment tax form C & then ES for his intermittent work.  
Pretty simple.

His SS income ended up being taxed at 85%, so 15% was tax-free.  Woo woo!  
Depends on other income. There's a simple worksheet for this with the
long form. He never had taxes withheld from SS or IRA withdrawls, which
is why I'm not looking forward to filing return!  I'd suggest you at
least estimate your taxes for planning purposes.

Good luck, John, you'll be glad when it's done!
Fig
John Richards - 21 Feb 2006 06:48 GMT
> I hope this works out to your benefit.  I am unclear whether part/all of
> the 5-month waiting period could occur while she was drawing work
> disability/vacation pay. Makes sense that it could, but you'll want to
> run that by them. The rule reads '5 months from when disability is deemed
> to have occurred' or similar.

It turns out that the five month waiting period is not an issue for us
because my wife's employer kicks in extra disability retirement money
until such time as the SS benefits start up.
 
> It doesn't sound like she'll be doing any more work for pay, but
> sometimes there are surprises.  My husband gave up part time college
> teaching because the pain meds made that difficult.  Then a pharmacist
> friend suggested vioxx (now pulled from market) & voila!  There were
> interludes when he was quite productive & he was 'end stage' for over 4
> years.

Pain is not a problem for my wife at this point. Her disability is due
to extreme fatigue, muscular weakness, loss of mental acuity and
negligible short term memory. She can't even sign her name or print
legibly. I don't see any scenario where she could be gainfully
employed again.

Signature

John Richards

J - 21 Feb 2006 09:59 GMT
> Pain is not a problem for my wife at this point. Her disability is due
> to extreme fatigue, muscular weakness, loss of mental acuity and
> negligible short term memory. She can't even sign her name or print
> legibly. I don't see any scenario where she could be gainfully
> employed again.

Hello John,
I'm following along, on both newsgroups. (just so you know)
Onc appointment Thursday.
The seeing things is hallucinations (something affecting her brain), probably due to her liver
situation.
Or calcium metabolism (you could ask if bloodwork shows that) or general cancer metabolism.
Or psychiatric problems, it's hard to know really, but the main point is I doubt that it's her
eyes.
I suppose you could also ask if it's possible the cancer's now in her brain. (would require a scan
- Pet or MRI?)
J
John Richards - 21 Feb 2006 17:17 GMT
>> Pain is not a problem for my wife at this point. Her disability is due
>> to extreme fatigue, muscular weakness, loss of mental acuity and
[quoted text clipped - 7 lines]
> The seeing things is hallucinations (something affecting her brain), probably due to her liver
> situation.

Probably.

> Or calcium metabolism (you could ask if bloodwork shows that) or general cancer metabolism.

Her blood calcium was only slightly elevated, and that aspect (along with
bone weakness concerns) is being treated effectively by the pamidronate.

> Or psychiatric problems, it's hard to know really, but the main point is I doubt that it's her
> eyes.

I tend to agree with that assessment.

> I suppose you could also ask if it's possible the cancer's now in her brain. (would require a scan
> - Pet or MRI?)

When she had her hospital stay January 11-16, one of the tests they
ran was a brain MRI scan, which supposedly was clear.

Signature

John Richards

Mike Radcliffe - 22 Feb 2006 05:00 GMT
>>> Pain is not a problem for my wife at this point. Her disability is due
>>> to extreme fatigue, muscular weakness, loss of mental acuity and
>>> negligible short term memory.

John
   What you are describing is somebody who is in a very advanced
(terminal/preterminal phase) state of cancer. If this is the situation then
there is no solution other than to allow things to come to their natural
conclusion.
MIKE
John Richards - 22 Feb 2006 05:19 GMT
>>>> Pain is not a problem for my wife at this point. Her disability is due
>>>> to extreme fatigue, muscular weakness, loss of mental acuity and
[quoted text clipped - 5 lines]
> there is no solution other than to allow things to come to their natural
> conclusion.

Most, if not all of the symptoms I mentioned can be ascribed to
hepatic encephalopathy. I don't know whether the presence of
hepatic encephalopathy always means that the end is near.
I will grant you that I've seen some degradation in my wife's
condition this past week. I hope our meeting with the onc
on Thursday will provide some answers.

Signature

John Richards

J - 23 Feb 2006 08:17 GMT
> Most, if not all of the symptoms I mentioned can be ascribed to
> hepatic encephalopathy. I don't know whether the presence of
> hepatic encephalopathy always means that the end is near.
> I will grant you that I've seen some degradation in my wife's
> condition this past week. I hope our meeting with the onc
> on Thursday will provide some answers.

Thinking of you and your wife, John.
Good luck today.
I'm trying to not tie you up with posts, while you have so much to attend to.
Hopefully we'll have more time, once some arrangements have been made and in place.
J
J - 23 Feb 2006 08:14 GMT
> >>> Pain is not a problem for my wife at this point. Her disability is due
> >>> to extreme fatigue, muscular weakness, loss of mental acuity and
[quoted text clipped - 6 lines]
> conclusion.
> MIKE

I guess she knows she's in the driver's seat on that (for now).
He described her, on the breast cancer newsgroup, as "feeling so shitty, she
was contemplating pulling the plug" (I assume that means she was thinking of
stopping the lactulose, but hasn't so far).
J
J - 20 Feb 2006 09:08 GMT
> I have a hunch that the ammonia problem will do her in long before
> mega pain becomes an issue. I'm already having trouble getting her
> to swallow all the Lactulose doses, and the more irrational she gets
> (from rising ammonia levels) the more trouble I have persuading her
> to take the medicine.

Ammonia is produced from the breakdown of proteins, so maybe it's more common than I realized, in
gastro-related cancers, and since we've not usually privy to the last months' of a patient, perhaps that's
why I hadn't heard of it before.
J
John Richards - 20 Feb 2006 17:47 GMT
>> I have a hunch that the ammonia problem will do her in long before
>> mega pain becomes an issue. I'm already having trouble getting her
[quoted text clipped - 5 lines]
> gastro-related cancers, and since we've not usually privy to the last months' of a patient, perhaps that's
> why I hadn't heard of it before.

What is surprising is that high serum ammonia levels do not
necessarily correspond with the degree and severity of the
patient's encephalopathic symptoms. Apparently some people
have a more effective blood-brain barrier than others.

Signature

John Richards

J - 14 Feb 2006 21:00 GMT
> > The liver is a digestive organ necessary for life. Besides helping produce
> > bile for digestion, it produces clotting factors for the blood, essential
[quoted text clipped - 7 lines]
> I realize that there is no cure, but am wondering if chemo for
> liver cancer has some positive effects.

Hello John,
I'm sorry for what brings to the cancer newsgroups.
I have been following your posts on the breast cancer newsgroup.
Coincidentally, I was searching for information, about the liver, for other posters
here and saw the mention of ammonia and decided to post (part of) the article I
found.

Let's see if you and I and Steph can sort some things out for you.
I'm sorry. Mike R used to be here. He's our expert in hospice care, but for some
reason hasn't been here very often lately.
Hang in there, please.

I have another resource if you think you'd like to contact an expert hospice
worker, but a book for $20.00 would probably have to be bought first.
J
46erjoe - 17 Feb 2006 19:09 GMT
>The liver is a digestive organ necessary for life. Besides helping produce
>bile for digestion, it produces clotting factors for the blood, essential
>proteins, regulatesetc etc

I would be interested in knowing if this data would also apply to
colorectal cancer that has spread to the liver. My largest tumor is on
my liver and continues to grow. I'm trying to find out what I'm "in
for" so that I can be prepared and so that my family can be prepared.
John Richards - 18 Feb 2006 02:40 GMT
>>The liver is a digestive organ necessary for life. Besides helping produce
>>bile for digestion, it produces clotting factors for the blood, essential
[quoted text clipped - 4 lines]
> my liver and continues to grow. I'm trying to find out what I'm "in
> for" so that I can be prepared and so that my family can be prepared.

It's a crapshoot, as far as I can tell, which of the many liver functions
will initially be affected, and to what extent.

Signature

John Richards

J - 18 Feb 2006 11:29 GMT
> >The liver is a digestive organ necessary for life. Besides helping produce
> >bile for digestion, it produces clotting factors for the blood, essential
[quoted text clipped - 4 lines]
> my liver and continues to grow. I'm trying to find out what I'm "in
> for" so that I can be prepared and so that my family can be prepared.

Hello Joe,
People with cancer are prone to clots or bleeds. Looks like the liver's
involved in that. (chemo can be as well, according to something I read
yesterday).
Lowkey died suddenly of a brain bleed.
Clots can travel from one spot and block heart artery and cause heart attack(s)
or to the brain and cause strokes or aneurysms which bleed.

If none of those happen, it's likely that you will lose weight and muscle mass,
because the liver is a digestive organ. You will weaken and eat less and sleep
more. Being less ambulatory leaves you at risk for clots (back to that again)
or pneumonia (fluids collecting in your lungs and breathing troubles).  If none
of those happen (or something I haven't thought of), yes, liver failure and
jaundice is likely to be the end.

So the family has to know if you get a sudden blinding headache or dizziness or
vision problems, do they rush you in for testing and possible repair of an
aneuysm, or palliate the pain and let you slip away by a bleed.
If you have trouble breathing, will they listen to your chest and hear if
there's fluids? Will they ask for antibiotics and a needle to withdraw some of
the fluids or let you slip away.
If you have trouble breathing (but no sounds of fluids), could it be anxiety or
a clot or your heart?
I think these situations can be evaluated by someone like a qualified nurse or
someone in the family, who knows what to watch for.

The proteins can build up and cause abdominal bloating and/or  leg and feet
swelling.
Your blood pressure could possibly start to drop, due to not eating or like
Socks, you could be ravenous for certain foods.
I think the last 2 or 3 weeks might be obvious; It's the possible unexpecteds
that need to be discussed with family.  With the onc's help (or family doctor)
for palliative meds, family could possibly take care of you. "Cat" and his wife
were mostly alone the last few months. He did have panicky times, especially at
the beginning of end of life care but was in close contact with family doctor
by telephone, and as he gained confidence and knowledge, and an anti-anxiety
med, he settled down and she died peacefully, in his arms.

Re" the last week/weeks/days see crossingthecreek.com

J - may you still be with us a long time yet

Some of the symptoms of heart problems (see here
http://www.nlm.nih.gov/medlineplus/ency/article/000195.htm) can be similar to
those of the cancer, a clot, fluid in the lungs or the abdomen, liver failure (
indigestion or vomiting)
Figgertoes - 18 Feb 2006 19:40 GMT
>>The liver is a digestive organ necessary for life. Besides helping
>>produce bile for digestion, it produces clotting factors for the
[quoted text clipped - 4 lines]
> my liver and continues to grow. I'm trying to find out what I'm "in
> for" so that I can be prepared and so that my family can be prepared.

Probably no one knows for a specific case.  But before Socks got cancer,
I'd thought liver involvement meant curtains.  However, his NSCLC spread to
the liver 11/03 (Merry Christmas) & he died 9/05, not from liver failure.

That's all I know.

Are you retired yet?  In your new home?  Hope you're doing well, Joe.

Fig
J - 18 Feb 2006 20:34 GMT
> 46erjoe <46erjoe@whoknows.net> wrote in
>
[quoted text clipped - 10 lines]
> I'd thought liver involvement meant curtains.  However, his NSCLC spread to
> the liver 11/03 (Merry Christmas) & he died 9/05, not from liver failure.

Socks was on oxygen, perhaps his lung tumors stopped his breathing?
It's hard to know though unless there's an autopsy, because at the end, nearly
everyone dies (more or less) the same - changes in the body’s metabolism and
the progression of the disease process.
J
Figgertoes - 19 Feb 2006 01:54 GMT
>> 46erjoe <46erjoe@whoknows.net> wrote in
>>
[quoted text clipped - 18 lines]
> body’s metabolism and the progression of the disease process.
> J

Oxygen was for comfort, but maybe toward the end he relied on it.  I
don't know.  We forgot to take it out of the car when we went to his last
Broncos game about 10 days before death & he was fine without it. He got
a nosebleed at game if that means anything (& no, our seats are not in
nosebleed level <g>).

As he was exhibiting not even one of the signs of approaching death, we'd
just been told he was probably at least 3 days out (signs usually present
at least 3 days prior). I'd suspect the drugs took him out.  His doses,
though ineffective, were off the charts.  He wouldn't even sedate.  The
doc was right there, had just installed a pic (pik?) line & was about to
start flowing a new drug when he looked over & saw that Socks was gone.  
Socks had been on dual pumps previously (pain/sedation) & they ratcheted
the doses continually, sometimes every few minutes, never got on top of
pain or completely sedated.

Another possibility is blood calcium build-up from the bone mets. There
are a number of possibilities.  He was still wanting his ice cream that
afternoon.  Every time I fed, I told him to eat it only if he wanted to,
that he didn't need it. He was like a guppy, mouth opening in
anticipation when he knew I was there with ice cream.  He didn't speak
much.

Whatever it was, we were thankful & would never question the drugs.  He
was very ready & in incredible pain.

We ran no tests & there was no autopsy.  He had no outward signs of liver
failure.

There's something I've never mentioned.  In the wee hours after he was
sedated (attempted), he started talking.  He apparently thought himself
in a Texas prison/jail & had detailed plans for getting sprung.  He kept
saying, "This is important; write this down."  Then he started with
"Number 1, we must make the judge know we are sincere."  "Number 2..."  
He'd drift off often but always continued with the numbering scheme &
never forgot where he was in the scheme. He was convinced this was very
important & kept on us to pay attention. Never any hesitation; he had the
plan down pat. Our friend, Dan, & I had been sleeping on cots in the
room, but I'd gone down the hall & found a comfy bed, so Dan heard more
of this than I did. I've wondered every since what this could have been
about.  He never lived in Texas (I did) & had never been in jail.  
Symbolism as in pearly gates, final judgment?  The strange part to me was
the meticulous thought organization.  He hadn't put so many
words/thoughts together in several days & never did again.

Earlier, 10 days before death, he commented that the room was full of
people (just  him, me & kitty as far as I could see). I made a small
comment, hoping to hear more, but that's all he said.  Gave me a look
like he'd been caught being foolish.  

I've read the books about visits from guides &  deceased loved ones.  But
the prison story??  Anyone experienced similar?

Fig
46erjoe - 02 Mar 2006 23:19 GMT
We're all moved in (took my last week of vacation to do so) and I have
a few more days here. Wow! What an outpouring of love by my church
people! Unbelievable. I am so humbled.

On Monday we hop in the car and drive back to our home. We were very
lucky to find it ... a 4 year old ranch with everything we need on one
level. The bath even has a sit-down shower and there is a wheel chair
ramp from the garage to the kitchen. The family room opens through a
double wide glass door to the outside to a deck overlooking the
Lackawanna Valley. Little road noise. Lots of nature. God is good.

--Joe

>>>The liver is a digestive organ necessary for life. Besides helping
>>>produce bile for digestion, it produces clotting factors for the
[quoted text clipped - 14 lines]
>
>Fig
Figgertoes - 03 Mar 2006 07:32 GMT
> We're all moved in (took my last week of vacation to do so) and I have
> a few more days here. Wow! What an outpouring of love by my church
[quoted text clipped - 8 lines]
>
> --Joe

It's great to hear from you, Joe.  I've been thinking of you, wondering
where you were on your move.  Your home sounds ideal, made to order.  I bet
you were excited to find it with all those features already part of it.

I wish you well & hope you stay in touch.

Hugs,
Fig
J - 03 Mar 2006 22:19 GMT
> We're all moved in (took my last week of vacation to do so) and I have
> a few more days here. Wow! What an outpouring of love by my church
> people! Unbelievable. I am so humbled.

I can imagine (the outpouring of love) and I imagine they'll miss you very much.

As Stephen posted ""what we do for ourselves dies with us, what we do for others
lasts a
lifetime" - your contribution to them and now it's time for you...

> On Monday we hop in the car and drive back to our home. We were very
> lucky to find it ... a 4 year old ranch with everything we need on one
[quoted text clipped - 4 lines]
>
> --Joe

Sounds just right for you, Joe.
I do hope you'll keep us updated.
I'll be watching for your posts.
Best,
J
46erjoe - 04 Mar 2006 23:45 GMT
>> We're all moved in (took my last week of vacation to do so) and I have
>> a few more days here. Wow! What an outpouring of love by my church
[quoted text clipped - 20 lines]
>Best,
>J

I'm staying with Fox-Chase in Philly. A little longer drive, but I
want the continuity. I don't think I'm going back to Erbitux though. I
don't think it's worth it (for me anyhow). I'd rather die earlier with
a normal looking face, than a bit longer with a pizza-face!

This may be my last post for a while. It may take some time to get set
up with another internet carrier. See ya all later.

--Joe
 
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