To Betty

[Guest guest]

Donna, just like to confirm what you are saying. I have had someone

staying with me all night following all of my surgeries...I was very

happy that they were there. The " night shifts " in hospitals may be

understaffed....there can be a couple " crises " going on at once and

nobody comes to your room after you push the button. You never know

what is going to happen. When several days have passed and you start

to feel stronger, its not as important, but to have someone there all

night for at least the first night or two is really not a bad idea.

One more thing - be SURE you get a PRIVATE ROOM. If you don't have a

private room, the nurses likely will NOT let caregivers stay all

night in the room. But even worse, you could be in a room with

someone screaming and moaning...or like happened to me, some guy with

a steady stream of visitors all day long. For whatever unknown

reason, hospitals are HORRIBLE places to sleep at night. The nurses

are continually coming around to check this and that, blood draws at

3am, etc. and it is damn near impossible to get any decent sleep.

Oddly enough, often the best " quality sleep time " is in the DAY!!!

If you have to listen to the loudmouth relatives of your roomie

during that time, you ain't gonna sleep day OR night!!!

Best Wishes,

>

> Betty,

> Sorry I did not respond sooner, but I received your message at work

and my information was at home. When we saw our doctor to schedule

the appointment, he gave us a packet of information. It included

places to stay. When my dad was a patient at the several years

ago my mom stayed in his room with him. It wasn't the most

comfortable bed, but it worked for her. When my husband was at

Riverside I stayed with him some nights because I wanted to make sure

things were being done correctly for him. We caught several errors

the nurses were about to make. YIKES!! In case you do not receive the

packet, the places to stay are: University Plaza Hotel $55 single $65

double, Fawcett Center for Tomorrow $79, Cross Country Inn North

$38.25, Cross Country Inn South $42.75, Holiday Inn on the Lane $65,

Super 8 Motel $45 & $49, Days Inn $36, Red Roof Inn $49.49 & $53.99,

and Fairfield In by Marriott $69. There is a shuttle that goes

between the hospital and these hotels. The shuttle runs Monday-Friday

7:00am - 9:00pm. I cannot recommend any of them because I stay with

my cousins who live close to the hospital, therefore I have never

stayed in any of these hotels. They do charge to park there, however,

they offer reduced rates parking passes which can be purchased at the

Park and Ride desk in the Hall lobby. A 7 day pass is $21. The

first pass must be purchased for a minimum of 5 days and additional

passes can be purchased for $3 per day. My husband's doctor is E.

Ellison. He is the chief of surgery there. If I can

answer any other questions for you, please let me know. My dad was

treated at the 7 years ago for bladder cancer and he is still

doing very well today. I will let you know more about our experience

after we come back.

>

> Best of luck to you my friend,

> Donna M.

[Guest guest]

Donna, just like to confirm what you are saying. I have had someone

staying with me all night following all of my surgeries...I was very

happy that they were there. The " night shifts " in hospitals may be

understaffed....there can be a couple " crises " going on at once and

nobody comes to your room after you push the button. You never know

what is going to happen. When several days have passed and you start

to feel stronger, its not as important, but to have someone there all

night for at least the first night or two is really not a bad idea.

One more thing - be SURE you get a PRIVATE ROOM. If you don't have a

private room, the nurses likely will NOT let caregivers stay all

night in the room. But even worse, you could be in a room with

someone screaming and moaning...or like happened to me, some guy with

a steady stream of visitors all day long. For whatever unknown

reason, hospitals are HORRIBLE places to sleep at night. The nurses

are continually coming around to check this and that, blood draws at

3am, etc. and it is damn near impossible to get any decent sleep.

Oddly enough, often the best " quality sleep time " is in the DAY!!!

If you have to listen to the loudmouth relatives of your roomie

during that time, you ain't gonna sleep day OR night!!!

Best Wishes,

>

> Betty,

> Sorry I did not respond sooner, but I received your message at work

and my information was at home. When we saw our doctor to schedule

the appointment, he gave us a packet of information. It included

places to stay. When my dad was a patient at the several years

ago my mom stayed in his room with him. It wasn't the most

comfortable bed, but it worked for her. When my husband was at

Riverside I stayed with him some nights because I wanted to make sure

things were being done correctly for him. We caught several errors

the nurses were about to make. YIKES!! In case you do not receive the

packet, the places to stay are: University Plaza Hotel $55 single $65

double, Fawcett Center for Tomorrow $79, Cross Country Inn North

$38.25, Cross Country Inn South $42.75, Holiday Inn on the Lane $65,

Super 8 Motel $45 & $49, Days Inn $36, Red Roof Inn $49.49 & $53.99,

and Fairfield In by Marriott $69. There is a shuttle that goes

between the hospital and these hotels. The shuttle runs Monday-Friday

7:00am - 9:00pm. I cannot recommend any of them because I stay with

my cousins who live close to the hospital, therefore I have never

stayed in any of these hotels. They do charge to park there, however,

they offer reduced rates parking passes which can be purchased at the

Park and Ride desk in the Hall lobby. A 7 day pass is $21. The

first pass must be purchased for a minimum of 5 days and additional

passes can be purchased for $3 per day. My husband's doctor is E.

Ellison. He is the chief of surgery there. If I can

answer any other questions for you, please let me know. My dad was

treated at the 7 years ago for bladder cancer and he is still

doing very well today. I will let you know more about our experience

after we come back.

>

> Best of luck to you my friend,

> Donna M.

[Guest guest]

Hi ;

> Your husband is VERY lucky that treatment has worked so well and he

> is in the fortunate " 6-8%

--- thanks, we feel God is watching over us, even tho this is a

painful way to go. (stresswise as well)

Can you 'plain to me, why are the lymph nodes part of the problem

(and, in unknown issues, if they can be removed, what then, does the

body do to replace what was there to funcion??

> That is roughly my GUESS as to how a doctor would answer, but be

sure

> you ask one!!!

You got it friend, if Bob does the 3-4 cycles of chemo, (on 4 weeks,

off 2) he won't use up 6 months, but hear what you say too. Nothing

is as sure as this " when the dice are rolled " shoot game! ( " until

they open him up " )This chemo treatment is perhaps, killing the cancer

cells in the nodes too? (And wouldn't be needed later for that after

surgery, even for a period of time??)

Heard of a new term from Kathy O concerning SS disability benefits.

The mets are classified as " illness until death " there, really

scary..... Love you take all the interest and time you do with us and

show you care we get as much knowledge as possible, with your

research and input, Thanks (TONS) again, Betty B.

[Guest guest]

Hi ;

> Your husband is VERY lucky that treatment has worked so well and he

> is in the fortunate " 6-8%

--- thanks, we feel God is watching over us, even tho this is a

painful way to go. (stresswise as well)

Can you 'plain to me, why are the lymph nodes part of the problem

(and, in unknown issues, if they can be removed, what then, does the

body do to replace what was there to funcion??

> That is roughly my GUESS as to how a doctor would answer, but be

sure

> you ask one!!!

You got it friend, if Bob does the 3-4 cycles of chemo, (on 4 weeks,

off 2) he won't use up 6 months, but hear what you say too. Nothing

is as sure as this " when the dice are rolled " shoot game! ( " until

they open him up " )This chemo treatment is perhaps, killing the cancer

cells in the nodes too? (And wouldn't be needed later for that after

surgery, even for a period of time??)

Heard of a new term from Kathy O concerning SS disability benefits.

The mets are classified as " illness until death " there, really

scary..... Love you take all the interest and time you do with us and

show you care we get as much knowledge as possible, with your

research and input, Thanks (TONS) again, Betty B.

[Guest guest]

<<if Bob does the 3-4 cycles of chemo, (on 4 weeks, off 2) he won't

use up 6 months>>

You know, the more I think about this it seems somewhat strange that

they wouldn't do at least the SAME chemo timing, etc. as they would

for a stage III. Now can you remind me of your husbands situation

again...has he had surgery to remove the primary yet? If so, they

already know if cancer is/is not in nodes, if not, they cannot say

(scans cannot be used to determine nodal status).

<<why are the lymph nodes part of the problem (and, in unknown

issues, if they can be removed, what then, does the body do to

replace what was there to funcion??>>

Cancer spreads from the primary in (one or more) of 3 ways:

hematologic (in the blood), lymphatic (in the lymph system), or

by " direct extension " (tumor breaks thru colon & spreads by direct

contact). Direct extension is the " best " type of spread because the

cancer is still considered " localized " & therefore still potentially

curable. I sure hope that is what your husband has!!!! Lymphatic or

hematologic spread is " worse " , because then the chances are high that

there are other hidden mets/micromets besides the obvious seen on

scans or during surgery. They remove a number of nodes near the

primary during the colon surgery, but the abdomen has a HUGE number

of nodes relative to other parts of the body so I think you don't

notice much in terms of functionality

http://www.deeptissue.com/learn/systems/lymph/ldrain.htm

HOWEVER, when they remove nodes for other cancers such as breast it

CAN actually cause problems but I have never heard of this for CC

http://oesi.nci.nih.gov/aboutbc/treatment-lymph.html

If the cancer escapes beyond the nodes around the primary tumor, it

could basically be ANYWHERE in the lymph system between the primary

and where it was found...they can't cut out the entire lymph system

(!) so that is why the surgeons SAY no use to bother with surgery

once cancer is detected in distant nodes (although it seems to me it

won't hurt/might help to remove any disease seen on scans, even if in

nodes).

In THEORY systemic chemo should be able to " kill " cancer cells

anywhere...but in PRACTICE its ability to do this enough to CURE the

patient appears limited to stage III and maybe a small percentage of

stage IV's. Basically, it would appear if cancer spread is beyond

the nodes right around the primary and/or the liver, chemo somehow

for most cases does not seem able to kill EVERY last cancer cell in

the body & therefore cure the patient (even if it can sometimes

shrink tumors on scans).

That being as it may...have you thought about getting a second

opinion on chemo for your husband? Because chemo has worked so well

for him, it would be a real shame to reduce the likelihood of its

helping achieve a cure along with the other things he's doing by

leaving off an extra month or two. I wonder what Sugarbaker would say

about this...

Best,

[Guest guest]

<<if Bob does the 3-4 cycles of chemo, (on 4 weeks, off 2) he won't

use up 6 months>>

You know, the more I think about this it seems somewhat strange that

they wouldn't do at least the SAME chemo timing, etc. as they would

for a stage III. Now can you remind me of your husbands situation

again...has he had surgery to remove the primary yet? If so, they

already know if cancer is/is not in nodes, if not, they cannot say

(scans cannot be used to determine nodal status).

<<why are the lymph nodes part of the problem (and, in unknown

issues, if they can be removed, what then, does the body do to

replace what was there to funcion??>>

Cancer spreads from the primary in (one or more) of 3 ways:

hematologic (in the blood), lymphatic (in the lymph system), or

by " direct extension " (tumor breaks thru colon & spreads by direct

contact). Direct extension is the " best " type of spread because the

cancer is still considered " localized " & therefore still potentially

curable. I sure hope that is what your husband has!!!! Lymphatic or

hematologic spread is " worse " , because then the chances are high that

there are other hidden mets/micromets besides the obvious seen on

scans or during surgery. They remove a number of nodes near the

primary during the colon surgery, but the abdomen has a HUGE number

of nodes relative to other parts of the body so I think you don't

notice much in terms of functionality

http://www.deeptissue.com/learn/systems/lymph/ldrain.htm

HOWEVER, when they remove nodes for other cancers such as breast it

CAN actually cause problems but I have never heard of this for CC

http://oesi.nci.nih.gov/aboutbc/treatment-lymph.html

If the cancer escapes beyond the nodes around the primary tumor, it

could basically be ANYWHERE in the lymph system between the primary

and where it was found...they can't cut out the entire lymph system

(!) so that is why the surgeons SAY no use to bother with surgery

once cancer is detected in distant nodes (although it seems to me it

won't hurt/might help to remove any disease seen on scans, even if in

nodes).

In THEORY systemic chemo should be able to " kill " cancer cells

anywhere...but in PRACTICE its ability to do this enough to CURE the

patient appears limited to stage III and maybe a small percentage of

stage IV's. Basically, it would appear if cancer spread is beyond

the nodes right around the primary and/or the liver, chemo somehow

for most cases does not seem able to kill EVERY last cancer cell in

the body & therefore cure the patient (even if it can sometimes

shrink tumors on scans).

That being as it may...have you thought about getting a second

opinion on chemo for your husband? Because chemo has worked so well

for him, it would be a real shame to reduce the likelihood of its

helping achieve a cure along with the other things he's doing by

leaving off an extra month or two. I wonder what Sugarbaker would say

about this...

Best,

[Guest guest]

> Hi Betty,

> I'm wondering if your husband might have a cementoma.

--- I tried to get him to go to the dentist at the start of all of

this, and he said wait. He didn't want further poking and or whatever.

Will let you know when (later) we find out.

Thanks for the informaiton.

Always the Best, Betty B.

[Guest guest]

" Kathy " <oconnor@b...> wrote:

> Hi Betty,

> Mets to lungs, etc. The day of the

> event, she had just had her 158th chemo treatment! Yes, that's

> 158. She has been on chemo pretty much constantly for almost five

> years!

----- Far better than getting ill and some of the other major

debilatating occurances I would guess (but maybe not too, some of the

effects are pretty rough. Have heard many people hosp. for infection

and dies as result of chemo treatment) It is good to hear this tho,

for knowing some had that many treatments and still have it in

remission..... might let him know of your news in a bit. Enough bad

news lately, want to see how he does on this again.

Thanks for the info, Betty B.

ps. Has anyone ever tried that

Noni juice? My neice started selling it, saying it helped her

headaches considerably. (and long list of things it " helps "

http://noniinfo.8k.com/ yet it is also in quackwatch (multi level

marketing)however too, it is listed at

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=PubMed & list_uids=11795436 & dopt=Abstract so just

wondering if anyone has tried it and did they feel better??

[Guest guest]

i wish to unsubscribe as of today

thank you

[Guest guest]

Well, this guy basically says you can do whatever you

want...from " nothing " to mega tox Camptosar/Oxaliplatin/5-FU combo

(shudder!). In the past, he has admitted he has no idea what

is " best " (which is at least honest. Unfortunately, the oncs who

CLAIM to know the " best " are usually blowing smoke lol!).

Given " palliative " course, I lean heavily towards the quality of life

direction...minimal chemo (such as Xeloda) which is likely to be

tolerable w/ few side effects.

Kinda curious just to hear his comments about the current situation,

now that surgery is out of the question. Have not really had a

chance to discuss with him since being booted out the surgeon's door!

Best,

> ---This is to ,,,,,,, (not meaning fighting what they offer is

> bad, just that this doctor better be able to reduce it to writing

to

> prove what he offers to you, as we know you aren't going to " yes

sir "

> him like over 90% of his patients do for sure)

> > So now you wait a bit more, monday will come fast. You are not

only

> > an informed customer of your doc, you might just be a bit

> > antagonistic and try to fight what he might offer?? Hummm, think

> > meeting you for him must have been a good thing too. Trust you

will

> > listen and then jump in, really hard to do when you know that

life

> > depends on it and trail and error might not be the best way to

hit

> on

> > this. HOWEVER< we know that is what they are doing in many of the

> > instances anyway!!

> > Best possible choices to you, as Always, Betty B.

> >