Re: Lyphedema Questions/Shaleen

[Guest guest]

In a message dated 11/1/2005 2:59:21 PM Eastern Standard Time,

shaleenesq@... writes:

Hello All!

I have been reading many your posts for a while now and they have

been helpful and supportive in dealing with this horrific disease.

What a wonderful community this group is! I am now in need of some

specific help and I hope someone out there can provide me with some

guidance.

My mom Sharon, who is 62, was diagnosed with Stage IV Colon Cancer

on 5/24/05. Her colon cancer tumors have spread to her entire pelvic

area (ovaries and uterus) and some lymnodes. She originally had 19

radiation treatments coupled with a small amount of chemo. She has

just completed her 4th straight chemo treatment (she gets 48 hours

continuous every 2 weeks.) Her treatment protocal is for 12 total

treatments. After the 3rd treatment she developed what I learned

(because the doctors didn't identify it right away) was lymphedema

because her tumors are pressing on her lymph nodes. This made her

legs swell like tree trunks and very painful and

constantly " weeping " . She was given antibiotics and put into

compression hose. That seemed to work, at first, but now the liquid

that was in her legs is settling up in her belly. She looks like she

is having twins (She tries to keep her sense of humor about it). She

is losing about 450 ml a day of fluid from her leg (where it is

draining) but her belly is still really large and hard in some

areas. She is so very uncomfortable and cannot do anything for more

than 15 minutes (standing, sitting, laying down) because the

pressure is so uncomfortable for her. She has a lot of trouble

urinating because of the pressure of everything on her bladder.

Her doctor said she will now always have this belly and that there

is nothing really they can do for her...I just can't believe that!

So I'm hoping (really not, because this is such an awful thing to go

through) that someone has had this experience and may have some

words of wisdom, comfort, whatever for me.

I lost my father to kidney cancer 5 years ago and now this...it's

really hard for me to face that I will loose my mother now sooner

rather than later. I try to remain positive but it is hard. I,

along with my wonderful husband, are her caregivers and I want to

make sure that we are doing all that we can for her. Any advice is

appreciated.

God Bless you all!

:)Shaleen

Hi Shaleen...welcome to our " family " ...I'm so very sorry you've lost your

Dad and now having to go through this pain and suffering with your Mom....how

heartbreaking!! Tis a cruel disease we are all dealing with!!

I'm Donelle and caregiver to Glenn...I don't know if this will be of any

help to you or not, but I'm throwing it out for you to check on it... Glenn

has

Stage IV Colon Cancer with 3 of 22 lymph nodes involved. He had colon

resection 2 yrs. ago and 8 months of chemo, during which time he did very

well...working most of the time.

Then mets to the liver were found with a clot of some kind in the portal

vein going in to the liver, causing a fluid build up in his abdomen, which was

very painful like what your Mom is experiencing. At first they said when

chemo is started, the Ascites will slow down or stop...didn't happen. (At that

time they didn't know about the clot, so they were " guessing " ). The fluid

build up, called Ascites, put pressure on every organ in his body causing

almost pain. He had a procedure called Paracentesis done for months...started

out

every 2 wks., then went to every 9 or 10 days and then for several months,

it was done weekly. It was a procedure done at the hospital where they

inserted a rather large needle and the fluid drained out into jars, a liter at

a

time. The highest amount drained in a week time period was 11 liters...and he

holds the hospital record....big yip, right?? LOL

This procedure was only painful for a few seconds when they inserted the

needle after numbing the area...tummy linings have tons of nerve endings, so it

still hurt a little. But the relief was well worth the little sharp pain.

They eventually checked the Ascites fluid to see if it was cancerous and it

was not...thank God for all small favors!!!

It appears your Mom's fluid build up is somewhat different or maybe caused

by something different, but you might want to ask about the Paracentesis

procedure and if it can be done for her or if not, WHY NOT?? Do a Google

search

for Ascites and then Paracentesis and maybe there will be more info in there

that might relate to your Mom's condition.

Aug. 29th Glenn, after many months of this procedure, had a pump inserted

under the skin with a tube down in to the abdomen and another tube up in to the

jugular vein, which now takes the fluid from the abdomen to the vein and out

through the body in a normal process, but bypassing the liver

altogether...it's amazing some of the procedures that are out there you would

never have

heard of if it weren't for CANCER!!! I hate that word, as everyone here

knows...The weekly drainings eventually were taking their toll on Glenn's body

and

he was losing all nutrients as they drained him weekly; thus the pump

attempt, which was a success. Of course, we got one thing " fixed " and

something

else has gone wrong, but that's been Glenn's experience for the last 2

yrs...one

thing after another after another. And that's a whole other story...LOL

Try to stay positive, Shaleen...God bless you and your husband for going

through this at your Mom's side. Prayers ascending nightly for you, your hubby

and your Mom!!

Lots of hugs and prayers, Donelle

Caregiver to Glenn

[Guest guest]

Thank you for sharing this with me Donelle...I'm so sorry to hear

all that Glenn (and you) have gone through. I am printing your

posting so that I can share with my mom's doctor. Although she does

have the lymphedema, who knows what else could be happening in her

body. She asked the doctor the other day if he was ready to " write

up " her case for a study/paper, and he replied that he's really

close since she is not " presenting normally " ...maybe that's the

reason for her to go through all of this...maybe some new treatment,

some new take on this disease or whatever will be discovered...gotta

justify this experience somehow.

God Bless you!

:)Shaleen

>

>

> In a message dated 11/1/2005 2:59:21 PM Eastern Standard Time,

> shaleenesq@y... writes:

>

> Hello All!

> I have been reading many your posts for a while now and they have

> been helpful and supportive in dealing with this horrific

disease.

> What a wonderful community this group is! I am now in need of

some

> specific help and I hope someone out there can provide me with

some

> guidance.

> My mom Sharon, who is 62, was diagnosed with Stage IV Colon

Cancer

> on 5/24/05. Her colon cancer tumors have spread to her entire

pelvic

> area (ovaries and uterus) and some lymnodes. She originally had

19

> radiation treatments coupled with a small amount of chemo. She

has

> just completed her 4th straight chemo treatment (she gets 48

hours

> continuous every 2 weeks.) Her treatment protocal is for 12 total

> treatments. After the 3rd treatment she developed what I learned

> (because the doctors didn't identify it right away) was

lymphedema

> because her tumors are pressing on her lymph nodes. This made

her

> legs swell like tree trunks and very painful and

> constantly " weeping " . She was given antibiotics and put into

> compression hose. That seemed to work, at first, but now the

liquid

> that was in her legs is settling up in her belly. She looks like

she

> is having twins (She tries to keep her sense of humor about it).

She

> is losing about 450 ml a day of fluid from her leg (where it is

> draining) but her belly is still really large and hard in some

> areas. She is so very uncomfortable and cannot do anything for

more

> than 15 minutes (standing, sitting, laying down) because the

> pressure is so uncomfortable for her. She has a lot of trouble

> urinating because of the pressure of everything on her bladder.

> Her doctor said she will now always have this belly and that

there

> is nothing really they can do for her...I just can't believe

that!

> So I'm hoping (really not, because this is such an awful thing to

go

> through) that someone has had this experience and may have some

> words of wisdom, comfort, whatever for me.

> I lost my father to kidney cancer 5 years ago and now this...it's

> really hard for me to face that I will loose my mother now sooner

> rather than later. I try to remain positive but it is hard. I,

> along with my wonderful husband, are her caregivers and I want to

> make sure that we are doing all that we can for her. Any advice

is

> appreciated.

> God Bless you all!

> :)Shaleen

>

>

>

> Hi Shaleen...welcome to our " family " ...I'm so very sorry you've

lost your

> Dad and now having to go through this pain and suffering with

your Mom....how

> heartbreaking!! Tis a cruel disease we are all dealing with!!

>

> I'm Donelle and caregiver to Glenn...I don't know if this will be

of any

> help to you or not, but I'm throwing it out for you to check on

it... Glenn has

> Stage IV Colon Cancer with 3 of 22 lymph nodes involved. He had

colon

> resection 2 yrs. ago and 8 months of chemo, during which time he

did very

> well...working most of the time.

>

> Then mets to the liver were found with a clot of some kind in the

portal

> vein going in to the liver, causing a fluid build up in his

abdomen, which was

> very painful like what your Mom is experiencing. At first they

said when

> chemo is started, the Ascites will slow down or stop...didn't

happen. (At that

> time they didn't know about the clot, so they

were " guessing " ). The fluid

> build up, called Ascites, put pressure on every organ in his body

causing

> almost pain. He had a procedure called Paracentesis done for

months...started out

> every 2 wks., then went to every 9 or 10 days and then for

several months,

> it was done weekly. It was a procedure done at the hospital

where they

> inserted a rather large needle and the fluid drained out into

jars, a liter at a

> time. The highest amount drained in a week time period was 11

liters...and he

> holds the hospital record....big yip, right?? LOL

> This procedure was only painful for a few seconds when they

inserted the

> needle after numbing the area...tummy linings have tons of nerve

endings, so it

> still hurt a little. But the relief was well worth the little

sharp pain.

> They eventually checked the Ascites fluid to see if it was

cancerous and it

> was not...thank God for all small favors!!!

>

> It appears your Mom's fluid build up is somewhat different or

maybe caused

> by something different, but you might want to ask about the

Paracentesis

> procedure and if it can be done for her or if not, WHY NOT?? Do a

Google search

> for Ascites and then Paracentesis and maybe there will be more

info in there

> that might relate to your Mom's condition.

>

> Aug. 29th Glenn, after many months of this procedure, had a pump

inserted

> under the skin with a tube down in to the abdomen and another tube

up in to the

> jugular vein, which now takes the fluid from the abdomen to the

vein and out

> through the body in a normal process, but bypassing the liver

> altogether...it's amazing some of the procedures that are out

there you would never have

> heard of if it weren't for CANCER!!! I hate that word, as

everyone here

> knows...The weekly drainings eventually were taking their toll on

Glenn's body and

> he was losing all nutrients as they drained him weekly; thus the

pump

> attempt, which was a success. Of course, we got one

thing " fixed " and something

> else has gone wrong, but that's been Glenn's experience for the

last 2 yrs...one

> thing after another after another. And that's a whole other

story...LOL

>

> Try to stay positive, Shaleen...God bless you and your husband

for going

> through this at your Mom's side. Prayers ascending nightly for

you, your hubby

> and your Mom!!

>

> Lots of hugs and prayers, Donelle

> Caregiver to Glenn

>

>

>

[Guest guest]

In a message dated 11/2/2005 2:20:16 PM Eastern Standard Time,

shaleenesq@... writes:

maybe that's the reason for her to go through all of this...maybe some new

treatment, some new take on this disease or whatever will be

discovered...gotta

justify this experience somehow.

God Bless you!

:)Shaleen

Keep thinking positive, Shaleen!!! Let's all hope so, but hate that your

Mom has to suffer so.

Lots of hugs and prayers, Donelle

Caregiver to Glenn