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J W medicine forum beginner
Joined: 10 May 2006
Posts: 22
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Posted: Thu May 18, 2006 9:06 pm Post subject:
CT/PET scan results
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I want to thank you all for your kind thoughts and prayers. I got the
results from the CT/PET scan today. They were not as bad as I'd feared
but the news was not good.
They say there is mild hypermetabolic activity in the interiormost
aspect of the pelvis (I take that to mean peritonial cavity) and also
same within range of the rectom area, and some diffuse hypermetabolic
activity in the sigmiod colon which is the opposite side from where the
original tumor was found.
So to put it in laymen's terms, sounds like I'm plum eat up with it. I
was initially told I'd be on FOLFOX7 for 6 months but today the doctor
said she was adding avastin to the regiment and adding 6 more months of
chemo for a total of 10 months which I don't know if I can bear as weak
as this stuff makes me.
She says no hope for cure or remission but with luck may be able to keep
me alive for 3-5 years of 6 months on and 6 months off chemo. She'll
prolly make enough off me to pay for kid's college.
I'm not sure if I want to commit to such a long stint of chemo or not
as sick as this stuff makes me or even if I could physically endure it.,
Especially if the outcome is eventual death so I have to think on this
hard. Although it sounds better han the 6 months to live without chemo
or 18-24 with chemo that they said in the begining, it still is bleak.
Maybe I'd be better off just forgetting it and enjoying whatever time
the lord gives me rather than being forever sick with this chemo mess, I
don't know I have to think hard on this. |
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Bob Allison medicine forum beginner
Joined: 13 Aug 2005
Posts: 9
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Posted: Thu May 18, 2006 9:57 pm Post subject:
Re: CT/PET scan results
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In article <12369-446CE1CE-1283@storefull-3253.bay.webtv.net>,
jonboy42@webtv.net (J W) wrote:
| Quote: | Maybe I'd be better off just forgetting it and enjoying whatever time
the lord gives me rather than being forever sick with this chemo mess, I
don't know I have to think hard on this.> Hot Club of Cowtown
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There is something to be said for quality over quantity. I empathize with
you. My feelings are parallel to yours. I don't want to endure chemo
again. It is NASTY stuff
--
Make it idiot proof and someone will make a better idiot.
Bob
in Carmel, CA |
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Mike Radcliffe medicine forum beginner
Joined: 23 May 2005
Posts: 33
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Posted: Fri May 19, 2006 5:07 am Post subject:
Re: CT/PET scan results
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| Quote: | Maybe I'd be better off just forgetting it and enjoying whatever time
the lord gives me rather than being forever sick with this chemo mess, I
don't know I have to think hard on this.> Hot Club of Cowtown
There is something to be said for quality over quantity. I empathize with
you. My feelings are parallel to yours. I don't want to endure chemo
again. It is NASTY stuff
--
Make it idiot proof and someone will make a better idiot.
Bob
in Carmel, CA
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Chemo is only any good if it does what you hope it will and the side effects
are tolerable. Each person has to make up their own mind about what
tolerable means.
If living longer means never feeling well and spending most of your time
getting over the last chemo and dreading the next you would have to question
the point of it.
MIKE |
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Steph medicine forum Guru
Joined: 03 May 2005
Posts: 504
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Posted: Fri May 19, 2006 6:30 am Post subject:
Re: CT/PET scan results
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"J W" <jonboy42@webtv.net> wrote in message
news:12369-446CE1CE-1283@storefull-3253.bay.webtv.net...
| Quote: | I want to thank you all for your kind thoughts and prayers. I got the
results from the CT/PET scan today. They were not as bad as I'd feared
but the news was not good.
They say there is mild hypermetabolic activity in the interiormost
aspect of the pelvis (I take that to mean peritonial cavity) and also
same within range of the rectom area, and some diffuse hypermetabolic
activity in the sigmiod colon which is the opposite side from where the
original tumor was found.
So to put it in laymen's terms, sounds like I'm plum eat up with it. I
was initially told I'd be on FOLFOX7 for 6 months but today the doctor
said she was adding avastin to the regiment and adding 6 more months of
chemo for a total of 10 months which I don't know if I can bear as weak
as this stuff makes me.
She says no hope for cure or remission but with luck may be able to keep
me alive for 3-5 years of 6 months on and 6 months off chemo.
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I'm not sure where she got those figures from, but I would ask her before
making any decisions.
| Quote: | She'll
prolly make enough off me to pay for kid's college.
I'm not sure if I want to commit to such a long stint of chemo or not
as sick as this stuff makes me or even if I could physically endure it.,
Especially if the outcome is eventual death so I have to think on this
hard. Although it sounds better han the 6 months to live without chemo
or 18-24 with chemo that they said in the begining, it still is bleak.
Maybe I'd be better off just forgetting it and enjoying whatever time
the lord gives me rather than being forever sick with this chemo mess, I
don't know I have to think hard on this.
|
If chemo will extend survival to 5 years as opposed to 1, it may be worth
the pain.
But I really don't know of any data to suggest anything like that
improvement. |
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alex medicine forum beginner
Joined: 03 Mar 2006
Posts: 23
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Posted: Fri May 19, 2006 8:29 pm Post subject:
Re: CT/PET scan results
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| Quote: |
She says no hope for cure or remission but with luck may be able to keep
me alive for 3-5 years of 6 months on and 6 months off chemo. She'll
prolly make enough off me to pay for kid's college.
I'm not sure if I want to commit to such a long stint of chemo or not
as sick as this stuff makes me or even if I could physically endure it.,
Especially if the outcome is eventual death so I have to think on this
hard. Although it sounds better han the 6 months to live without chemo
or 18-24 with chemo that they said in the begining, it still is bleak.
Maybe I'd be better off just forgetting it and enjoying whatever time
the lord gives me rather than being forever sick with this chemo mess, I
don't know I have to think hard on this.
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Your choice, I would like long and hard before I made a decision. Alex |
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J W medicine forum beginner
Joined: 10 May 2006
Posts: 22
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Posted: Sat May 20, 2006 3:54 pm Post subject:
Re: CT/PET scan results (STEPH) question
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It is my understanding that you are some sort of doctor so I would like
to ask you some specific questions regarding this CT/PET scan results
because after re reading them I am in disagreement with my onc's opinion
and really see no evidence other than a rising CEA of any new cancer
activity..
1. They said they saw "mild focal hypermetabolic activity in the
inferior most region of the pelvis within range of the rectum, this
therefore could be relativey easily correlated with direct visualization
and palpatation. It is most likely physiologic." meaning normal
naturally occuring). They say no mass is seen in the area. I have an
anal fissure clearly visible on the outsiide and unknown how far within
it goes that is due to problems of diahrea and constipation from chemo.
Could this tear and subsequent inflamation be what is lighting up?
2. they said some more mild diffuse hypermetabolic activity is seen in
the sigmoid colon, this correlates with numerous diverticula seen on
the CT portion of the scan. they see no evidence of abscess formation or
significant infiltration of the fat however on the CT portion of the
scan. I was told after surgery that there was diverticula issues, in
fact they were uncertain if My tumor was cancer or a diverticula that
had walled off and abscessed prior to surgery. Could the diverticula be
what's causing the pet to light up and not cancer?
3. They said there were some lymph nodes showing on the CT scan in the
middle mediastinal region but they were not hypermetabolic so I don't
know what to make of that but I would assume that since they were not
hypermetabolic, they would not be an issue at present.
4. they said there was some mildly hypermetabolic activity in the spine
but the CT scan images in these areas show degenerative changes and this
most likely is reactive, bone scan from 12/05 was unremarkable. I have
had issues with arthritis pain, discs and a tailbone break for some
time so I take it that these issues are causing the pet to light in
these areas and not cancer
I don't really see these as issues to cause alarm, in fact it sounds to
me like these are issues of inflamation and not cancer and I question if
they warrant adding avastin and an additional 6 months of chemo.Or am I
missing something here?
Statistics show that stage 4 colon w/ mets to peritonial area have
approx. 15-19 month life expectancy with chemo. 5 of those months have
already passed of having about 3-4 days every 2 weeks that I'm not ill
from chemo. Is it wise A. to add a drug that is known to cause bowel
perferations to a patient who has pretty clear presenting diverticula
issues which in themselves can cause infections and perferations without
the aid of avastin.
B. take 6 more months of a possible 15-19 for a total of 11 months sick
on chemo which most likely when it ends will leave me too weak to do
anything enjoyable with what time may be left.
My onc now says instead of the original 15-19 months stated in the
beginning that she now beleives what I have is slow growng and that it
can possibly be managed with 6 months on and 6 months off chemo and with
luck if I respond well to the drugs may buy me 3-5 years. I don't see
how she got that conclusion from this ct/pet scan. The only thing that I
see that indicates any cancer activity and that I can't explain is the
rising CEA (2.5 feb, 2.7 march, 4.3 april & 5.8 may). My rbc is within
range at 13, wbc is OK at 6.5, iron is back to within normal range,
kidney & liver functions numbers seem normal but am having pain in liver
area which so far is unexplained as nothng has shown up in numbers or
scans. I can only assume that the chemo is overworking an ex drinkers
probably weakened liver and I'm having a constant pain in the same area
of the original tumor and pain s about the same level as when 2 fist
sized tumor was there (ascending colon) but nothing is showing on the
scans.
I'm thinking that this CT.PET scan was not nearly as bad as onc led me
to think, even she started out the explanation of it by saying it was
inconclusive. I'm thinking maybe a sigmoidoscopy with maybe some
biopsies in the areas lighting up might be adviseable first to see what
we are dealing with before wasting a chemical in our arsenal that might
be useful down the road. What is your opinion? |
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Steph medicine forum Guru
Joined: 03 May 2005
Posts: 504
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Posted: Sat May 20, 2006 4:39 pm Post subject:
Re: CT/PET scan results (STEPH) question
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"J W" <jonboy42@webtv.net> wrote in message
news:24025-446F3BAF-1398@storefull-3258.bay.webtv.net...
| Quote: | It is my understanding that you are some sort of doctor so I would like
to ask you some specific questions regarding this CT/PET scan results
because after re reading them I am in disagreement with my onc's opinion
and really see no evidence other than a rising CEA of any new cancer
activity..
|
You really need to ask these questions of your onc.............
However, given your stage 4 presentation, recurrence is pretty well
inevitable. The slowly rising CEA is probably indicative of that. The PET/CT
is pretty meaningless in terms of what to do, but if it were me, I would not
take additional treatment unless and until I had some symptoms to treat.
But you need to speak to your onc. |
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J W medicine forum beginner
Joined: 10 May 2006
Posts: 22
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Posted: Sat May 20, 2006 6:38 pm Post subject:
Re: CT/PET scan results (STEPH) question
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Thank you,
Yes I have asked my Onc these same questions and am still awaiting her
reply. I basically wanted to bounce the findings off someone not
involved who had some working knowledge of these things to see if you
got the same impression from the CT/PET scan results as I was seeing.
She feels that it is slow growing somewhere in the peritonial cavity and
is just not large enough to light up yet. She said after seeing the
results of the CT/PET scan that I had just bought myself an additional 6
months of chemo with avastin added and wants me to look for a clinical
trial for when that ends so that we don't use up all the chemo drugs in
our arsenal.
I feel that the CT/PET scan showed nothing indicating cancer and the CT
scan alone done 2 months ago also showed nothing.
If I understand n correctly avastin is a monoclonal antibody designed to
cut off the formation of blood vessels to tumoors to assentially starve
them. How can that be of use if there is no tumor showing?
She says I should take the additional chemo now to avoid trouble later.
I was told when I signed o with her that we'd do 6 months of chemo with
luecovorin, oxyliplatin and 5FU with avasti to be added later when I was
healed enough and after 6 months we'd re evaluate.
Now I'm told that avastin is never given for less than 6 months so if
it's added we will be adding 6 mre months of chemo with possibly the
oxyliplatin being reduced or taken out. That's 10 straight months of
chemo, is that adviseable?
Group: sci.med.diseases.cancer Date: Sat, May 20, 2006, 4:39pm (EDT+4)
From: steph@vancouvers.island (Steph)
You really need to ask these questions of your onc.............
However, given your stage 4 presentation, recurrence is pretty well
inevitable. The slowly rising CEA is probably indicative of that. The
PET/CT is pretty meaningless in terms of what to do, but if it were me,
I would not take additional treatment unless and until I had some
symptoms to treat. But you need to speak to your onc. |
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J medicine forum Guru
Joined: 29 Apr 2005
Posts: 612
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Posted: Sun May 21, 2006 4:47 pm Post subject:
Re: CT/PET scan results (STEPH) question
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J W wrote:
| Quote: | If I understand n correctly avastin is a monoclonal antibody designed to
cut off the formation of blood vessels to tumoors to assentially starve
them. How can that be of use if there is no tumor showing?
She says I should take the additional chemo now to avoid trouble later.
I was told when I signed o with her that we'd do 6 months of chemo with
luecovorin, oxyliplatin and 5FU with avasti to be added later when I was
healed enough and after 6 months we'd re evaluate.
Now I'm told that avastin is never given for less than 6 months so if
it's added we will be adding 6 mre months of chemo with possibly the
oxyliplatin being reduced or taken out. That's 10 straight months of
chemo, is that adviseable?
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Yesterday, I posted Phase III clinical trial results indicating those
receivng that combination
"lived nearly two months longer, on average, compared to
those who received chemotherapy alone (12.5 months vs. 10.7 months)."
I don't see any gain, considering what those last few months are like, do
you?
J |
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alex medicine forum beginner
Joined: 03 Mar 2006
Posts: 23
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Posted: Sun May 21, 2006 7:55 pm Post subject:
Re: CT/PET scan results (STEPH) question
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"J> I don't see any gain, considering what those last few months are like,
do
| Quote: | you?
When enrolling in a clinical trial, there are benefits that go beyond your |
own personal care.
http://www.clinicaltrials.gov/ct/info/whatis;jsessionid=F938FC297F346D8547FB394573B31E29
States :
Clinical trials that are well-designed and well-executed are the best
approach for eligible participants to:
a.. Play an active role in their own health care.
b.. Gain access to new research treatments before they are widely
available.
c.. Obtain expert medical care at leading health care facilities during
the trial.
d.. Help others by contributing to medical research
I would equate being in a burning building, one exit is a certain painless
death, your exiting would not be of any benefit to mankind but your exit
would be as painless as possible.
Or Exit two, this exit could lead to a wide open field where you could live
your life out ( but the chances are very small). Or the exit could lead to
a long a painful death, but you could go to exit one at any time. Or you may
live extra days or weeks. Also by going to exit two you are helping our
people who need to exit the building. I personally would go for exit two. |
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