lymphedema?

[Janet535]

After surgery for ovarian cancer, i expanded hugely. My Dr told me I had "lymphedema". I went from being 46 kilos to 73 kilos. I litterally had fluid coming out of my pores. The fluid stopped after about 2, almost 3 weeks but i was still extremely huge. It took 8 weeks for it to go down enough for me to start chemo. I'm still 10-12 kilos bigger than what i was prior to surgery and it's an all over size gain, as it was immediately after surgery. (just not as large, thank goodness). I guess my question is, once you get lymphedema, do you always have it? Does it ever go away? Are there things you can do to lessen it? Or perhaps, there are things I'm doing to make the situation worse. I was told this condition is reasonably common after surgery and was told, not to worry about it, it will fix itself. Well, it hasn't and while I appreciate it might not be the worst thing that can happen, it would be nice to be able to have some control over your body when you have so little control over other aspects of having re-current ovarain cancer and what the drugs/chemo to do you. I'd appreciate any feedback if anyone has something to offer. Thank you :)

[StillFighting]

Brightest Blessings, I'm located in claremore. about 30 miles outside of tulsa. The summer hasn't been to bad, I tend to stay indoors though when it hits those tripple digits hahaha....but i'm figuring ways around that to laughs....

[Jan214]

That was really nice considering all that you are going through yourself. How very thoughtful you are.

[dian07]

Where in Oklahoma are you kid?  I love Oklahome's air.....it's the best there is!  I lived in Lawton and on Ft. Sill when I was a kid and returned 10 years ago for a high school reunion......the air smells the same after all these years......
I hope for your sake this is a manageable deal.....what a nightmare......hopefully you aren't dealing with high humidity on top of the heat.   You take care kid.....I hope you are having a wonderful (or at least bearable) summer.
Take care and touch base every once in awhile;  henslick at netins dot net.
Peace.
dian

[Teresa222]

Perhaps the fact that my doctor did not biopsy my lymph nodes is a blessing in disguise.  I am so sorry for you who suffer this additional problem.

You know..I open up MedHelp each day and I just FEEL SO SORRY for so many people.  At times, I don't know how I could feel any deeper for you guys than I do.  
God Bless everyone with this disease and then some!
Teresa

[Conquerer]

i had some problem in the beginning but by being in a pool almost every day swimming and walking it is in check  good luck

[Jan214]

Hi Janet.  

Did the Dr who told you it would go away stage you?  If you have Stage 1 lympedema it will go away eventually if you treat it right to begin with.  Stages 2 and 3 are irreversible.  

Has your Dr suggested MLD (manual lymphatic drainage) therapy?  When I was in between my first and second ovca recurrence I developed stage 1 lymphedema.  I went to a therapist who did the manual drainage and than put compression garments on my legs right away.  I had therapy 3 days a week, an hour each sesion and it was for a month.   I sitll continue to do my own massage therapy just to be sure because it could come back again, plus it feels good.  The therapist will teach you and someone else (who can reach places you can't) how to do it at home. It is a full body massage and if you get a therapist who doesn't do the whole body find another one.  Do not let anyone like a husband or BF attempt massage without checking with the Dr.  It is a very particular type of massage and just rubbing your shoulders or your back doesn't cut it.

If it is at all possible I would look for a physical therapist that has the Australian equivalant of a specialty certification from the APTA. That is a certification program that is in addition to their license. They should have a minimum of 135 hours of MLD training.

Make sure to ask your Dr first if you are okay to have MLD. There are some people who absolutely cannot have it done. For those that can, it really helps a lot especially for stage 2 and 3, as it alleviates a good amount of the swelling & pain.  Lymphedema can be controlled, but you have to stay on top of it.  You just have to make it part of your daily routine.
Good luck to you.
Jan

[StillFighting]

hey dian, I have all that **** to and believe me I'll be out there in the sun complaining right along side ya....

I'm not much for gardening, but I love camping and thats not a good thing in this oklahoma heat. I have found that were there is a will there's a way hehehehehe
I sit under a shady cover, have a fan going on me at all times, wear lots of 50 proof sun block and kick back with my feet up and reads a good book hehehehehe.
It does sound bad, and it can be if you dont take care of your self.

[dian07]

WOW....as if this stupid disease isn't enough!  I really feel bad for you guys.....what a frustrating thing to deal with.  You  guys are amazing women and I certainly tip my hat to you.  You are an example for me.....sometimes we just don't realize how good we have it.  I hope you are able to enjoy your summer........I will think of each of you when I am out in the garden or mowing the lawn when I am sweating buckits, cursing the bugs and heat......you will remind me how lucky I am to be able to get out there and complain freely!  Take care ladies...I will think of you and wonder how you are doing often now that I know what you are dealing with.
Peace.
dian

[StillFighting]

oh and no tight jewlrey, rings, watches etc. try and buy a watch thats loose fitting if you have to wear one.

[StillFighting]

I feel like I'm missing something out of my list so let me look....

keep "at risk" extremity clean and completely dry. avoid vigorous repetitive movements against resistance.
avoid tight socks/stockings and tight undergarments.
avoid extreme heat. sun, saunas and hot tubs.
avoid trauma, insect bites, scratches, bruising, cuts etc.
if traveling by air use those compression stockings during flight.
always wear shoes with closed toes and heels.
see podiatrist once a year.
wear clean and dry socks or stockings.
use talcum powder on feet, especially if you sweat a lot.
excercise is important. I have an indoor trampoline (the one for exercises) just by jumping on it helps move the lymphatic system around.
I also have one of those gray balls that I use to help stimulate the lymph system.
if your feet swell you can get one of those pool noodles, cut it down and roll it under your feet, that helps to.

[StillFighting]

Lymphademia is caused by surgery. When ever Dr's remove lymph nodes you are at risk...Lymph nodes carries toxins around the body until it can be expelled. when you get lymphademia its because this proccess has been interrupted and the lymph nodes are not able to do there jobs as effectively...

so what can you do to help keep this life long condition under control?
avoid heavy lifting, extreme heat, avoid severe fatigue, use an electric razor, never ever have blood preasure or blood drawn from the affected limb....if traveling for long distances where those special gloves they have out (the tight ones) avoid trama to the limb, cuts, sun burns, bruises etc. wear gloves when gardening.
avoid cutting cuticals.
you are at high risk for infections now so keep an eye out for rashes or blisterings report them immediatly to your dr...

You can also get more information off there web site www.lymphnet.org

Good luck.

[StillFighting]

oh give me a min to type it all out, I can tell you all about lymphademia you ever wanted to know and then some.

[jlock]

My lymphdema shows up when I'm on chemo and is usually caused from the steriods.  So my Onc has stopped the steriods..not only because of the lymphdema,but I also held so much fluid that I was going into congestive heart failure.  I know there are special hose for this condition and there are also specialists for this as well.  Ask your Onc for some help here and  refer you to the specialists.  They will be able to determine what type of hose you need and the correct size as well.  Good luck~~~~Joanne