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anyone with lymphedema?

Posts: 292
Joined: Oct 2000

Hi again ladies, Tiger here again, do any of you who have had mastectomies ever get lymphedema? I noticed today that the fleshy part by my armpit is swollen and my arm and hand are really aching. I did not have it since my surgery,but since this last dose of Taxol it is bugging me today. Apparently the drs say there is nothing that can be done about this, but do you have any home remedies that work? Oh yeah, kind of personal, but any good remedies for constipation? I find for the first few days after chemo I cannot go, then I get pains in my belly and I go, I am eating yougurt, fresh fruits, whole grain bread, and shreddies,but today I was literally writing in pain on the bed because I had to go so bad and could not, my husband wanted to take me to emergency, but what do i say? Yeah, i am in pain because i need a good dump? I even tried drinking a glass of warm water to get the ball rolling, it worked a little, but i honestly thought someone was slicing me open with a serrated knife and i was hoping to pass out. Any info on either subjects would be greatly appreciated. Thanks, Tiger xoxox

Posts: 292
Joined: Oct 2000

Hey guys, thanks for the advice, Ellen, I laughed when I first read your reply, I started reading about the metamucil and thought to myself, now why would that help lymphedema? Then through my percocet haze i realized you were referring to the constipation problem, needless to say i had a much needed little giggle over that. Thanks, love from Tiger xo

Posts: 1
Joined: Nov 2000

reply to lymphedema. i have extreme swelling of the hand and arm and underarm and boy is it painful. i went to a naturopath because my doctors said there wasn't anything they could really do. i now take lymphdiaral by a company called pascoe in germany. you can get it through a health store or naturopath. its drops you put in water and i take it every couple of hours and drink lots of water along with it. it does bring the swelling down somewhat. also make sure that you exercise that arm, such as rotating it stretching etc. walking will help cause it makes the muscles work which in turn makes the lymphatic system work. try it good luck

Posts: 30
Joined: Sep 2000

Hi Tiger. Jackie here, replying about constipation -- been there, done that numerous times. (let's face it ladies, in a group like ours, there's no subject that remains sacred for very long!) I get "plugged" after every single course of chemo. My Dr. says these drugs all slow down our systems. That's why most of us end up gaining weight. They told me to use milk of magnesia as often as I need to. It seems to do the trick, and doesn't give me nasty cramps. As for lymphedema, you should definitely talk to your Dr. about it. Maybe you could be fitted for one of those stretchy sleeves that helps to stimulate circulation. There are also some exercises that are supposed to be helpful. Good luck with your last Taxol. I can definitely empathize with your reluctance to put your body thru it again. But, you're a pro at it by now! Won't it be great to leave that chemo clinic knowing it's your last time? You go girl!

pamtriggs's picture
Posts: 407
Joined: Sep 2000

Dear Tiger
Sorry I can't help with the lymphodema as I had no problems following a total mastectomy 19 years ago but maybe I can with the other personal problem. I am strongly into natural remedies and if I am constipated I take Natures Way brand licorice capsules for a few days. Natural & gentle on the system but so effective. Another thing to try is Natures Way Psyillium husks in capsule form before you have your treatment, This prevents the constipation from starting.

I love your sense of humor and often have a smile on my face when I read your messages. Good luck & I hope by now you have managed a good clean out.
Love & hugs

Posts: 109
Joined: Dec 2000

I'm new - and this is my second message tonight. Yes there is something that can be done for lymphedemia. Don't take no for an answer. There is a web site - www.lymphnet.org I have been getting manual massages and it has helped quite a bit.
Good Luck

Posts: 292
Joined: Oct 2000

Hi Deb, thanks for that adress, I do notice that when my arm gets sore or swelling starts, I get my husband to massage the upper arm and chest area and it goes away, something to do with promoting the flow of lymph.

Posts: 165
Joined: Dec 2000

Hi Deb,
I know what you mean. I fired my first surgeon at the post-surgery visit
for refusing to follow accepted guidelines by dealing with bilateral masectomy
patients (ie wanted to do blood pressure on arm, and told me "your veinss
are fine, you don't need a port"
The girls at the hospital lab have been great with me, they even make certain
that my blood draws are on days and times when a nurse who can use
my new port can do the work.
I have provided numerous nurses with their first ever blook pressures
in the leg.
I had my worst bout after my bone scan when I had the big velcro band
smacked around my arms and body. It wasn't tight but it was tight enough
to reduce the lymph flow. It took an entire day of hourly deltoid redirection
to get the swelling down.
I never take no for an answer.

Posts: 3
Joined: Aug 2003

this is my firsttime in this. I thought there would be active chat.Guess not but still i need info I have several hard bumps in my arm and it is quite difficult to lift or stretch, my doctor has suggested manual drainage, but my ins. co. won't let me. have any suggs. please respond i really need help with this and a couple other things. thanks

Posts: 45
Joined: Jan 2001

Did I ever! it started with surgery and hasn`t slowed up. i had to go to be aspirated every2-4 days after surgery. the surgeon told me it would gradually decrease off to nothing. well, that was almost right. the surviving part of my axillary still swells til i can`t either wear a bra at all, or i can put it on but not pull up the strap on the affected side. i went thru 3 styles of bra trying in vain to find something tolerable enough to wear in public. to boot, edema started to flare up in my legs making my ankles look like they belonged somewhere else. the associated pain/discomfort made me wish they were somewhere else! i will be cautiously trying a diuretic(fluid) pill to see if it helps before i explode!
my best wishes on this one and let me know if you come up with anything.

Posts: 165
Joined: Dec 2000

Dear britchick,
I hope you realize how difficult it is for some of us to say that posting name without
making big boo-boos.
I am having some difficulty now but nothing like yours. Both my arms are compromised
since I had a bilateral (bunches of tumors in each little boobie so I don't have to
worry about the bra thing. But they put in a mediport which is a bit infected and sore
and really limited my motion on the right...it is already beginning to cause more swelling
in my upper arm. and I get so tired of answering the question but is it more than
half an inch larger than your unaffected arm since I start the discussion with the statement
that I had a bilateral. These are supposed to be medically knowledgable people
and they just manage to raise my blood pressure.

Keep in touch. We love having you here. Will pass on anything I find out.

Posts: 292
Joined: Oct 2000

Medically knowledgable people? Ha, now there is a good one!!!! Some of the people in the medical field ought to be shot right between the lookers for some of the things they say and do. But then again, there are some out there who are wonderful. As for the lymphedema, I started doing Richard Simmons Sweatin to the oldies , and Tae Bo on alternate days, and I have not had anymore swelling in my arm, I can actually wear a bra again too!!! I am one year past surgery,so I am all healed up and able to do these exercises, it depends where you are at. Forgive me for not remembering details, but chemo brain has made me so duh, dumb right now. I cant even remember how to spell, this is the worst I have had it. I have some tentative results from my onco nurse, but I want to speak to him and get the full skinny before I go flapping off at the mouth, Wednesday night when I get back I will post. Have any of you ever taken Paxcil, it is an antidepressant. I am trying to wean myself off of it now, for awhile I was really moody and depressed, the paxcil helped, but since starting it I cannot (please forgive me if I embarrass anyone) have the BIG O , if you know what I mean. And frankly, right now I am climbing the walls!!! A good roll in the hay really lifts my spirits and makes me sleep well!!!
I cannot wait until the new format is up and running, hopefully it will make it easier to find the newest postings. I just wish there was a way that we could find out how someone is doing if they have not posted in awhile, still no news of Jackie or Pat, Frustrating as hell...
Well ladies, I shall cease the rambling, it has been a few days since I last checked in so I will continue on to read the rest of the postings.
Hugs and love from Rosa. (Tiger)

Posts: 165
Joined: Dec 2000

Hey tiger,
just be glad you aren't a guy on paxil...one of their frequent side-effects in the ability to get
it up without any way to get it back down. I know many guys who had to change drugs
it was so bad. Thankfully they are developing newer better things for depression all the time.
(don't worry about spelling, I have corrected so many typos in this little paragraph that
I spend more time backing than typing.

By the way a much smaller dose of any antidepressant may work for you. they prescribe them
based on studies with equal numbers of men and women or heavily weighted toward men, and
women seem to move the SSRI type drugs out of their systems more slowly so you end up with
a overdose condition even though you are taking what you were supposed to.

It happens to me on Zoloft all the time...My docotr says I can feel it happening, so back off to
a lower level when I need to and use the max dose only when I need that.

Remember because of slower times for getting the paxil out of your body it may take longer
than the docotr says.

hugs, cher

mjdp2's picture
Posts: 142
Joined: Nov 2000

Hi, I wasted lots of money buying new bras after surgery. The incision area where the drain tube was inserted is still very sensitive. I found that spending a few bucks on bra extenders at the fabric store was better than buying larger sized bras. I also wear camisoles now instead of bras whenever I can, but I don't have much to support anymore. The radiation made my boobie much firmer. My surgeon said I would feel the way I did when I was a teen and he was right!! Margaret

pamtriggs's picture
Posts: 407
Joined: Sep 2000

Dear Britchick (what is your first name?) I presume you are from Britain - I was too originally B4 I emigrated to New Zealand 30+ years ago. Where in Britain did (do you live?) As for the bras I have one I used after radiation when I was very sore. It's made by a company called AMOENA who make prostheses and bras for mastectomy. It is what they call a comfort bra & is made of very loose nylon & spandex & is soooo soft. It has pockets for a prosthesis if necessary. It's style # 2132 and it is made in the USA. My bra lady calls it a comfort bra & it sure is that. It doesn't give great support but it is better than a camisole & very very comfortable. Good luck with the swelling & keep up the exercises to help drain the lymph. Love & hugs. Pam

Posts: 6
Joined: Jan 2001

Hello group, My name is Katie and I just joined today. About the lymph.... I was lucky and didn't get any signs of lymphodemia till about 5.5 years post surgery. I wasn't happy when my Dr said there was nothing that would help. I went back to the oncologist and was directed to a "lymphodemia clinic" here in Olympia, WA. They do a massage that comes out of Sweden. It works wonders! I love my therapist she is a jewel. The exercises I do when I am starting to feel "that fullness" and I wear my compression sleeve when I do "beyond the normal" stuff like gardening and working outside. Anyway, I can keep the swelling down and the discomfort only gets bad when I forget to do "the stuff", so far "knock on wood" I have kept the swelling down.

Posts: 3
Joined: Jan 2012

I'm looking through sites to learn how to deal with my lymphedema. I was wondering how you are handling your LE. How's it going after all this time. Is there hope that I can get this stuff under control.
I have seen a therapist and I have a sleeve. I do MLD and just recently purchased a Lebed DVD for exercises. I'm just looking for some tips that work.

Posts: 3598
Joined: Aug 2009

You will usually get more replies by starting a new thread rather than pulling up VERY old ones. Filling out your Profile also helps with getting replies from 'Kindred Spirits'. I've been 'here' since Aug 09 and do not remember ever seeing any of the ones who posted on this 2000-2001 thread.

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