update

[Guest guest]

Hi ,

I was wondering how the doctor knew the spots on my moms liver were mets

not cysts. The doctor said she knew they were lesions because her CEA

level was 67. She had surgery in April and they found several 2cm lesions

on her liver several months later after a CT scan. She just finished her

first round of 6 chemo treatments. Tolerated them really well. The doctor

said yesterday they are basically " treating " the cancer in the liver.

Meaning that they are just trying to keep it from growing- and it cannot be

cured. She ordered another blood test to look at the CEA level and a CT

scan for next month. I am devastated each time we see the doctor. She

has nothing positive to say....

" altman23 "

<altman23@yah To:

colon_cancer_support

oo.com> cc: (bcc:

Bucholz/AGConsult)

Subject: Re:

Update

09/10/2002

09:54 PM

Please

respond to

colon_cancer_

support

Hi Cliff,

Hang in there man....overall I think this is a very positive report!

A lung met DISAPPEARED and a liver met shrunk 50%, you ARE doing

great!!! Regarding #3, keep in mind the part that says " While this

has the appearance of bowel " . That means they DON'T KNOW what they

are looking at and it very well could be normal bowel!!! CT scans

are notoriously inaccurate and difficult to interpret. Don't assume

the worst here!

I heard the results of my own CT on Friday. According to the

radiologists written report, there are 2 NEW METS in my liver!!! But

when the surgeon took a closer look at the scans, compared them to

previous ones, etc., he concluded (Monday) that at least one and

probably both " new mets " are really cysts! Now I've been thru this

before - the first time shortly after diagnosis when they claimed I

was inoperable due to " mets on both lobes of the liver " , half of

which turned out to be cysts on closer inspection. So remember

there can be a LOT of error in these " reports " - and don't believe

everything you read ! (PLUS, I think with CT, questionable stuff

outside the liver is even harder to interpret than that inside the

liver!)

Best Wishes,

PS Thanks for posting the Anticoagulant/Vitamin interaction stuff!

> Got the results back from my recent spiral scan. The largest met

which

> was 4 CM is now 2 CM. My CEA level was 60.4 on 6/17 is now 28.5

after 8

> weeks of treatment. They told me that I am doing great and started

> another cycle of the Xeloda/Celebrex along with my alt stuff today.

Here

> is their findings ... two out of three look good .. 1. Nodularity

in

> the lungs as noted above. These are more in favor of representing

> peripheral portions of the vessels as compared to true nodular

densities

> although neoplastic disease cannot be totally excluded. The nodular

> density seen in the left lung base on the prior CT of the abdomen of

> July 02 is not seen on today's study. .. 2. Overall improvement of

> heptatic lesions when compared to the prior study. ... 3. ( sigh )

> Suggestion of mesenteric lymph node in the left mid quadrant, versus

> bowel loop. On a prior page ... There is a low density area which

> appears to be within the bowel loop in the left mid quadrant at the

> level of the left renal artery. This however is larger than on the

prior

> exam. While this has the appearance of bowel, the possibility of

other

> processes, including neoplastic process cannot be excluded. A lymph

node

> in this area is a consideration.This measures up to 3 CM . I will

find

> out what all this means next Monday. Take care and God bless.

Cliff . .

> . " Be ready when opportunity comes. ... Luck is the time when

> preparation and opportunity meet. " . . Roy Chalin, Jr . . . . "

ALL

> things are possible. Pass it on. "

[Guest guest]

Hi,

Can you tell me any more about your Mom's surgery/history - did she

have colon resection or liver resection? She was a stage III with

recurrence in the liver a few months after colon surgery?

If your Mom currently has a couple 2cm lesions on her liver, she is

probably a candidate for RFA!!! Did you see this very encouraging

story

http://www.sciencedaily.com/releases/2002/09/020909064106.htm

I've had this procedure done myself, and I can tell you its EXACTLY

like the guy (he is 78 years old!) says - you are FULLY RECOVERED in

about a week!!!

Best Wishes,

>

> Hi ,

> I was wondering how the doctor knew the spots on my moms liver were

mets

> not cysts. The doctor said she knew they were lesions because her

CEA

> level was 67. She had surgery in April and they found several 2cm

lesions

> on her liver several months later after a CT scan. She just

finished her

> first round of 6 chemo treatments. Tolerated them really well.

The doctor

> said yesterday they are basically " treating " the cancer in the

liver.

> Meaning that they are just trying to keep it from growing- and it

cannot be

> cured. She ordered another blood test to look at the CEA level and

a CT

> scan for next month. I am devastated each time we see the

doctor. She

> has nothing positive to say....

>

>

>

[Guest guest]

My mom just turned 78 last month. She had a colon resection in April and

diagnosed with stage III colon cancer at the time of her surgery due to 2

of 5 lymph nodes positive. She had a CT scan several months later which

revealed several small " suspicious " lesions on the liver. Her oncologist

said we could do nothing, which means she would start to have problems in a

few months due to the growth of the tumors interfering with internal

organs. Or she could try chemo to see how she would tolerate it in the

hopes it would keep the tumors from getting any larger. She has had no

ill side effects from the chemo except for being extra tired. After her

first 6 weeks of treatment the oncologist asked if we wanted to continue

the chemo. I was really surprised and responded, " why wouldn't we " . Her

response was to say that we are only " treating " the cancer at this point.

So I took that to mean that my mom would be on chemo the rest of her life??

She is scheduled for blood work next week to check the cea level and

another ct scan next month to see if the chemo is effective.

I have not heard of RFA so I will take a look.

" altman23 "

<altman23@yah To:

colon_cancer_support

oo.com> cc: (bcc:

Bucholz/AGConsult)

Subject: Re:

Update

09/11/2002

02:25 PM

Please

respond to

colon_cancer_

support

Hi,

Can you tell me any more about your Mom's surgery/history - did she

have colon resection or liver resection? She was a stage III with

recurrence in the liver a few months after colon surgery?

If your Mom currently has a couple 2cm lesions on her liver, she is

probably a candidate for RFA!!! Did you see this very encouraging

story

http://www.sciencedaily.com/releases/2002/09/020909064106.htm

I've had this procedure done myself, and I can tell you its EXACTLY

like the guy (he is 78 years old!) says - you are FULLY RECOVERED in

about a week!!!

Best Wishes,

>

> Hi ,

> I was wondering how the doctor knew the spots on my moms liver were

mets

> not cysts. The doctor said she knew they were lesions because her

CEA

> level was 67. She had surgery in April and they found several 2cm

lesions

> on her liver several months later after a CT scan. She just

finished her

> first round of 6 chemo treatments. Tolerated them really well.

The doctor

> said yesterday they are basically " treating " the cancer in the

liver.

> Meaning that they are just trying to keep it from growing- and it

cannot be

> cured. She ordered another blood test to look at the CEA level and

a CT

> scan for next month. I am devastated each time we see the

doctor. She

> has nothing positive to say....

>

>

>

[Guest guest]

What chemo is she on?

<<So I took that to mean that my mom would be on chemo the rest of

her life??>>

Depends on (1) Patient choice and (2) whether or not the chemo is

working. If the tumors are growing while she is on chemo, then it

isn't working and it would not make sense to continue with that

particular chemo.

For MOST patients with liver mets, chemo cannot " shrink " the mets

down to " nothing " . If she's on 5-FU/Leucovorin, I think there is

under a 20% chance (verify with oncologist!) this will have any

effect on " shrinking " the tumors at all! On the other hand, RFA can

STOP MOST small mets immediately, like an 80-90% chance the met is

permanently " killed " . It may not be " curative " because

the patient could have " metastatic seeding " (e.g. cancer cells loose

in the liver or elsewhere) too small to see with scans or even

directly during surgery, and these develop into tumors later.

Has your mother been to a major cancer center for a

consultation/second opinion? If so, they probably would have told

her about RFA. It might be worth looking into!

Best Wishes,

>

> My mom just turned 78 last month. She had a colon resection in

April and

> diagnosed with stage III colon cancer at the time of her surgery

due to 2

> of 5 lymph nodes positive. She had a CT scan several months later

which

> revealed several small " suspicious " lesions on the liver. Her

oncologist

> said we could do nothing, which means she would start to have

problems in a

> few months due to the growth of the tumors interfering with internal

> organs. Or she could try chemo to see how she would tolerate it in

the

> hopes it would keep the tumors from getting any larger. She has

had no

> ill side effects from the chemo except for being extra tired.

After her

> first 6 weeks of treatment the oncologist asked if we wanted to

continue

> the chemo. I was really surprised and responded, " why wouldn't

we " . Her

> response was to say that we are only " treating " the cancer at this

point.

> So I took that to mean that my mom would be on chemo the rest of

her life??

> She is scheduled for blood work next week to check the cea level and

> another ct scan next month to see if the chemo is effective.

>

> I have not heard of RFA so I will take a look.

>

[Guest guest]

Cliff,

Sounds like things are going well for you! Maybe you'll want to try a PET

scan to check out the third item, may clarify what it is. Keep us posted,

you are an inspiration to each of us )

Take Care,

Kathy O.

Update

> Got the results back from my recent spiral scan. The largest met which

> was 4 CM is now 2 CM. My CEA level was 60.4 on 6/17 is now 28.5 after 8

> weeks of treatment. They told me that I am doing great and started

> another cycle of the Xeloda/Celebrex along with my alt stuff today. Here

> is their findings ... two out of three look good .. 1. Nodularity in

> the lungs as noted above. These are more in favor of representing

> peripheral portions of the vessels as compared to true nodular densities

> although neoplastic disease cannot be totally excluded. The nodular

> density seen in the left lung base on the prior CT of the abdomen of

> July 02 is not seen on today's study. .. 2. Overall improvement of

> heptatic lesions when compared to the prior study. ... 3. ( sigh )

> Suggestion of mesenteric lymph node in the left mid quadrant, versus

> bowel loop. On a prior page ... There is a low density area which

> appears to be within the bowel loop in the left mid quadrant at the

> level of the left renal artery. This however is larger than on the prior

> exam. While this has the appearance of bowel, the possibility of other

> processes, including neoplastic process cannot be excluded. A lymph node

> in this area is a consideration.This measures up to 3 CM . I will find

> out what all this means next Monday. Take care and God bless. Cliff . .

> . " Be ready when opportunity comes. ... Luck is the time when

> preparation and opportunity meet. " . . Roy Chalin, Jr . . . . " ALL

> things are possible. Pass it on. "

>

>

>

>

[Guest guest]

She is on 5-FU/ Leucovorin. She is on the Kaiser plan, so no we have not

been to a major cancer center. The RFA sounds very promising because my

mom would not be able to handle regular surgery to remove the mets even

though they are on the same area of the liver.

" altman23 "

<altman23@yah To:

colon_cancer_support

oo.com> cc: (bcc:

Bucholz/AGConsult)

Subject: Re:

Update

09/11/2002

03:22 PM

Please

respond to

colon_cancer_

support

What chemo is she on?

<<So I took that to mean that my mom would be on chemo the rest of

her life??>>

Depends on (1) Patient choice and (2) whether or not the chemo is

working. If the tumors are growing while she is on chemo, then it

isn't working and it would not make sense to continue with that

particular chemo.

For MOST patients with liver mets, chemo cannot " shrink " the mets

down to " nothing " . If she's on 5-FU/Leucovorin, I think there is

under a 20% chance (verify with oncologist!) this will have any

effect on " shrinking " the tumors at all! On the other hand, RFA can

STOP MOST small mets immediately, like an 80-90% chance the met is

permanently " killed " . It may not be " curative " because

the patient could have " metastatic seeding " (e.g. cancer cells loose

in the liver or elsewhere) too small to see with scans or even

directly during surgery, and these develop into tumors later.

Has your mother been to a major cancer center for a

consultation/second opinion? If so, they probably would have told

her about RFA. It might be worth looking into!

Best Wishes,

>

> My mom just turned 78 last month. She had a colon resection in

April and

> diagnosed with stage III colon cancer at the time of her surgery

due to 2

> of 5 lymph nodes positive. She had a CT scan several months later

which

> revealed several small " suspicious " lesions on the liver. Her

oncologist

> said we could do nothing, which means she would start to have

problems in a

> few months due to the growth of the tumors interfering with internal

> organs. Or she could try chemo to see how she would tolerate it in

the

> hopes it would keep the tumors from getting any larger. She has

had no

> ill side effects from the chemo except for being extra tired.

After her

> first 6 weeks of treatment the oncologist asked if we wanted to

continue

> the chemo. I was really surprised and responded, " why wouldn't

we " . Her

> response was to say that we are only " treating " the cancer at this

point.

> So I took that to mean that my mom would be on chemo the rest of

her life??

> She is scheduled for blood work next week to check the cea level and

> another ct scan next month to see if the chemo is effective.

>

> I have not heard of RFA so I will take a look.

>

[Guest guest]

I have some references on RFA here

http://ourworld.compuserve.com/homepages/suthercon/rfa.htm

Be sure you see the " physician search " on the livertumor.org site

http://www.livertumor.org/physician.asp

The " easiest " RFA is called " percutaneous RFA " , and it means they

don't " operate " at all, needles go directly thru the skin into the

tumor directed by Ultrasound and/or CT. Whether or not they can do

this depends on the LOCATION of the tumor. For example, some tumors

may be so deep inside the liver that the ultrasound couldn't image

them without being placed directly on the liver. So sometimes they

have to do " laproscopic RFA " , but thats still a pretty easy

procedure. The " worst " (most difficult) type is called " open

surgery RFA " , and thats where they have to make an actual incision to

do the procedure. You have to have your mother's case reviewed by

the surgeon to see which types of RFA she is eligible for.

This site http://www.cc.nih.gov/drd/rfa/ gives a good intro to all

these things. See http://www.cc.nih.gov/drd/rfa/frame-patient.html

If you're interested in pursuing, the sooner the better because the

bigger the tumor, the harder it is to treat!

Best Wishes,

>

> She is on 5-FU/ Leucovorin. She is on the Kaiser plan, so no we

have not

> been to a major cancer center. The RFA sounds very promising

because my

> mom would not be able to handle regular surgery to remove the mets

even

> though they are on the same area of the liver.

>

[Guest guest]

:

Have an absolutely wonderful time! You certainly deserve it!!

All the best,

Amie

[Guest guest]

,

I'm glad you're recovery continues to go well. Now, this may sound strange,

but I decided to discontinue exercise after my recurrence was diagnosed

6/02 - reason is that I don't want to circulate the lymphatic fluids or

blood too much knowing that cancer cells are in there. SO, I have been

laying low for now. My oncologist got a good laugh out of this one, maybe

you all will too! But in my simple mind, it seems logical! LOL !!

Take Care,

Kathy O.

Update

> Hi All,

>

> Well I went back to the surgeon today for my followup visit and I

> FINALLY got rid of the bellyful of staples from the surgery a few

> weeks ago! It sure feels a lot better now LOL

>

> Recovery from surgery has been uneventful. I feel " pretty much

> normal " now, with maybe a little more stiffness than before the

> operation. Doesn't stop me from doing anything though, so this has

> been ok. Forgot to ask him when I can start exercising again (I

> already do a lot of walking, I am refering to everything else such as

> situps, etc. which ought to help the soreness!). Guess I will have to

> call him later.

>

> Surgeon wants me to do another CEA " soon " ....the last time I

> had one (several weeks pre-surgery), it was going up like a rocket

> and hit 31! Man that was scary....who knows where it would have been

> if they checked right before the operation? 40's or 50's or ???? I'm

> almost afraid to see where it is now...not ready for MORE doctors and

> hospitals and scans and procedures if it hasn't gone down, I gotta

> have a break from this stuff longer than a couple weeks!!!

>

> Best,

>

>

>

>

>

>

[Guest guest]

I know what you mean Kathy, so much is unknown and sometimes it seems

impossible to know what you " should " be doing!

I'm certainly no expert, but I've read a little bit of scientific

stuff regarding what doctors THINK are the mechanisms of metastasis

which I'll try to summarize in a post later (I don't think they

really know though!). I'll just say now that I've never seen (from

either conventional or alternative sources) anything to hint that

exercise would be bad for you (except if you really don't feel like

it, of course you shouldn't do it!). Guess we should always keep in

mind that a LOT is not known and ANYTHING is possible LOL!

Best Wishes,

,

> I'm glad you're recovery continues to go well. Now, this may sound

strange,

> but I decided to discontinue exercise after my recurrence was

diagnosed

> 6/02 - reason is that I don't want to circulate the lymphatic

fluids or

> blood too much knowing that cancer cells are in there. SO, I have

been

> laying low for now. My oncologist got a good laugh out of this

one, maybe

> you all will too! But in my simple mind, it seems logical! LOL !!

> Take Care,

> Kathy O.

>

[Guest guest]

Hi , my mom's CEA was 67 after her

surgery and 7.9 after 10 rounds of chemo. She has had a four week break on

the chemo due to diarrhea and vomiting- we go in for the results of a

recent CT scan this Friday. I am sure the onc will make a recommendation on

whether to continue with chemo. I say why not if it is lowering her CEA and

reducing the size of her mets in the liver. I hope the lower CEA has

resulted in a reduction of the mets. She has 2 mets (2cen) on the liver.

altman23

11/04/2002 08:59 PM

Please respond to colon_cancer_support

To: colon_cancer_support @SMTP@Exchange

cc:

Subject: Update

Well, I got the CEA results today from my

test last week (1 month

after surgery), and it is 7.1.  The previous

reading was about a

month before surgery, it was 31. 

Hmmm....not sure what to make of

this.

On the positive side, at least it went DOWN

rather than stay the same

or go up and I guess that means nothing is

" raging out of control " .

Who knows how bad CEA actually was at the

TIME of surgery, it must

have been a lot worse than 31 the way it was

shooting up like a

rocket!  Guess I should have gotten it

tested on surgery day - the

doctor must have forgotten, I remembered but

was too scared to find

out how bad things were!

On the negative side, I would have hoped a

month after surgery (which

supposedly got ALL VISIBLE disease), it

might have been a little

lower, like below 3 (sigh!). Maybe another

met " came up " in the last

month not seen during surgery. Or maybe 1

month just isn't long

enough. I suppose it is POSSIBLE that CEA

will continue to fall and

if I repeat the test next month it will

improve.  But I dunno....not

sure I really believe that....

When I stop and think about the whole

situation as objectively as I

can, it just hit me that I have not had a

" normal " CEA for a whole

year now!  It started rising 1 year ago

(last Nov) prior to

recurrence #1, went down SOME after

treatment (to about 4), rose for

recurrence #2, goes down SOME after

treatment...is there a pattern

here LOL!  After each treatment I always

ASSUMED it would go back to

the normal range, but somehow....

Ah, well, who says you gotta have a " normal "

CEA!!!  Doesn't

seem to affect the way I feel physically,

although I find it

psycologically " disturbing " !

Best,

[Guest guest]

,

Another hang in there from me! My cancer didn't produce whatever affects

the CEA level - so I don't even have that as a measuring tool - at least you

have that available to monitor your health. I agree that any of these

marker tests/scans are so tough mentally, but we have to learn to face them

for the rest of our lives. I have come to the conclusion that whatever

results scans show, I have done all that I could possibly do on my part to

eradicate the cancer - the rest is up to God. So, it does me no good to

worry, as it doesn't change anything except to reduce the quality of life

that I have for today. You certainly have and will continue to do

everything possible to eradicate your cancer as well, so take confidence in

that.

Take Care,

Kathy O.

Update

> Well, I got the CEA results today from my test last week (1 month

> after surgery), and it is 7.1. The previous reading was about a

> month before surgery, it was 31. Hmmm....not sure what to make of

> this.

>

> On the positive side, at least it went DOWN rather than stay the same

> or go up and I guess that means nothing is " raging out of control " .

> Who knows how bad CEA actually was at the TIME of surgery, it must

> have been a lot worse than 31 the way it was shooting up like a

> rocket! Guess I should have gotten it tested on surgery day - the

> doctor must have forgotten, I remembered but was too scared to find

> out how bad things were!

>

> On the negative side, I would have hoped a month after surgery (which

> supposedly got ALL VISIBLE disease), it might have been a little

> lower, like below 3 (sigh!). Maybe another met " came up " in the last

> month not seen during surgery. Or maybe 1 month just isn't long

> enough. I suppose it is POSSIBLE that CEA will continue to fall and

> if I repeat the test next month it will improve. But I dunno....not

> sure I really believe that....

>

> When I stop and think about the whole situation as objectively as I

> can, it just hit me that I have not had a " normal " CEA for a whole

> year now! It started rising 1 year ago (last Nov) prior to

> recurrence #1, went down SOME after treatment (to about 4), rose for

> recurrence #2, goes down SOME after treatment...is there a pattern

> here LOL! After each treatment I always ASSUMED it would go back to

> the normal range, but somehow....

>

> Ah, well, who says you gotta have a " normal " CEA!!! Doesn't

> seem to affect the way I feel physically, although I find it

> psycologically " disturbing " !

>

> Best,

>

>

>

>

>

>

>

[Guest guest]

Can anyone direct me to an article on the anti-cancer properties or

possibilities of Celebrex, that I can print out and take to my

doctor at the cancer clinic? I took her the one on Tagamet. She

had never heard of it having anti-cancer properties. Here in

Canada, Tagamet is available by prescription only.

> Hello Group,

> Just thought I would update after my laparascope/incisional hernia

> repair this morning.

>

> Good News: Everything is clean! My original surgery was May, 2002

> (stage III, tumor perforation, 2 lymph nodes of 27 total).

Obviously,

> I still have a long way to go, but I will gladly take this report.

>

> I continue to take Celebrex 200 mg. twice/day and 800 mg.

> tagamet/day. I have used Celebrex since December, 2002 (after

chemo-

> Camptosar, 5-FU and leucovorin-ended Nov, '02) and Tagamet since

> June, 2002. Question: How long should I take Celebrex and Tagamet,

or

> maybe just use Celebrex? I know there are no " proven " answers to

> these questions since niether drug has passed FDA trials, which is

> what my oncologist always points to.

>

> The only info. to draw on re:Tagamet is the LEF article, which had

> patients using the drug for 1 year post-op. The article makes

> reference to one " theory " that microscopic cells are inhibited

from

> attaching to blood vessels in order to form metastatic tumors and

> that the cancer cells are eventually " eliminated. " How are they

> eliminated and how long would this typically take???

>

> Regarding Celebrex, I know chemo attacks rapidly dividing cells

but

> some cancer cells may lie " dormant. " As an angiogenesis inhibitor

(as

> the theory goes), the drug may prevent new tumors from starting or

> slow the growth of existing tumors. I guess my concern here is how

> long do dormant cancer cells normally " hang around? " Maybe the

safe

> thing is to use this as a long term maintenace drug?

>

> Pardon the long message, but the vicoden is making it hard to be

> concise (HA!). Thanks for any thoughts on this subject because,

> again, I realize that there are really no known answers.

>

> Rick G.

[Guest guest]

Hi Rick

Good questions and ones I am sure we would all like answers on. I

look forward to more posts on the subject.

By the way posted a link for Celebrex info on May 26/03 post #

3449.

Regards

> Hello Group,

> Just thought I would update after my laparascope/incisional hernia

> repair this morning.

>

> Good News: Everything is clean! My original surgery was May, 2002

> (stage III, tumor perforation, 2 lymph nodes of 27 total).

Obviously,

> I still have a long way to go, but I will gladly take this report.

>

> I continue to take Celebrex 200 mg. twice/day and 800 mg.

> tagamet/day. I have used Celebrex since December, 2002 (after chemo-

> Camptosar, 5-FU and leucovorin-ended Nov, '02) and Tagamet since

> June, 2002. Question: How long should I take Celebrex and Tagamet,

or

> maybe just use Celebrex? I know there are no " proven " answers to

> these questions since niether drug has passed FDA trials, which is

> what my oncologist always points to.

>

> The only info. to draw on re:Tagamet is the LEF article, which had

> patients using the drug for 1 year post-op. The article makes

> reference to one " theory " that microscopic cells are inhibited from

> attaching to blood vessels in order to form metastatic tumors and

> that the cancer cells are eventually " eliminated. " How are they

> eliminated and how long would this typically take???

>

> Regarding Celebrex, I know chemo attacks rapidly dividing cells but

> some cancer cells may lie " dormant. " As an angiogenesis inhibitor

(as

> the theory goes), the drug may prevent new tumors from starting or

> slow the growth of existing tumors. I guess my concern here is how

> long do dormant cancer cells normally " hang around? " Maybe the safe

> thing is to use this as a long term maintenace drug?

>

> Pardon the long message, but the vicoden is making it hard to be

> concise (HA!). Thanks for any thoughts on this subject because,

> again, I realize that there are really no known answers.

>

> Rick G.

[Guest guest]

Thanks . That article on Celebrex should work fine. I will

print it out and give it to my doctor at the cancer clinic.

Barry

> > Hello Group,

> > Just thought I would update after my laparascope/incisional

hernia

> > repair this morning.

> >

> > Good News: Everything is clean! My original surgery was May,

2002

> > (stage III, tumor perforation, 2 lymph nodes of 27 total).

> Obviously,

> > I still have a long way to go, but I will gladly take this

report.

> >

> > I continue to take Celebrex 200 mg. twice/day and 800 mg.

> > tagamet/day. I have used Celebrex since December, 2002 (after

chemo-

>

> > Camptosar, 5-FU and leucovorin-ended Nov, '02) and Tagamet since

> > June, 2002. Question: How long should I take Celebrex and

Tagamet,

> or

> > maybe just use Celebrex? I know there are no " proven " answers to

> > these questions since niether drug has passed FDA trials, which

is

> > what my oncologist always points to.

> >

> > The only info. to draw on re:Tagamet is the LEF article, which

had

> > patients using the drug for 1 year post-op. The article makes

> > reference to one " theory " that microscopic cells are inhibited

from

> > attaching to blood vessels in order to form metastatic tumors

and

> > that the cancer cells are eventually " eliminated. " How are they

> > eliminated and how long would this typically take???

> >

> > Regarding Celebrex, I know chemo attacks rapidly dividing cells

but

> > some cancer cells may lie " dormant. " As an angiogenesis

inhibitor

> (as

> > the theory goes), the drug may prevent new tumors from starting

or

> > slow the growth of existing tumors. I guess my concern here is

how

> > long do dormant cancer cells normally " hang around? " Maybe the

safe

> > thing is to use this as a long term maintenace drug?

> >

> > Pardon the long message, but the vicoden is making it hard to be

> > concise (HA!). Thanks for any thoughts on this subject because,

> > again, I realize that there are really no known answers.

> >

> > Rick G.

[Guest guest]

Some good questions! There are a few Celebrex references in the

LINKS section (COX-2 Inhibitors in cancer prevention and therapy).

The article I would point a doctor to is this MEDSCAPE " CME Course "

http://www.medscape.com/viewprogram/1994

Summary of what was known as of Sept 2002 ( & I'm sure your doctor can

explore more recent stuff in the journals if he/she is really

interested, using this as a starting point).

Some hint of " how long " to use Celebrex to prevent recurrence might

be gleaned from the clinical trials...go to

http://www.nci.nih.gov/search/clinical_trials/

click on " Prevention " for " type of trial " , and then look at " Bladder

Cancer " , " Lung cancer, non small cell " , " colon cancer " for " type of

cancer " .

The bladder cancer trial gives Celebrex for 2 years... the lung

cancer trial 6 months...the colon cancer trial for sulindac (an NSAID

similar to Celebrex) is for 1 year.

Of course, stage II/III is not considered " cured " until 5 years has

passed, but the time of HIGHEST RISK is the first 2-3 years. The

goal of Celebrex therapy (assuming it does anything) is CURE, so I

would think future trials would probably limit to the first few " high

risk " years (as do the ongoing trials).

I suppose the risk of adverse events will increase as high dose

Celebrex is used for longer periods of time...I think most of the

studies done to date have only looked at a 6 month period WRT these

side effects. Some doctors might therefore be leery of putting

patients on long term Celebrex without more trial evidence of

efficacy, fearing they might be the target of a lawsuit should things

go wrong.

Just a thought!

Best,

Question: How long should I take Celebrex and Tagamet,

> or

> maybe just use Celebrex? I know there are no " proven " answers to

>these questions since niether drug has passed FDA trials, which is

>what my oncologist always points to.

> >

> >

>Regarding Celebrex, I know chemo attacks rapidly dividing cells

> but some cancer cells may lie " dormant. " As an angiogenesis

inhibitor (as

> the theory goes), the drug may prevent new tumors from starting or

> slow the growth of existing tumors. I guess my concern here is how

> long do dormant cancer cells normally " hang around? " Maybe the

> safe thing is to use this as a long term maintenace drug?

[Guest guest]

Some good questions! There are a few Celebrex references in the

LINKS section (COX-2 Inhibitors in cancer prevention and therapy).

The article I would point a doctor to is this MEDSCAPE " CME Course "

http://www.medscape.com/viewprogram/1994

Summary of what was known as of Sept 2002 ( & I'm sure your doctor can

explore more recent stuff in the journals if he/she is really

interested, using this as a starting point).

Some hint of " how long " to use Celebrex to prevent recurrence might

be gleaned from the clinical trials...go to

http://www.nci.nih.gov/search/clinical_trials/

click on " Prevention " for " type of trial " , and then look at " Bladder

Cancer " , " Lung cancer, non small cell " , " colon cancer " for " type of

cancer " .

The bladder cancer trial gives Celebrex for 2 years... the lung

cancer trial 6 months...the colon cancer trial for sulindac (an NSAID

similar to Celebrex) is for 1 year.

Of course, stage II/III is not considered " cured " until 5 years has

passed, but the time of HIGHEST RISK is the first 2-3 years. The

goal of Celebrex therapy (assuming it does anything) is CURE, so I

would think future trials would probably limit to the first few " high

risk " years (as do the ongoing trials).

I suppose the risk of adverse events will increase as high dose

Celebrex is used for longer periods of time...I think most of the

studies done to date have only looked at a 6 month period WRT these

side effects. Some doctors might therefore be leery of putting

patients on long term Celebrex without more trial evidence of

efficacy, fearing they might be the target of a lawsuit should things

go wrong.

Just a thought!

Best,

Question: How long should I take Celebrex and Tagamet,

> or

> maybe just use Celebrex? I know there are no " proven " answers to

>these questions since niether drug has passed FDA trials, which is

>what my oncologist always points to.

> >

> >

>Regarding Celebrex, I know chemo attacks rapidly dividing cells

> but some cancer cells may lie " dormant. " As an angiogenesis

inhibitor (as

> the theory goes), the drug may prevent new tumors from starting or

> slow the growth of existing tumors. I guess my concern here is how

> long do dormant cancer cells normally " hang around? " Maybe the

> safe thing is to use this as a long term maintenace drug?

[Guest guest]

,

Thanks for your reply. Have a great time in Vegas!!!

Rick G.

> Question: How long should I take Celebrex and Tagamet,

> > or

> > maybe just use Celebrex? I know there are no " proven " answers to

> >these questions since niether drug has passed FDA trials, which is

> >what my oncologist always points to.

> > >

> > >

> >Regarding Celebrex, I know chemo attacks rapidly dividing cells

> > but some cancer cells may lie " dormant. " As an angiogenesis

> inhibitor (as

> > the theory goes), the drug may prevent new tumors from starting

or

> > slow the growth of existing tumors. I guess my concern here is

how

> > long do dormant cancer cells normally " hang around? " Maybe the

> > safe thing is to use this as a long term maintenace drug?

[Guest guest]

,

Thanks for your reply. Have a great time in Vegas!!!

Rick G.

> Question: How long should I take Celebrex and Tagamet,

> > or

> > maybe just use Celebrex? I know there are no " proven " answers to

> >these questions since niether drug has passed FDA trials, which is

> >what my oncologist always points to.

> > >

> > >

> >Regarding Celebrex, I know chemo attacks rapidly dividing cells

> > but some cancer cells may lie " dormant. " As an angiogenesis

> inhibitor (as

> > the theory goes), the drug may prevent new tumors from starting

or

> > slow the growth of existing tumors. I guess my concern here is

how

> > long do dormant cancer cells normally " hang around? " Maybe the

> > safe thing is to use this as a long term maintenace drug?

[Guest guest]

Hey Mark .............perhaps attaching a picture of that Doc to the

punching bag would be even better!!! LOL! It never ceases to amaze

me how rude and condescending these doctors can be!!! Glad you let

him have it!!

Donna S.

> Welcome back Mr. !

> So another oncologist fired! I think this makes 4 fired over the

last

> 3 years! It went something like this-

> The local " cancer center " is about 1 mile from my house-making it

> very convenient for pump refills, prescritions etc. The onc I was

> seeing was recently transferred to the NIH-leaving me in the hands

of

> an Onc that had been at the Hospital for may years. By all accounts

I

> was " blessed " to have been lucky enough to get transferred to him.

>

> It is no secret that " the wife of Mark " has been my primary doctor

> over the last couple of years-spending hours on research and

> searching the country for the next promising procedure and option.

> From the time that our original surgeon bundled the original liver

> resection, we felt that it was our responsiblility to find and get

> the treatment that is suitable for me- a 36 year old fit, healthy

> father and husband.

>

> Having said that, I knew this oncologist was in trouble when he

came

> in for our initial meet and greet and barely listened to our

> viewpoint on the progression and our treatment plan. He was

> dismissive and interrupting.

> Since I have had this HAI pump flowing hep/saline for 18 months, my

> wife and I felt it would be beneficial to reduce tumor size in the

> liver by getting FUDR pumped into the unit. It seemed to have

worked

> at MSKCC, and it was an option that had limited side effects. The

new

> Doc said- " we dont do that, in fact I dont even know where to get

FUDR

> anymore-I suggest cpt 11. (of which I have seen prior, and

progressed

> on.) Cordially we didnt accept his reccomendation, and sought out

> another Doc about 20 miles away. This new Doc was like a breath of

> fresh air- " we dont know what will work and what wont at this point-

> lets give the FUDR a try. " The wife of Mark chimed in and then said-

> " how about getting Mark started on Iressa or Thalidomide for the

lung

> spots? " The doc replied- " sounds like a plan-lets give it a go! "

> I COULDNT BELIEVE THE RESPONSE. FOR THE FIRST TIME IN 3 1/2 YEARS

OF

> TREATMENT, WE FINALLY FOUND A DOC THAT ADMITTED THERE WERE NO RIGHT

> ANSWERS. He understood that my wife and I were both resourceful and

> intelligent in regards to the disease and totally took that into

> account during our consultation. He treated us like people.

>

> Because of recent pain, I booked an appointment with the " local

onc "

> to get an increase in the pain med. This was 2 days ago, and I was

> really struggling with the amount of pain. Couldnt even sit at my

> desk or on the exam table. This doc walks in the exam room, and

> doesnt say hello, but meerely says, " I cant treat you if you are

> getting treatment somewhere else-you need to make a decision on who

> you want to treat you. " I reminded him that we searched out this

> other Doc, because his options were essentially nil-He then lied to

> me by saying- " sure I can get FUDR, if that is what you wanted, we

> could have done that! "

> It was at this point that I stood up and said we have made our

> decision, and I wont waste any more time with a liar. After a few

> choice words I left hastily. Truth be told, I really wanted to hit

> the guy-just belt him, for treating us with such little respect or

> regard. I am not a violent man, but I was so angry that because we

> bruised this mans ego by searching out another doc, he was

resorting

> to lies. This doctor treated us like patients that had no idea

about

> the cancer, the treatment or the reality of my situation. The most

> aggravating part about this, is that this man is the creme of the

> crop at that institution. He treats all his patients with careless

> disregard. Beware of doctors like this. They will get you killed!

> I saw the new Onc yesterday-again very positive-gave me my

> prescription for Iressa, again made us both feel like people and

not

> patients.

>

> All the best to everybody-going to sports authority to look for a

> punching bag!

>

> Peace-

> Mark

[Guest guest]

Bonnie,

This really lifts my spirits. I am so happy for you & Pat...

Weir

Mom to Kennedy, 5 yr old CHARGEr, 14, 12 and wife to Graeme

New Brunswick, Canada

Visit our family web site: http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada: http://www.chargesyndrome.ca

Update

Hi everyone. I haven't been on the list in a while because things have

been

quite busy here. Sadly there have been a few deaths in the family,

births, an

illness and my mother got in a car accident. She is fine because of her

SEAT

BELT and AIR BAGS!!! It's scary though because you never know what will

happen from one moment to the next. Nothing is guaranteed in life.

I really have wanted to update everyone about Pat and how she is

doing

at the Helen Keller National Center but there are so many good things this

could take forever. Since I still don't have time this will be a quick

little

update. The most important thing is Pat is Happy! She has made a friend

with

a young lady who she is now a roommate with-because of their choice! This

doesn't sound big but it is. She lacked so many social opportunities here

at

home. She laughs and giggles on the phone. Her classes (?) are going

well, like

orientation and mobility. She has a new cane with this ball thing on the

end. Before she refused to use a cane but now she is finding it gives her

more

independence and she shared she is happy with that. There is so much more

but

I'll get to that another day.

One of the best and most important things is that she is now happy

were she is and seems to have very little homesickness. I have to tell

her to

call me! People just can't understand how thrilled we are with that. We

have

worked so hard for or with her entire life that now it is up to her (kind

of)

to go further. She needed this space. Other children don't have so much

parent involvement, and now she has that space she desperately wanted and

deserves.

Sadly though I remain having to keep ahead of everything. Social Security

still is playing the bureaucratic games... We need a national deaf/blind

definition for adults. I hope by the time all your children are older the

transitions go smoother.

It doesn't matter though. Right now, this day is a good one. I

also

hope all is well with everyone.

Take care and best of thoughts.

Bonnie, Mom to Kris now 21, Pat CHARGE now 19, and wife to who all of

this is great now because he has my total attention.

[Guest guest]

Bonnie,

I should have read this email first. I ask about Pat on an other message.

I am so happy she is happy. too loves the independence. I understand

completly what you mean. Yes, I understand how it feels. I think is more

used to being away than we are used to having her gone. She did enjoy being home

this weekend. It was more the home cooking than Doug and I ( not really).

Doug too enjoys my undivided attention when I am home. He works night and I

teach days so the time is limited but wonderful. At least here the " empty nest "

is a blessing not a problem.

Hang in there with all the " red tape " . You are a fighter and will " win "

what you need to for Pat.

Blessing and Hugs,

Lynn

Mom to Tom24, 19 cHARGE, and wife to Doug

Update

Hi everyone. I haven't been on the list in a while because things have been

quite busy here. Sadly there have been a few deaths in the family, births, an

illness and my mother got in a car accident. She is fine because of her SEAT

BELT and AIR BAGS!!! It's scary though because you never know what will

happen from one moment to the next. Nothing is guaranteed in life.

I really have wanted to update everyone about Pat and how she is doing

at the Helen Keller National Center but there are so many good things this

could take forever. Since I still don't have time this will be a quick little

update. The most important thing is Pat is Happy! She has made a friend with

a young lady who she is now a roommate with-because of their choice! This

doesn't sound big but it is. She lacked so many social opportunities here at

home. She laughs and giggles on the phone. Her classes (?) are going well,

like

orientation and mobility. She has a new cane with this ball thing on the

end. Before she refused to use a cane but now she is finding it gives her

more

independence and she shared she is happy with that. There is so much more but

I'll get to that another day.

One of the best and most important things is that she is now happy

were she is and seems to have very little homesickness. I have to tell her to

call me! People just can't understand how thrilled we are with that. We have

worked so hard for or with her entire life that now it is up to her (kind of)

to go further. She needed this space. Other children don't have so much

parent involvement, and now she has that space she desperately wanted and

deserves.

Sadly though I remain having to keep ahead of everything. Social Security

still is playing the bureaucratic games... We need a national deaf/blind

definition for adults. I hope by the time all your children are older the

transitions go smoother.

It doesn't matter though. Right now, this day is a good one. I also

hope all is well with everyone.

Take care and best of thoughts.

Bonnie, Mom to Kris now 21, Pat CHARGE now 19, and wife to who all of

this is great now because he has my total attention.

[Guest guest]

Bonnie,

Thanks for the update. I can't possible emphasize enough how much Pat's

progress gives us all so much hope.

Best :-)

Anne, mom of Penina (CHARGE, 7)

[Guest guest]

hi all, I want to comment on Michele's post concerning Chantelle. I agree with

her and thought about posting something along those lines...I believe she said

it very well. Everyone is entitled to their opinion....however going after

someone for any reason is not appropriate here or in life.

I also wanted to tell you about our new developments regarding Timmy. We are

going to get his new orthotics today. he is handling it better than I. I know

it's what is best for him, but....you always hope it will get better not worse.

he locks his knees when he walks, so, his new splints are above the knee to

prevent that----otherwise, he may blow out his knees. not soemthing we want to

happen.

On tuesday, I am going to see a phsycologist about tim, and then we will set up

an appointment for him. the ped. did not want to put him on meds for the

behavior--panic --obsessive stuff etc. w/out first seeing the phsycologist. so

we are--or I am. also the insurance will not pay for a nutrionalist--so we have

to get letters from docs etc. to fight them.

and he's up to his old tricks again of " I CAN'T " I was sick the other day, so

Pat helped with homework, he got him started and then was cleaning up from

dinner. came back to check and saw the worst writing ever. needless to say it

wasn't a happy scene. I sent a note in the next day because the paper was all

messed up. the teacher talked to him and tells me the homework she sends home he

should be able to do by himself--with some direction!!! the little stinker went

up to his room after I showed him what to do and did his homework beautifully

all by himself yesterday!!!

has anyone attended camp hope near bloomsburg pa? I know has, but don't

know if they are on the list. met a family from near there at CHOP last week.

thinking about it for tim this year, since the wonderful state of nj has taken

all funds for ddd to give for camp, unless you use your family support $ that

you get every 2 years.

he really likes camp warren our local camp, but it's $250 a week for 9-3. and

this camp is $200 for sleep away for sunday -friday, plus we could camp near

there and do knobels with the other 2 and little day trips instead of camp for

them. maybe....

I have to get ready to pick up keegan and drive to tim's school and then another

hour away to get splints...oh how a dream of a life of sitting on the couch

eating bon-bons and doing nothing--maybe in my next life :}

maria mom to timmy 8, ChARGE, keegan 5 3/4, liam 3, wife to pat

[Guest guest]

Peggy, don't you dare feel sorry for not "keeping up" or for how much you share with us! The Hospice sound wonderful! I got a laugh out of your MIL's heart monitor quip! LOL Ouch! Whatever happened to your foot, I hope it doesn't happen again. lol It would help to know, eh? lol Is the pain med Percocet? That stuff made me itch! lol I'm really glad you're going camping this weekend. You should and I think it's great that you all know that! ) I've heard of Focalin, but know nothing of it. You're on the ODD list, right? I'm sure you're too busy to read and post to all your lists right now though (unless this went there, as well?) If others here aren't able to help (and I won't be surprised if they are lol), I can post just that bit of your post and see what

responses might come?? I'd like to help, but that's all I know of to offer. A bit Yay for the money finally making it through to you!! ) Hang in there, Peggy. You're constantly in our thoughts and prayers here. We'll be here for you when you're able to come to the list and when you're not. ) HUGS, Challis Peggy wrote: Hi all,Not quite sure

when I wrote last. Days are kind of fuzzy here. I know I have missed sooooo many posts and am sooo far behind with everyone and I am so sorry for that. I hope everyone is doing and feeling well.MIL is not having radiation. She has 2-3 months left. We are hoping to find a room through Hospice at a place called the Siegenthaler Center. It is a beautiful facility and has RN's and CNA's on staff 24/7. They have their meals prepared and get the meds they need. When it comes time they can get meds to be made comfortable. She will have her own room which will be big and private for her. She will also be able to have her own food, whatever she likes and she can eat whenever she likes, a BIG plus for her, as she is a night owl!!!She has signed the DNR form and has been removed from the heartmonitor. She joked and said if she knew that's all it would take toget that off of her she would have done that a long time

ago,lol!!!She is still on the oxygen though. She still struggles to breathe andher blood count of course was extremely low. She is bleedingeverywhere in her body. You'd think she would drown in her own bloodbefore the cancer kills her. They are transfusing her, she still iscoughing up blood but not as much.My idiot BIL has finally realized the finality of her situation butis more concerned with HIS situation. He acts concerned about herwhen around her. When we told her about the stage 4 and the potentialfor success even with treatment he got teary eyed. As he was leavinghe asked his sister to come into the hall and started panickingsaying he couldn't pay for the rent on the house, the electric bill,water bill, garbage bill, phone bill, cable bill, blah blah blah. Hehas to move out of there, what is he going to do? She was pissed tosay the least. God, she's not even gone yet!!!! Roxanne yelled at himand said,

she wasn't going to rent a dumpster tomorrow!!!What he is going to have to do is GROW UP!!! He is 48 YEARS OLD!!!!What age do you become a MAN???? He pays for a car, insurance andsome of his own food. Gas, his cigarettes, and golf. The bulk of hismoney gets pissed away(sorry) at the local bars and gambled awaythere and at the casino. He could have at least $50,000 saved in thebank after all these years living at home. I WISH I had a tenth ofthat right now. I just want to grab him and shake him so hard!!!! Alittle angry, can you tell???? It does no good. We figure he'll beliving out of his car. Of course, his mother is worried the mostabout him. She told me to make sure the family didn't fall apart,that we stuck together and saw each other. We don't see each othernow, why would things be different after? doesn't get alongwith his brother anymore, they are completely opposite, thank God. sees Roxanne. Oh

well.I went to have my foot looked at finally after a week of pain. Iknow, I know!!! I have an infection in my big toe that has spread.Don't ask me how I got it, haven't a clue. I'm on antibiotics and shegave me pain pills but they make me itch. Not good with pain pills,lol!!! Hurts like heck when I walk so I didn't go to the hospitallast night. Couldn't sleep last night so will be tired today. Got myshot sites all screwed up, but I am taking them, some later than others, don't know what's up or down. I feel like I'm waiting for the wall to fall down on me!!!!We are still going to camp this weekend. We have to get away. This iss only vacation and 's weekend off and we are havingZack's birthday party with the family up there. I hope the weather isgood for us.I don't know if I said anything but Zack has been put on Focalin XR.He has to have the pill opened and we put it in a little soda and

hedrinks the beads down fast. He doesn't have the outbursts any morelater in the day, but he seems to be a little more aggressive whenthey do come. Is that normal with Focalin does anyone know? I'mwondering if it's that or if it's just the fact that what's going onand we aren't around alot lately. He did tell my stepmother that helikes to make Mommy and Daddy mad at him. She asked him why and hejust said I don't know. Very interesting.We did finally get the money, they had to wire it into our acct. and they waived the stop check fee of $50 for us. We couldn't cash it because in NY if a check is made out to both people, both people have to appear on the acct. The only acct. we have together is the one that is frozen. The other one we have is at another credit union but we only have a samll savings there and they were going to put a 10 day hold on it because of the size and the fact that it was an out of state

check and not an official bank check. NYS banking laws, very strict. We did get to pay our bills though so that is ok for now. The other acct. is still frozen until we pay the rest of that debt off which is about $2500.OK, all, I have a ton of laundry to fold if we are going anywherethis weekend. Poor Zack has no shorts to wear!!! is going topick up his Sgts. uniforms, another thing I'm not looking forward to,sigh.Miss you guys. Thank you so much for all your prayers and thoughts. Sorry these are always so long!!!!Love to all,Peggy

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