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Re: Lyphedema Questions

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Thank you Ingrid...I've gotten so much out of reading posts in the

past and hopefully someone will have some experience with this.

> >

> > 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

> >

>

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Thank you for the info Deb. I have discovered that radiation therapy

is a big factor in causing lymphedema. Thankfully no, my mom won't

be doing any more radiation...her doctors determined after 19

sessions that her body could no longer handle it without causing

more damage to her small intestine due to the position/location of

the tumors. Unfortunatley, due to the volume, size etc. of her

tumors, she is not a candidate for surgery (I hate the

term " inoperable " , sounds so final) So, now its up to the chemo to

get rid of those blasted things. She has had an ok time with it

thus far...thankfully no nausea, no hair loss, however she does have

neuropathy in her hands and lots of fatigue. The fatigue is

probably the biggest problem for her to get used to. My mom was

EXTREMELY active and independent and now she can barely get dressed

in the morning let alone " run around " like she used to. She's

having a tough time realizing that she can't " do it all " like she

used to...nothing worse than fighting your own body.

Thank you for your prayers and know that you all are in mine and

have been for a while.

:)

> 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

>

> __________________________________________________

>

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Oh , thank you so much for posting. It's so good to get

connected with someone who has experience with this. My mom has not

had any surgery, so my guess is that her problems developed because

of the radiation. I will speak with her doctor specifically about

prescribing it. I try to massage my mom's legs with lotion

everynight because I can see how bumpy, red and painful they have

gotten for her.

Sending you " good results " thoughts your way today...thanks again!

:)

>

> I hesitated to jump in here on this because I will be gone

tomorrow for my 4 month cancer checkup....yikes:(...and may not be

able to check my email until Thursday...

>

> But I have lymphedema, first from the removal of lymph nodes in my

pelvic area due to uterine cancer, second the damage done to the

remaining nodes from the radiation, and then, as if that were not

enough, I lost more nodes when parts of my small bowel and colon

were removed!!!

>

> I have had wonderful results from physical therapy massage. have

your mother ask her doctor about prescribing it.

>

> nancy j

> ----------

>

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date:

10/28/2005

>

>

>

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Hi . I'm here in California as well, Sacramento to be exact

and my mom has been receiving her treatment up in Chico. Yeah, I

thought that some draining need to be done. By coincedence (or by

divine intervention) my mom took a fall a couple of weeks ago and

cut her leg (shin), but rather than it bleeding, only fluid came out

so that is where she is draining from now and you are right, she had

instant relief from the pressure (at least originally). She now has

a bag on her leg and her ostomy bag on her belly and has deemed

herself " the original bag lady " (Its amazing how she can keep her

sense of humor through all of this). Her doctor had mention

something about not being able to drain from the belly, I think

there is a concern for a chance of infection, but I do want to see

if there is something else that can be done like stretching

exercises or something.

My goodness..what you have been through?! It amazing to see how

much " stuff " our bodies produce and how we are all able to function

on a daily basis, just amazing.

Take care and thank you for your post.

:) Shaleen

>

>

> Shaleen:

> It sounds like her abdomen needs to be drained. I have met 2

patients with

> these symptoms, one of whom has primary ovarian cancer. She

looks like she

> is nine months pregnant. She is going to an interventional

radiologist here

> at St. 's Hospital in Santa and has catheters that

drain the

> ascites (name of fluid) from her.

> I have stage 4 colon cancer and had this when I was trying to

recover from

> the surgery on my colon, liver, etc. I have fluid drained from my

abdomen and

> lungs. Each time they went into my lungs, as many as 4 liters of

fluid came

> out. Eventually they put a catheter into my liver area and I had

a bag on

> the outside that had to be drained and measured daily. This

lasted for 2 or 3

> months (my chemo brain at work).

> It is not acceptable to say they can do nothing. I am no expert

on this and

> I am sure you will find others with more experience. However,

your story

> reminds me so much of this lady who is at my oncologist's office

and the

> draining has given her such relief. She was ready to give up

until that happened.

> Prayers for you and mom,

> in California

>

>

>

> In a message dated 11/1/2005 11:59:21 AM Pacific 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

>

>

>

>

>

>

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This must be the reason they won't drain her at this point. Her skin

is so dry, so I'm making sure to keep her lotioned up so she won't

have anything happen (scrapes, cuts, etc..) We are in the process

of moving and she really wants to help my husband and I, but I keep

telling her I don't want her to risk getting hurt. Yet another

thing that frustrates her, not being able to help.

:)Shaleen

>

> If it is lymphedema, it cannot be drained. It is in the lymph

channel system and has to be trained to learn to move through new

channels.

>

> For instance, my pelvic lymph nodes are so damaged and or missing,

that I am to never have injections of any kind below the waist. My

lymph system could never handle dispersing the medication into my

system.

>

> You have to be very careful to avoid insect bites, nicks from

shaving, etc below the waist....in order to avoid infections. Your

lymph system cannot flush out the toxins and poisons like it used to.

>

> I never knew just how important the lymphatic system was until

this happened to me.

>

> nancy j

> ----------

>

> No virus found in this outgoing message.

> Checked by AVG Anti-Virus.

> Version: 7.0.344 / Virus Database: 267.12.6/151 - Release Date:

10/28/2005

>

>

>

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