Re: NEED HELP ADVICE FAST LIVER FAILING

Went to see intervntional radiologist and rasiology onologist today.
Interventional said no to external hepatic drain from right porta
hepatic. he says the one stent on left bile drain seems to be
functioning and may possibly add another later via ERCP if I live. They
both say that there ia apparently a large cluster of cancerous swollen
lymph nodes surounding that main bile duct that empties into the
intestines and they are right up against the bottom of the liver so
surgicaly remving them or surgicaly bypassing them is not an option they
say. They say they cannot radiate them withoutkilling the main bile
duct/drain thing that dumps into the intestines. I can't ttake more
chemo cause liver is screwed up so I guess I'm just done for. They say
these nodes are popping out all over and I hve now several small spots
in right lung. CEA has gone from 215 seven weeks ago to over 400. Either
their truly is nothing to be done or these docs down here just don't
want to do anything..

J W wrote:

> Went to see intervntional radiologist and rasiology onologist today.
> Interventional said no to external hepatic drain from right porta
> hepatic. he says the one stent on left bile drain seems to be
> functioning and may possibly add another later via ERCP if I live. They
> both say that there ia apparently a large cluster of cancerous swollen
> lymph nodes surounding that main bile duct that empties into the
> intestines and they are right up against the bottom of the liver so
> surgicaly remving them or surgicaly bypassing them is not an option they
> say. They say they cannot radiate them without killing the main bile
> duct/drain thing that dumps into the intestines. I can't take more
> chemo cause liver is screwed up so I guess I'm just done for. They say
> these nodes are popping out all over and I have now several small spots
> in right lung. CEA has gone from 215 seven weeks ago to over 400. Either
> their truly is nothing to be done or these docs down here just don't
> want to do anything..

I'm terribly sorry, Jonboy.
Kind of knew this would happen - the other shoe is dropping.
Mucinous can be aggressive.
Whatever is done now would be palliative.

I've heard of people who went to ER's and that hospitals aren't allowed to
turn patients away.
If you wanted to get a 2nd opinion about the radiotherapy, from different
specialists.

But I don't know which hospitals, this might not apply to (or not in
Florida).
And it's my understanding that if it's not covered, heavy duty paperwork and
promises to pay are required at the ER and collection agencies are hired, if
the bills don't get paid.
You know Florida and your health care coverage.

On the one hand, you might be told the same as you've been told by your
specialists.
On the other hand, some "heroic" meaure might be tried regarding the lymph
node that may improve the situation or might worsen the situation or even
kill you faster.
I'm not suggesting that you do it; just reminding you of what I've heard
about ERs in the US.

You know your options and how things work in Florida.
I'm sorry I can't help out further.

Please keep in touch as you are able.
(don't forget that Friday is a holiday - some specialists might be gone for
long weekend, but I expect that most hospitals have at least one specialist,
of every type, on call, if not there, at the ready).
J

> options and how things work in Florida.

You are correct in stating that by law no ER can turn a patent away
regardless of ability to pay. (Admissions and hospital stays can be
a different story!)

2nd Opinions? We do not know what insurance JW has. HMO's are as
different as is their number. Then there are Fee for service plans.
And those covered by Medicaid. And those with Medicare both part A
and part B. And Medicare plus supplemental. And even more. Most
insurances will cover a SECOND opinion.

> (don't forget that Friday is a holiday - Not so in the US. We do not have Good Friday as a Hoiday, nor do we have Easter Monday. (Separation of Church and State??)
> J

turtletrot1 wrote:

> > options and how things work in Florida.
>
> You are correct in stating that by law no ER can turn a patent away
> regardless of ability to pay. (Admissions and hospital stays can be
> a different story!)
>
> 2nd Opinions? We do not know what insurance JW has. HMO's are as
> different as is their number. Then there are Fee for service plans.
> And those covered by Medicaid. And those with Medicare both part A
> and part B. And Medicare plus supplemental. And even more. Most
> insurances will cover a SECOND opinion.
>
> > (don't forget that Friday is a holiday -
>
> Not so in the US. We do not have Good Friday as a Hoiday, nor do we have Easter Monday. (Separation of Church and State??)

Frank mentioned it. He's in the US
http://en.wikipedia.org/wiki/Good_Friday
J

J W Wed, 4 Apr 2007 wrote:

> Went to see intervntional radiologist and rasiology onologist today.
> Interventional said no to external hepatic drain from right porta
> hepatic. he says the one stent on left bile drain seems to be
> functioning and may possibly add another later via ERCP if I live. They
> both say that there ia apparently a large cluster of cancerous swollen
> lymph nodes surounding that main bile duct that empties into the
> intestines and they are right up against the bottom of the liver so
> surgicaly remving them or surgicaly bypassing them is not an option they
> say. They say they cannot radiate them withoutkilling the main bile
> duct/drain thing that dumps into the intestines. I can't ttake more
> chemo cause liver is screwed up so I guess I'm just done for. They say
> these nodes are popping out all over and I hve now several small spots
> in right lung. CEA has gone from 215 seven weeks ago to over 400. Either
> their truly is nothing to be done or these docs down here just don't
> want to do anything..

I'm here thinking of you, Jon and watching for your updates, as you able.
J

As you know who have been following my thread for the past week or two
the colon cancer which was for 12 moths just a mysterious growing CEA
with no visible tumor has now taken of in my lymphatic system with a
vengence. My CEA is now over 400 and there are many many lymph nodes
involved. As you can see from the CAT scan report posted below and from
what I've seen on the CT scan disc, there are multiple nodes up into the
porta hepatis of the liver and in several other places along the common
bile dut that drains from the liver tothe small intestine. Almost looks
loike grape clusters coking off the common bile duct. I was able to get
one stent put in which as helped somewhat, the liver numbers and
biliruben have bee trending down but are stll high. Still jaundice, very
fatigued and in pain.

I've been asking since the day these lymph nodes popped up in my
retrocrural lyph chain bck in dec. of 06 if radiation would help and
everyone has so far said no. I asked again this last week even to the
interventioal radiolgist and he said no that their were too many things
such as small bowel and kidneys in the way hat mightbe damaged from a
hit of radiation.. He said that the common bile duct itself most likely
would be killed from the radiation which would without a doubt kill me.
And he said carcinomas or whatever this cancer is that's got into my
lymph nodes from the colon cancer do not respond to radiation.

I spoke with a radiology oncologist yesterday and he said that was
nonsense. He said he'd scan me and see if a computer plan cold be worked
up, if sohe said the radiation combined with erbitux may help. He said
if the kidney or small bowel took hits accidentally they would most
likely heal and said the common bile duct he thought as wel as the porta
hepatis part of the liver could withstand the radiation about 30 daily
doses. I'm all for anything hat may help butdo not want to make things
worse. Just wondering who is right, all the docs that said
radiationwould dono good or this one radiologist who says it will????

march 21st CT scan report:
Findings:* There is marked interval worsening in the patient's disease
burden.* Most notably, there is now bulky adenopathy at the root of
the mesentery extending up into the porta hepatis and posterior to the
pancreas.* There is also some adenopathy extending down the aortic
chain and into the right retrocrural area. This is all concerning for
metastic disease.
*
The bulky adenopathy in the porta hepatis appears to be compromising the
lymphatic drainage as there is now periportal edema, predominantly in
the left hepatic lobe.* I do not see evidence of actual metastasis to
the liver, however.
*
There also are at least two, punctate, subcentimeter nodules idenified
in the right lung base that were not clearly present previously.* This
may represent very early metastatic desease to the right lung base as
well.* There is stable diverticular desease to the sigmoid colon,
without diverticulitis.
*
***Impression:
*
1.* Marked interval worsening in the appearance of the abdomen and
pelvis with extensive adenopathy at the root of the mesentery, extending
to the retroperitoneum and up into the porta hepatis. *
2.* The adenopathy appears to be compromising the lymphatic drainage
from the liver as there is now periportal edema. *
3.* Punctate, subcentimeter nodules in the right lung base. These were
not present previously and are also concerning for possible early
metastatic disease.

"J W" <jonboy42@webtv.net> wrote in message
news:19137-46167CD5-65@storefull-3252.bay.webtv.net...
As you know who have been following my thread for the past week or two
the colon cancer which was for 12 moths just a mysterious growing CEA
with no visible tumor has now taken of in my lymphatic system with a
vengence. My CEA is now over 400 and there are many many lymph nodes
involved. As you can see from the CAT scan report posted below and from
what I've seen on the CT scan disc, there are multiple nodes up into the
porta hepatis of the liver and in several other places along the common
bile dut that drains from the liver tothe small intestine. Almost looks
loike grape clusters coking off the common bile duct. I was able to get
one stent put in which as helped somewhat, the liver numbers and
biliruben have bee trending down but are stll high. Still jaundice, very
fatigued and in pain.

I've been asking since the day these lymph nodes popped up in my
retrocrural lyph chain bck in dec. of 06 if radiation would help and
everyone has so far said no. I asked again this last week even to the
interventioal radiolgist and he said no that their were too many things
such as small bowel and kidneys in the way hat mightbe damaged from a
hit of radiation.. He said that the common bile duct itself most likely
would be killed from the radiation which would without a doubt kill me.
And he said carcinomas or whatever this cancer is that's got into my
lymph nodes from the colon cancer do not respond to radiation.

I spoke with a radiology oncologist yesterday and he said that was
nonsense. He said he'd scan me and see if a computer plan cold be worked
up, if sohe said the radiation combined with erbitux may help. He said
if the kidney or small bowel took hits accidentally they would most
likely heal and said the common bile duct he thought as wel as the porta
hepatis part of the liver could withstand the radiation about 30 daily
doses. I'm all for anything hat may help butdo not want to make things
worse. Just wondering who is right, all the docs that said
radiationwould dono good or this one radiologist who says it will????

++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++
Radiation has an excellent chance of working, as I've been saying for some
time...........

"Steph" <steph@vancouvers.island> wrote in message
news:ONxRh.36572$6m4.4586@pd7urf1no...

> ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++
> Radiation has an excellent chance of working, as I've been saying for some
> time...........
>
>

I disagree, as I have also said.

OTOH, in the total scheme of things, I'm not sure that Jon has that much to
lose. His other doctors apparently have nothing else to offer in the way of
palliation from his obstructive jaundice.

HMc

"Howard McCollister" <nospam@nospam.net> wrote in message
news:4616c12d$0$92398$bb4e3ad8@newscene.com...
>
> "Steph" <steph@vancouvers.island> wrote in message
> news:ONxRh.36572$6m4.4586@pd7urf1no...
>
>> ++++++++++++++++++++++++++++++++++++++++++++++++++ ++++++++++++++++++
>> Radiation has an excellent chance of working, as I've been saying for
>> some time...........
>>
>>
>
> I disagree, as I have also said.
>
> OTOH, in the total scheme of things, I'm not sure that Jon has that much
> to lose. His other doctors apparently have nothing else to offer in the
> way of palliation from his obstructive jaundice.
>
> HMc
>
>
>

But with respect, Howard, you are wrong.
As I said before, I treat several patients in exactly this situation each
year, and most of them benefit.

"Steph" <steph@vancouvers.island> wrote in message
news:tSDRh.37995$aG1.21874@pd7urf3no...
>
>>
>>
>>
>
> But with respect, Howard, you are wrong.
> As I said before, I treat several patients in exactly this situation each
> year, and most of them benefit.
>
>

Perhaps. I've been wrong before.

At this advanced stage, with rampantly metastatic adenocarcinoma in this
particular window containing those particular structures and given the time
course and prognosis, I sincerely doubt that radiation will provide
meaningful overall palliation beyond what has already been accomplished by
draining part of his biliary tract - his transaminases and bilirubin are
dropping, he says. I wouldn't hesitate to refer a patient in this situation
to a radiation oncologist if mechanical drainage was unsuccessful and there
was nothing else to try, but I'm not at all sure, certainly not as sure as
you, of the efficacy in Jon's situation. I have seen many patients in this
situation too.

HMc

"Howard McCollister" <nospam@nospam.net> wrote in message
news:46178d44$0$71076$bb4e3ad8@newscene.com...
>
> "Steph" <steph@vancouvers.island> wrote in message
> news:tSDRh.37995$aG1.21874@pd7urf3no...
>>
>>>
>>>
>>>
>>
>> But with respect, Howard, you are wrong.
>> As I said before, I treat several patients in exactly this situation each
>> year, and most of them benefit.
>>
>>
>
> Perhaps. I've been wrong before.
>
> At this advanced stage, with rampantly metastatic adenocarcinoma in this
> particular window containing those particular structures and given the
> time course and prognosis, I sincerely doubt that radiation will provide
> meaningful overall palliation beyond what has already been accomplished by
> draining part of his biliary tract - his transaminases and bilirubin are
> dropping, he says. I wouldn't hesitate to refer a patient in this
> situation to a radiation oncologist if mechanical drainage was
> unsuccessful and there was nothing else to try, but I'm not at all sure,
> certainly not as sure as you, of the efficacy in Jon's situation. I have
> seen many patients in this situation too.
>
> HMc
>
>
>

Although the suggestion of 30 treatments is ridiculous. 1 or 2 would achieve
what can be achieved, and with less morbidity

"Steph" <steph@vancouvers.island> wrote in message
news:nJPRh.41051$aG1.40079@pd7urf3no...
>
> "Howard McCollister" <nospam@nospam.net> wrote in message
> news:46178d44$0$71076$bb4e3ad8@newscene.com...
>>
>> "Steph" <steph@vancouvers.island> wrote in message
>> news:tSDRh.37995$aG1.21874@pd7urf3no...
>>>
>>>>
>>>>
>>>>
>>>
>>> But with respect, Howard, you are wrong.
>>> As I said before, I treat several patients in exactly this situation
>>> each year, and most of them benefit.
>>>
>>>
>>
>> Perhaps. I've been wrong before.
>>
>> At this advanced stage, with rampantly metastatic adenocarcinoma in this
>> particular window containing those particular structures and given the
>> time course and prognosis, I sincerely doubt that radiation will provide
>> meaningful overall palliation beyond what has already been accomplished
>> by draining part of his biliary tract - his transaminases and bilirubin
>> are dropping, he says. I wouldn't hesitate to refer a patient in this
>> situation to a radiation oncologist if mechanical drainage was
>> unsuccessful and there was nothing else to try, but I'm not at all sure,
>> certainly not as sure as you, of the efficacy in Jon's situation. I have
>> seen many patients in this situation too.
>>
>> HMc
>>
>>
>>
>
> Although the suggestion of 30 treatments is ridiculous. 1 or 2 would
> achieve what can be achieved, and with less morbidity
>


BTW, it's true that radiation is very ineffective for intrinsic bile duct
blockage due to bile duct cancer, but is very effective for extrinsic
blockage due to portal nodes

Maybe someoe can give me an idea of what kind of pain killer to ask for
as I'm in terrible pain. I'm allergic to asprin,keflex and penicylin.
Have mild to moderate COPD and now liver issues
My primary doc gave me 2mg dilloudid and 1mg ativan instead of morphine
as the morphine made me short of breath This combination helps me get
to sleep but I can only sleep a few hours and am up again in pain and it
gives me nightmares sometimes. My oncologist gave me 20mg extended
release (12 hour) oxycontin and 5mg oxycodone. The oxycontin 20mg was
very epensive and I cannot take it. The first time I took it I itched
all over and felt very uncomfortable. The second time last night I
itched all over again and was up most of the night with mild fever, bad
chills and I still can't warm up. It affected my vision, made me feel
very uncomfortable and only lasted as far as relieving the pain about
3-4 hours. The side effects lasted the full 12 hors and the chills still
bother me 24 hours later. I'm afraid to try the oxycodone. What can I
get that will help the pain and not make me feel like crap?

On Apr 7, 9:29 pm, jonbo...@webtv.net (J W) wrote:
> Maybe someoe can give me an idea of what kind of pain killer to ask for
> as I'm in terrible pain. I'm allergic to asprin,keflex and penicylin.
> Have mild to moderate COPD and now liver issues
> My primary doc gave me 2mg dilloudid and 1mg ativan instead of morphine
> as the morphine made me short of breath This combination helps me get
> to sleep but I can only sleep a few hours and am up again in pain and it
> gives me nightmares sometimes. My oncologist gave me 20mg extended
> release (12 hour) oxycontin and 5mg oxycodone. The oxycontin 20mg was
> very epensive and I cannot take it. The first time I took it I itched
> all over and felt very uncomfortable. The second time last night I
> itched all over again and was up most of the night with mild fever, bad
> chills and I still can't warm up. It affected my vision, made me feel
> very uncomfortable and only lasted as far as relieving the pain about
> 3-4 hours. The side effects lasted the full 12 hors and the chills still
> bother me 24 hours later. I'm afraid to try the oxycodone. What can I
> get that will help the pain and not make me feel like crap?

There a patch that lasts for 3 days, if you join a hospice they
will pay for all you pain medication and will be able to manage you
pain... Alex

"Alex" <usenetgirl@gmail.com> wrote in message
news:1176000563.256564.171860@y66g2000hsf.googlegr oups.com...
> On Apr 7, 9:29 pm, jonbo...@webtv.net (J W) wrote:
>> Maybe someoe can give me an idea of what kind of pain killer to ask for
>> as I'm in terrible pain. I'm allergic to asprin,keflex and penicylin.
>> Have mild to moderate COPD and now liver issues
>> My primary doc gave me 2mg dilloudid and 1mg ativan instead of morphine
>> as the morphine made me short of breath This combination helps me get
>> to sleep but I can only sleep a few hours and am up again in pain and it
>> gives me nightmares sometimes. My oncologist gave me 20mg extended
>> release (12 hour) oxycontin and 5mg oxycodone. The oxycontin 20mg was
>> very epensive and I cannot take it. The first time I took it I itched
>> all over and felt very uncomfortable. The second time last night I
>> itched all over again and was up most of the night with mild fever, bad
>> chills and I still can't warm up. It affected my vision, made me feel
>> very uncomfortable and only lasted as far as relieving the pain about
>> 3-4 hours. The side effects lasted the full 12 hors and the chills still
>> bother me 24 hours later. I'm afraid to try the oxycodone. What can I
>> get that will help the pain and not make me feel like crap?
>
> There a patch that lasts for 3 days, if you join a hospice they
> will pay for all you pain medication and will be able to manage you
> pain... Alex
>

Hospice nurses are generally very knowledgable about pain management in this
type of situation.

HMc

"J W" <jonboy42@webtv.net> wrote in message
news:24533-4618457A-304@storefull-3254.bay.webtv.net...
> Maybe someoe can give me an idea of what kind of pain killer to ask for
> as I'm in terrible pain. I'm allergic to asprin,keflex and penicylin.
> Have mild to moderate COPD and now liver issues
> My primary doc gave me 2mg dilloudid and 1mg ativan instead of morphine
> as the morphine made me short of breath This combination helps me get
> to sleep but I can only sleep a few hours and am up again in pain and it
> gives me nightmares sometimes. My oncologist gave me 20mg extended
> release (12 hour) oxycontin and 5mg oxycodone. The oxycontin 20mg was
> very epensive and I cannot take it. The first time I took it I itched
> all over and felt very uncomfortable. The second time last night I
> itched all over again and was up most of the night with mild fever, bad
> chills and I still can't warm up. It affected my vision, made me feel
> very uncomfortable and only lasted as far as relieving the pain about
> 3-4 hours. The side effects lasted the full 12 hors and the chills still
> bother me 24 hours later. I'm afraid to try the oxycodone. What can I
> get that will help the pain and not make me feel like crap?
>
>
>
>

Dilaudid is probably your best bet............it comes in extended release
as well as "instant"

Well apparently I can't take any kind of pain killers. It must have
something to do with the liver. Last Night I took two 2mg dilaudid and
one 1mg ativan and within 30-45 minutes I was piled under every blanket,
robe, comforter and afghan in the house and stayed there all night with
boone raking chills sweating profusely. Temp stayed at aound 102-103 and
I had gas terrible bad. I don't know what to do. If it's an infection
and they take out this stent I'll die fast. I didn't want to bring in
hospice yet because you have to abandone all treatments before they will
step in . Thetemp is still around 101, I think I'd better go to
hospital

On Apr 8, 7:42 pm, jonbo...@webtv.net (J W) wrote:
> yet because you have to abandone all treatments before they will
> step in . Thetemp is still around 101, I think I'd better go to
> hospital

jon i hope the hospital can sort out pain and chills for you.

wishing you well
isi

"J W" <jonboy42@webtv.net> wrote in message
news:1851-46191B65-413@storefull-3255.bay.webtv.net...
> Well apparently I can't take any kind of pain killers. It must have
> something to do with the liver. Last Night I took two 2mg dilaudid and
> one 1mg ativan and within 30-45 minutes I was piled under every blanket,
> robe, comforter and afghan in the house and stayed there all night with
> boone raking chills sweating profusely. Temp stayed at aound 102-103 and
> I had gas terrible bad. I don't know what to do. If it's an infection
> and they take out this stent I'll die fast. I didn't want to bring in
> hospice yet because you have to abandone all treatments before they will
> step in . Thetemp is still around 101, I think I'd better go to
> hospital
>
Go to the hospital they can straighten things out and get your pain under
control. There has been a very active GI virus going around with the
symptoms you spoke about.

Hospice will pay for the treatment you are getting now since they are
pallative treatments, if you find a clinical I believe they still have to
keep you enrolled. Feel better Alex
>
>

"alex" <alex@noemail.ctv> wrote in message
news:I9idnS6Mic4i6YTbnZ2dnUVZ_tijnZ2d@comcast.com. ..
>
> "J W" <jonboy42@webtv.net> wrote in message
> news:1851-46191B65-413@storefull-3255.bay.webtv.net...
>> Well apparently I can't take any kind of pain killers. It must have
>> something to do with the liver. Last Night I took two 2mg dilaudid and
>> one 1mg ativan and within 30-45 minutes I was piled under every blanket,
>> robe, comforter and afghan in the house and stayed there all night with
>> boone raking chills sweating profusely. Temp stayed at aound 102-103 and
>> I had gas terrible bad. I don't know what to do. If it's an infection
>> and they take out this stent I'll die fast. I didn't want to bring in
>> hospice yet because you have to abandone all treatments before they will
>> step in . Thetemp is still around 101, I think I'd better go to
>> hospital
>>
> Go to the hospital they can straighten things out and get your pain under
> control. There has been a very active GI virus going around with the
> symptoms you spoke about.
>
> Hospice will pay for the treatment you are getting now since they are
> pallative treatments, if you find a clinical I believe they still have to
> keep you enrolled. Feel better Alex

Typically, hospice does require that the patient agree to stop seeking
therapy for cure, but it doesn't preclude palliative treatment like
radiation for compression of the common bile duct.

HMc

Thank you all for your advice. I guess it's not the pan killers causing
this fever and chils but perhaps just triggering it. I spoke with my
regular doc tody and she told e to take alieve which keeps the fever and
chils at bay for about 7 hours. I don't know why I'm so suseptible to
the chills even at low fever. 99 degrees produces severe cold. 100-102
produces severe body rattling waves of chills. She is sending me for a
test tomorrow for the gall bladder I guess we'll see what that produces.
The Gall bladder apeared thick walled and collapsed when the did te mrcp
and sonogram yet they said when they did the ercp it seemedd to be
functioning. I think this stent is failing cause me urine is almost
completely brown and I seem to be getting a little yellower. Lord
Jessus I hope not, if they take out that stent I'll die. Funny thing
when I had the first bout of severe cills the pinky finger and ring
finger and that whole side of my left hand were numb next day. Now after
2nd bad bout same thing on right hand.

J W schreef:
> I think this stent is failing cause me urine is almost
> completely brown and I seem to be getting a little yellower. Lord
> Jessus I hope not, if they take out that stent I'll die. Funny thing
> when I had the first bout of severe cills the pinky finger and ring
> finger and that whole side of my left hand were numb next day. Now after
> 2nd bad bout same thing on right hand.
>
>
>
>
>
I think everybody that reads your posts would so much like to help you
and it's frustrating there is nothing we can do except be here and
listen. I really hope the oxycodone, together with the alieve works for
your pain. It must be very, very difficult, I can't imagine, to get
sicker and sicker so fast where just a little while ago you were in
reasonable health( under the circumstances). I'm hoping for a little
miracle and thinking of you.

Anne

"J W" <jonboy42@webtv.net> wrote in message
news:18796-4619B104-92@storefull-3256.bay.webtv.net...
> Thank you all for your advice. I guess it's not the pan killers causing
> this fever and chils but perhaps just triggering it. I spoke with my
> regular doc tody and she told e to take alieve which keeps the fever and
> chils at bay for about 7 hours. I don't know why I'm so suseptible to
> the chills even at low fever. 99 degrees produces severe cold. 100-102
> produces severe body rattling waves of chills. She is sending me for a
> test tomorrow for the gall bladder I guess we'll see what that produces.
> The Gall bladder apeared thick walled and collapsed when the did te mrcp
> and sonogram yet they said when they did the ercp it seemedd to be
> functioning. I think this stent is failing cause me urine is almost
> completely brown and I seem to be getting a little yellower. Lord
> Jessus I hope not, if they take out that stent I'll die. Funny thing
> when I had the first bout of severe cills the pinky finger and ring
> finger and that whole side of my left hand were numb next day. Now after
> 2nd bad bout same thing on right hand.
>
>
>
>

Fever and rigors (chills and shakes) suggests infection in the biliary
system, which is common in patients with partial blockage and or stents.
Sometimes it means the stent needs replacing; sometimes antibiotics can
help.
The dark urine suggests that the stent is not working very well

They had me go for a HIDA scan today to take a look at the gall bladder
but they didn't see it at all. The radioactive stuff they shot me with
was supposed to gradually leave the liver to show how it was
functioning. They had me on the scan for an hour and no change, they had
me come back in 3 hours to take a second look and still no change. They
said it was lighting up as bright the last picture as it did in the
first one so it sounds like my liver isn't working well at all. I cannot
take any painkillers as they trgger all sorts of bad symtoms and I'm in
a lot of pain. My doc said to try alieve to help keep the feverat bay.
the first time I took it,it worked for about 7 hours. Second time only
about 3 hours. Last night was the worst so far. I had every blanket,
comforter, afgan, you name it on me and the heat turned up to over 80.
Slept wth a wool cap on my head and my extra heavy terry hooded robe on
with the hood also over my head. Yet my temp. was around 104, I sweat so
much that everything on the bed and on me was soaking wet thi morning. I
didn't get a wink of sleep and all day today I coulldn't eat or drink
for this test. No fever so far but it's early yet. If it goes thathigh
again tonight I'm going to the ER. You are prolly right steph it's
prolly an innfection from the stent, they haven't done blood cultures to
check for infection yet. I had thought perhaps it was either that, some
kind of virus or a bad gall bladder which I still think it could be. the
first sonogram they did on me they couldn't find the gall bladder,
second one they finaly found it as did the MRCP. they said it was thick
walled, collapsed an full of sludge. I said then it's bad lets take it
out. They said liver being swollen prolly collapsed it and it would be
ok once the liver was resolved well the liver aint resolving, It's only
been a week and a half since they put in the stent and I'm worse. Can
they get blocked or cause infection that fast? I think they won't take
out the gall bladder cause the liver numbers are so screwed up they are
afraid I wouldn't survive the anesthesia.


Group: alt.support.cancer Date: Mon, Apr 9, 2007, 7:59am (EDT+4) From:
steph@vancouvers.island (Steph) wrote:

Fever and rigors (chills and shakes) suggests infection in the biliary
system, which is common in patients with partial blockage and or stents.
Sometimes it means the stent needs replacing; sometimes antibiotics can
help.
The dark urine suggests that the stent is not working very well

J W schreef:
> I cannot
> take any painkillers as they trgger all sorts of bad symtoms and I'm in
> a lot of pain.
Can't you get yourself admitted to hospital or a hospice to try to do
something about this pain and go home (with care) once that is better
under control?. Seems to me you're not good off at home when the pain
isn't under control, that must be hell. In hospital/hospice they can try
different medication to try to get you pain free. It's bad enough as it
is, but imo everything should be done to ease the pain you're having.
You were on a rather low dose of oxycontin ( 2x 20 mg it was??) I
really think more can and should be done about your pain. I don't think
the pain medication causes the fever, it's more likely the cancer is
causing it or an infection. Hope something can be done about it.

Anne

No, the insurance companies won't keep you in hospitals for any lenght
of time anymore and you have tive up all treatment plans or hospice
won't help you.
I'm scheduled to try radiation for these nodes that are blocking my
porta hepatic, aortic chain and main bile duct, plus start erbitux to
see if it will help reduce the nodes. Not sure want to give that up
just yet,
They tried the patches on me last hospital visit, they ad no effect at
all on the pain and made my skin very raw, onw eaised up a long red mark
that has now scabbed over so they are off the list. I have 20mg
oxycontine tha's supposed to last 12 hours and 5mg oxycofone which is a
fast release short lasting one. They both make me ill. I have 2mg
dillaudid which used to work but know just makes me a nervos wreck and
gives me nightmares. They tried injecting me with small doses of
morphine in hospital and it caused breathing probelms. Now with my liver
apparently not functioning even the low dose stuff is going seem stroger
and last longer bcause the liver isn't processing it right.

J W wrote:

> No, the insurance companies won't keep you in hospitals for any lenght
> of time anymore and you have tive up all treatment plans or hospice
> won't help you.
> I'm scheduled to try radiation for these nodes that are blocking my
> porta hepatic, aortic chain and main bile duct, plus start erbitux to
> see if it will help reduce the nodes. Not sure want to give that up
> just yet,
> They tried the patches on me last hospital visit, they ad no effect at
> all on the pain and made my skin very raw, onw eaised up a long red mark
> that has now scabbed over so they are off the list. I have 20mg
> oxycontine tha's supposed to last 12 hours and 5mg oxycofone which is a
> fast release short lasting one. They both make me ill. I have 2mg
> dillaudid which used to work but know just makes me a nervos wreck and
> gives me nightmares. They tried injecting me with small doses of
> morphine in hospital and it caused breathing probelms. Now with my liver
> apparently not functioning even the low dose stuff is going seem stroger
> and last longer bcause the liver isn't processing it right.

Good luck with the procedure, Jon.
J

Well PRAISE GOD I'm home again, the ERCP was much more involved from the
anesthesiologists point of veiw this time. My Blood pressure was very
low (80s over mid 40s) my heart ratee was out of whack from the chills
and rattles as well as lots of pain killers. My Hemoglobin was down to
around 8 from the infection. So the knockout doc sisn't want to risk the
the normal knockout protocol. They did the full monte in OR with
brething tube. The 1st ERCP two weeks ago took about 30 minutes. This
time it was over an hour and a half. They said the origial stent on the
left appeared to be working fine and was not clogged. They were able
however to break through with some odd looking curly stent with holes
all in it to the right side,

last time they could not get through to the right side. He said he
drained nearly a litre of bile out of that side. Going in he was
optomistic that he could buy me at least 6 months, that changed to 2
weeks by time he was done, but GLORY TO GOD that's two weeks I would not
have gotten if we didn't try. They ran blood cultures and apparently I
was sepsic or septic, I had blood poisoning of some kind gram negative
in the ecoli family due to the liver being infected. I"ve made it
through one day (knock wood) without fever or freeziing with rattles &
shakes that makes two days out of 7 without them. They got me on three
antibiotics If you believe in God plese pray for me. I keep holding out
that something will change. That the Good Lord will guide me to the
right path and help me to endure and overcome this monster, if not that
he will be kind enough to take me quick with minimal pain to heaven fo
eternity.. I give thanks for every new day he gives me, for enduring
with me that which I cannot endure alone without him and for fighting
victoriously with me against those forces I cannot face without him.

J W wrote:

> Well PRAISE GOD I'm home again, the ERCP was much more involved from the
> anesthesiologists point of veiw this time. My Blood pressure was very
> low (80s over mid 40s) my heart ratee was out of whack from the chills
> and rattles as well as lots of pain killers. My Hemoglobin was down to
> around 8 from the infection. So the knockout doc sisn't want to risk the
> the normal knockout protocol. They did the full monte in OR with
> brething tube. The 1st ERCP two weeks ago took about 30 minutes. This
> time it was over an hour and a half. They said the origial stent on the
> left appeared to be working fine and was not clogged. They were able
> however to break through with some odd looking curly stent with holes
> all in it to the right side,
>
> last time they could not get through to the right side. He said he
> drained nearly a litre of bile out of that side. Going in he was
> optomistic that he could buy me at least 6 months, that changed to 2
> weeks by time he was done, but GLORY TO GOD that's two weeks I would not
> have gotten if we didn't try. They ran blood cultures and apparently I
> was sepsic or septic, I had blood poisoning of some kind gram negative
> in the ecoli family due to the liver being infected. I"ve made it
> through one day (knock wood) without fever or freeziing with rattles &
> shakes that makes two days out of 7 without them. They got me on three
> antibiotics If you believe in God plese pray for me. I keep holding out
> that something will change. That the Good Lord will guide me to the
> right path and help me to endure and overcome this monster, if not that
> he will be kind enough to take me quick with minimal pain to heaven fo
> eternity.. I give thanks for every new day he gives me, for enduring
> with me that which I cannot endure alone without him and for fighting
> victoriously with me against those forces I cannot face without him.

Well, PTL, Jon, for the ERCP and breakthrough.
Hopefully you'll be feelng better soon with the antibiotics.
Take care and please keep in touch.
J

On Apr 15, 4:22 am, jonbo...@webtv.net (J W) wrote:
> Well PRAISE GOD I'm home again, the ERCP was much more involved from the
ago took about 30 minutes. ... quick with minimal pain to heaven fo
> eternity.. I give thanks for every new day he gives me, for enduring
> with me that which I cannot endure alone without him and for fighting
> victoriously with me against those forces I cannot face without him.



You are in my prayers jon,

God bless you and care for you,

isi

On Apr 15, 4:22 am, jonbo...@webtv.net (J W) wrote:....
>> eternity.. I give thanks for every new day he gives me, for enduring
> with me that which I cannot endure alone without him and for fighting
> victoriously with me against those forces I cannot face without him.

J W wrote:

> Well PRAISE GOD I'm home again, the ERCP was much more involved from the
> anesthesiologists point of veiw this time. My Blood pressure was very
> low (80s over mid 40s) my heart ratee was out of whack from the chills
> and rattles as well as lots of pain killers. My Hemoglobin was down to
> around 8 from the infection. So the knockout doc sisn't want to risk the
> the normal knockout protocol. They did the full monte in OR with
> brething tube. The 1st ERCP two weeks ago took about 30 minutes. This
> time it was over an hour and a half. They said the origial stent on the
> left appeared to be working fine and was not clogged. They were able
> however to break through with some odd looking curly stent with holes
> all in it to the right side,
>
> last time they could not get through to the right side. He said he
> drained nearly a litre of bile out of that side. Going in he was
> optomistic that he could buy me at least 6 months, that changed to 2
> weeks by time he was done, but GLORY TO GOD that's two weeks I would not
> have gotten if we didn't try. They ran blood cultures and apparently I
> was sepsic or septic, I had blood poisoning of some kind gram negative
> in the ecoli family due to the liver being infected. I"ve made it
> through one day (knock wood) without fever or freeziing with rattles &
> shakes that makes two days out of 7 without them. They got me on three
> antibiotics If you believe in God plese pray for me. I keep holding out
> that something will change. That the Good Lord will guide me to the
> right path and help me to endure and overcome this monster, if not that
> he will be kind enough to take me quick with minimal pain to heaven fo
> eternity.. I give thanks for every new day he gives me, for enduring
> with me that which I cannot endure alone without him and for fighting
> victoriously with me against those forces I cannot face without him.

How are you doing, Jon?
We haven't heard from you since Saturday.
J- thinking of you.