From the archives 's 1st post and history----- LONG

[Guest guest]

Originally posted by AKA Altman23 on Jan. 5 2002 almost 2 years before

he was lost to this beast! As for some of his posts it was always 's

belief that anyone who wanted to could post even those who advocated

controversial treatments. However if it evolved into SPAM he and later his wife

Sindee

would delete it.

I wish some of you newer members had known he was so loved here and

willing to help ANYONE. Many's the time he would research the web for us

concerning some aspect of the disease. He and another old-timer a (who lost

her

Mom to Colon Cancer) were among the first to welcome me here in June 2003

when I like all of us was lost scared and searching for answers. If I sound

like I'm defending a " saint " that is because in my mind and the mind of us

" old-timers " and many of you who have taken the time to read his posts is

a

" saint " and deserves nothing but our thanks for creating a place where we can

come together and get the help and support we need to slay this beast. Just

my 2 cents.

Narice

Hello, and welcome to the Colon Cancer Support Group!

There doesn't seem to be a lot of " open membership " Colon Cancer BBs

out there...so I thought I'd add this one to the sparse list. I

think that its important to have at least a few such boards in

existence so patients/caregivers can " take a look " and see what the

board is all about without having to first " request membership. " If

you can't see it first, how would you know if you wanted to " join " or

not? Well, at least that's the way I feel and I assume there must be

many others who think the same. After I was first diagnosed, I

" lurked " for weeks before finally making a few posts on some other

public boards – had I not been able to do that, I doubt I would have

posted at all.

Actually there are a couple of additional reasons I decided to create

this board.

(1) There is a certain other " support " colon cancer BB I USED TO post

a lot on – and I say " used to " because it's been offline for several

weeks now. I assume it is not coming back (although I could be and

hope I am wrong), and I've been exchanging e-mails for awhile now

with some friends I met there. Much of what I've written in those e-

mails I would probably have posted had the board been available. I

can hardly remember what I've said to who and I suspect I've been

repeating myself to some of the same people and not saying things I

intended to others because I thought I'd already said them! IF the

other board does come back and this one has not generated much

interest, I MAY switch the status here to " restricted membership " to

provide a more private forum for " regulars " on that BB (assuming they

want that).

(2) I started another BB in Yahoo Clubs (

_http://clubs.yahoo.com/clubs/experimentalandunconventional_

(http://clubs.yahoo.com/clubs/experimentalandunconventional) ) before

really understanding the difference between a Club and a Group. I've

since learned that Groups are a lot better, and I wish I'd created

experimentalandunconventional as a Group! The purpose of

experimentalandunconventional was/is to keep up with new developments

in CC treatment (e.g. news articles, research results, the " technical

side " , etc.), and I didn't really intend it to be a " support " type

BB in the same sense as this one. But I must confess the line

between experimentalandunconventional and colon_cancer_support is

fuzzy. Yahoo says they will eventually turn all the Clubs into Groups…

until then I may use colon_cancer_support partly to do some of the

things I'd like to do in experimentalandunconventional but can't

(like post digital photos and make posts longer than 100 lines or

whatever the length restriction they have in Clubs is!). But

really, colon_cancer_support is intended as a SUPPORT group, open to

those with WHATEVER viewpoint: " conventional " treatment,

" alternative " treatment, or " complementary " treatment. I don't like

the politics dividing these groups – in fact I think it's ridiculous

- and I wish ALL to feel welcome here.

Well, that being said I'll tell you a little of my (cancer)

background.

I was diagnosed 3/23/01 with colon cancer, stage unknown, after

Colonoscopy (GI symptoms for about a year before diagnosis). The

next day they did a CT, determined the colon tumor was about 7 cm long

and saw multiple mets on both lobes of the liver. One of these mets

was in an easy to reach location on the surface of the liver but most

were deep inside and I was declared stage IV. I was 40 years old at

the time of diagnosis and have no history of CC in my family. I had

colon resection 3/27/01 for a single tumor located next to the

ileocecal valve (where the large and small intestines join) which was

causing an almost complete obstruction. During this surgery one " easy

to reach " surface liver met was also resected (called a " wedge

resection " ). While recovering from surgery, during the months of

April and May I was doing a lot of research on clinical trials and

that's when I got the idea to create my webpage

_http://ourworld.compuserve.com/homepages/suthercon/main.htm_

(http://ourworld.compuserve.com/homepages/suthercon/main.htm)

I started it mainly to keep track of what I had looked at because I

am somewhat disorganized by nature and have to have some method of

keeping it all straight. Based on this research (and with zero help

from my now ex-oncologist who claimed there were " no trials out there

for you " ), I had attempted to get into several clinical trials (C225

and Genentech's Anti-VEGF) but was ineligible for C225 (I am EGFR

negative) and the Phase II Genentech trial along with another trial I

was looking at stopped accrual shortly before I could get in,

probably because of the Camptosar death issue. In the meantime saw a

liver surgeon who did a " better " CT and determined that the liver

mets were all in the right lobe and some of what they previously

believed were mets were now reclassified as benign cysts and/or " flow

artifacts " . My status was suddenly changed from " inoperable,

terminal " to " operable, potentially curable " . Whew!

So I went for the liver right lobectomy (6/28/01), during which they

found two more previously unknown mets, 1cm and .5 cm " barely

attached " to the diaphragm. These were not seen on the preop scans

and while I had not done a PET scan, the surgeon and oncologist

insist it wouldn't have mattered because for the location and size of

the mets they would have been invisible to the very best scan anyway.

Actually, I didn't push very hard for a PET or MRI for fear they

WOULD find something like this and then they would refuse to operate.

Anyway, the surgeon felt these diaphragm mets might have been caused

by the previous surgery when the colon surgeon did the wedge

resection of the liver met (yes, bad news, I hate to say it, but

surgery CAN spread cancer) or by direct contact with the removed

surface met rather than hemotologic or lymphatic spread (if I am

REALLY, REALLY LUCKY this will be the case). When they looked at the

removed right lobe, they determined that the previously resected

surface met in question really DID have positive margin. So while I

may still be (and probably am) up the creek, if I had not had this

surgery done I would GUARANTEED be up the creek. I really kind of

suspected that before going in for the surgery. I remain convinced

surgery was the correct course of action for my situation.

From my research prior to surgery, I had been considering RF ablation

as it seemed much easier. In a way I really wanted to do Radio Frequency

ablation rather than surgery, but ultimately decided not to because

(1) of remarks made by my colon surgeon indicating he felt he did not

get good margin on the liver met he removed (which turned out to be

the case) (2) the idea that the right side of the liver might be more

" seeded " than the left since all of the visible mets were there – may

get lucky and ALL of the seeding is there, who knows, in which case I

thought surgery could even " cure " me (3) I knew the scans weren't

very good and the only real way to see what is going on is to undergo

some type of surgery so they can take a look and find out for sure,

maybe resecting easy mets during the surgery which they DID. (4) all

of the literature says surgery is really the ONLY potentially

" curative " therapy – it has been studied a lot more than the other

techniques and I thought I should go ahead and do it for an initial

shot at " cure " . And that's a quick summary of why I say surgery is

really the best.

Everything went fine following liver surgery (although I gotta admit,

this one was quite a bit harder than colon surgery to recover from,

they make a HUGE incision and they cut A LOT of muscle!), until the

end of Nov 2001 when my CEA rose to 6.3. At that time I decided NOT

to do the " recommended " CT scan but instead insisted on a combined

CT/PET scan – I was one of the first patients to be scanned on

Indiana University's new Siemens combo scanner. The following is a

post I made on another BB a couple days after the scan.

**********************************************************************

Well, Monday (Dec 10) it was my turn to hop up on the table to be

scanned – just another fun morning with those nice people in the

white coats. There's a few aspects of this story others may find

useful so I will go into a bit of detail here.

One of the things I've consistently advocated on this board is that

ALL cancer patients ought to go to a major cancer center periodically

– if for no other reason than just to stay in touch with the new

developments and such going on in these places a local oncologist is

probably unaware of. Let me give you a specific example of what I

mean.

Today I went to the Indiana University Radiology Dept. and was

scanned on a Siemens combination PET/CT scanner

_http://www.siemens.com/page/1,3771,250070-1-999_0_106-186-_

(http://www.siemens.com/page/1,3771,250070-1-999_0_106-186-)

ps_2845_parps_157_pt_2,00.html

There are currently 4 of these in operation: 1 in each of Europe, U

Pittsburgh, Sloan Kettering, and Indiana University. Undoubtedly

there will be more rolling out soon, and this machine will eventually

REPLACE the current PET scanner (Note: GE has a similar machine in

operation at s Hopkins and probably elsewhere I am offhand

unaware of). IU doesn't seem to be advertising the machine yet for

some reason, so now you, dear reader, know something most people

don't - genuine " inside information " of the sort I always try to

encourage others to share on these BB's. Anyway, it's an awesome

machine, they store all of the images electronically so that doctors

at other institutions can connect to IU's computer and view them

using the proper software. I will also be getting a CD myself with

some of these images converted to jpeg files (view with Internet

Explorer for example).

The scan itself is very similar to the usual PET scan. HOWEVER, you

go thru the combo scanner 2 times: the first time takes about 80

seconds and is for an uncontrasted CT. The second takes about 40

minutes and is for the PET (same machine). You have to be very still

so that you don't change position during all this or it will screw up

and the software won't be able to combine the scans properly!

After going thru the combo scan, because it is so new they asked me

to ALSO do their regular PET scan (on their old machine) too, because

all of the docs have been using the old PET for so long and are very

used to it. As there was no extra charge, I did this second scan.

The cost (I had to pay for it myself) for the combo scan is identical

to what they would have charged for the " old " PET: $2400. Lucky me,

I get 2 scans for the price of one.

NOTE: During the course of conversation about the radioactive

injection, the topic of CEA-Scan came up – I was asked if I wanted to

use it (!!!) I was kind of floored because I doubt most patients

would have ever heard of it, let alone have an opinion! I had heard

of it previously because I remembered seeing this

_http://www.cea-scan.com/main.htm_ (http://www.cea-scan.com/main.htm)

and my impression from previous research was that Cea-Scan is

probably NOT as good as FDG. The techician seemed to confirm, said

he had generally seen better results with the FDG (so that's what I

went with). And you wonder why I say you better read everything in

sight before you go talk to these people! Hey buddy, can I help you

set up the machine? Why let me get my copy of " PET for Dummies " and

I'll be right with you….

So anyway, with a PET scan I figure even a dolt like me can read

these suckers (well I'm arrogant enough to believe that), so

naturally I demanded a look after they finished. They have to let you

see if you ask, after all you're paying for it, BUT the catch is

they will refuse to tell you what you're looking at. With a PET,

though, even a complete idiot can " read " them, `cause the mets are

the " bright spots " – usually. " Ooh , looks kinda brite, what's

that?! " I said, pointing to a huge glow. " That's your bladder, sir "

the guy says. Well it can't be one huge met `cause I can still pee,

so maybe that's normal for it to " lite up " a bit. He seems to agree

but won't really say. " How `bout that one? " " That's your heart, the

muscles usually glow and that's normal " . Hey great, so you CAN talk

after all! " Hmm, now there's a glow, but that one looks pretty small,

what do you suppose it is? " I said. No comment. Well…it appears in

the middle of the liver… do I need a radiology degree to know what

this is? So there's the reason my CEA is up! I knew something was

wrong, just didn't know what. I also knew my liver must look like a

mess on CT with all the scarring and such and they would likely NOT

be able to distinguish scar tissue from met with the much cheaper

" recommended " CT scan. But with the combo scan even someone with NO

experience in reading scans can pretty easily size up the deal.

That's why I insisted on the new combo scan even though I had to pay

$2400 for it out of pocket.

Well, the good news is there only seemed to be ONE " Unidentified

Glowing Object " on the screen (that I could see at least), AND its in

the liver NOT the lungs, so in a way that doesn't seem so bad. I got

almost 6 months remission since my liver surgery in June, I've felt

good, all quality time here, can't complain about that. I've been

prepared for recurrence awhile now - being ready for a day like today

is why I surf the net all the time to try and figure out what the

options are! NOTE: I wrote the above yesterday. Today I got the PET

scan report back – a single " small " liver met was confirmed.

What comes next? Well, I'm not sure I feel like doing another liver

surgery even if they say I can – I'm still not completely healed from

the first one and my wife already tells me I look like enstein

with these scars all over me (but honey, think of the money we can

save at Halloween on the costume!) I've been reading about IMRT and

Conformal Radiation and RF Ablation and such on the `net, and I've

suggested to many people on this board that they should look into it

further. So now I'm going to take my own advice – try to figure out

which way to go from these choices. Naturally, my starting point

will be IU – need to find out what they can do, and then I will have

to compare with what they can do at some good centers elsewhere – for

example Cleveland Clinic kinda stands out in my mind as a pretty

decent place. I will let you know what I find out, perhaps this will

be of help to others in a similar circumstance to my own. But….

although I will be asking some docs questions during the next week or

two, I AIN'T DOIN' NUTHIN TILL AFTER CHRISTMAS!!! I demand at least

one more good holiday! And not only that, I am going to suspend this

diet I'm on for a couple days and eat all the chocolate covered

cherries and other " holiday food " I feel like that I know is terrible

for cancer patients but tastes so good!

**********************************************************************

NOTE: I have posted the results of this combined PET/CT scan in the

" photos " section of this board so that you can compare the CT scan

(uncontrasted), the PET scan, and the combo scan images for

yourself. Keep clicking on the picture and it will enlarge several

times so that it finally becomes a full screen image and you can see

everything clearly.

Following the scan, I made an appointment with a surgeon, my regular

oncologist, and a radiation oncologist at IU to discuss options.

Well first I see the regular oncologist, he asks me what I want to

do. I mention Surgery, RF Ablation and IMRT as the 3 main options I

would consider (having refused Camptosar a couple times now he knows

better than to bother asking if I want that!). So he sends me off to

the Surgeon.

The SURGEON says this recurrence is resectable, and that SURGERY

would be considered the " standard of care " . However, as I noted

above I still don't feel thrilled about that...so I asked him about

the possibility of doing RF ablation instead. He said " yes, that is

a possibility, BUT... " (oh no, the ever present BUT!) " the met is

very near an artery and RF ablation may not work well in this

situation " . I was aware of the limitations of RF ablation from

previous research - what he was talking about is discussed on the

Duke University web page

_http://www.radweb.mc.duke.edu/info/rfa.htm_

(http://www.radweb.mc.duke.edu/info/rfa.htm)

specifically

" Tumors adjacent to a major blood vessel often recur locally since

the blood vessel itself draws heat away from the area during the

treatment, the so-called " heat sink phenomenon " . As a result, the

tumor cells next to the blood vessel cannot get hot enough to acheive

cellular death "

What's even worse than that is because of the location of the met, he

DOES NOT want to do " laproscopic RF ablation " (see the Duke article

for description of the different ways RF Ablation can be done), but

would do the FULL INCISION FOR A LIVER LOBECTOMY because " we'd have

to open you up if anything went wrong (e.g. if they nicked the artery

and you start to bleed to death), and there wouldn't be time to " open

you up " AFTER something goes wrong! " Yecch, this does not sound

promising!

Okay, 2 docs down, is this strike 3 and I'm out or what? So I next

began talking with the radiation oncologist (RO). What luck, it

turns out that IU is one of a growing number of institutions doing

precision radiation (IMRT, Conformal Radiation, Extra Cranial

Stereotactic Radioablation). For references on this see

_http://ourworld.compuserve.com/homepages/suthercon/radiat.htm_

(http://ourworld.compuserve.com/homepages/suthercon/radiat.htm)

and also see the more recent references I have collected on on my

other BB

_http://clubs.yahoo.com/clubs/experimentalandunconventional_

(http://clubs.yahoo.com/clubs/experimentalandunconventional)

specifically posts 168, 156-158, 117, 108,109, 85, 27, 26, 20

This sounds better. According to the RO, being next to an artery

DOES NOT compromise the efficacy of Stereotactic Radioablation (SR)

nearly so much as it does RF Ablation. I told the RO I'd think about

it over the holidays.

Well, I got back from vacation yesterday…and I called the RO and told

her so far as I am concerned everything is a " go " for SR. Next week I

am supposed to go in for ANOTHER combined PET/CT scan….this one has

to be done when I am INSIDE the " body frame " (see #157, 158, and 109

experimentalandunconventional). The reason for another combo scan

is to assist in the radiation planning as noted in post #109. AFTER

that, they can do the " simulation " (forward planning, as opposed to

inverse planning on the newer Varian machines) to determine if

they're going to run into problems setting up the beams. Yes,

unfortunately there are risks to everything, even the supposedly

" easy " Stereotactic Radioablation...if the geometry is such that the

beams have to go thru intestine then there is risk of intestinal

perforation. Well, I'll deal with that if and when the time comes –

they'll be able to tell me if it is likely to happen after the

simulation and depending on what they say I will decide for SURE then

whether or not I will undergo the procedure. Oh, yeah, and the other

thing I'm really worried about is…I had better not get sick

(cold/flu) in the middle of these treatments or I will be in real

trouble. You have to be immobilized for 30-40 minutes for each of

the 3 sessions, and if you're coughing and hacking, etc. that would

be impossible. For that matter, I had better not get sick before the

treatment starts or they will have to postpone! Right now, if

everything goes as planned the EARLIEST I could start treatment is

Jan 20 or so. And the bad news is...I feel a sore throat coming on!

Well maybe I'll get lucky and be over it by the end of next week…

So that's where things stand as of this weekend. I'll let you know

more about the procedure as I discover it myself.

Best Wishes,

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