Would like to speak to someone with lymphedema

vlcarr · 07-23-2010, 06:07 PM

I'm fighting this lymphedema battle and honestly it's just too much to try and put in writing.

If there is anyone on the board who wouldn't mind talking to me via phone please send me a PM.

This was my greatest fear. I'm sure that sounds stupid compared to dying but I'm really having a hard time dealing with this on an emotional level. I'm doing counseling but that's not the same as talking with someone who understands.

I have questions to ask but am also seeking advice from someone who's been at this longer than me. Thanks so much.

Jackie07 · 07-23-2010, 10:31 PM

Vicky,

Ellie F mentioned this website in her thread back in April. Looks like a good one:

http://www.lebedmethod.com/links/

Ellie F · 07-24-2010, 03:37 AM

Hi Vicky
Sorry I am too far away for you to phone me. This method has started to be used at my onc centre. My therapist has been treating lyphoedema for YEARS and reckons that this is the best she has come across.
A friend of mine has also had some success with dragonboat racing!! She took part in a study that gradually built up the muscle strength in her arm (very slowly) till eventually a team of them rowed a boat. Each of them had improvement. My friend's resolved completely.
I wondered what stage lymphoedema you have and what treatment you are having at the moment?
Hope this is some help.
Ellie

vlcarr · 07-24-2010, 09:54 AM

Hi Ellie,
I honestly don't know what stage I am but it's not bad yet but seems to be swelling more the past week. I'm seeing a certified lymp therapist. I saw one before rads to get educated about prevention, then developed lymp after rads. I had to wait 6 weeks after rads because they didn't want to work on radiated skin.

I'm currently seeing them 2 days a week and doing the exercises they've prescribed for me. I'm also wearing the compression sleeve all day per their guidance. They also say that my neck surgery is impacting my problems as well. I was in PT for that when I found my lump. I had to wear the hard collar for 6 weeks so you can imagine the muscles in my neck never really got to build back up before the bc treatments started.

Also, in 2003 I separated my right shoulder (mast side) and the knot that you have there forever as a result of that has been bothering me. They basically say I have a lot going on--you think-lol.

Thanks to all of you who sent me a PM and I plan on calling you.

As always, you're all the best

PatriceH · 07-25-2010, 01:42 PM

I was/am treated for lymphadeam. I can't remember the stage, but it was reversable, although I still have swelling. Which from what I read can actually take up to 18 months to resolve. I wore the sleeve and glove until the therapist said things were under control. I still wear it when my arm feels more tingly than usual. My arm always feels tingly because of the nerve being severed during surgery.

I've slept for a year now (surgery was last July) with my arms raised on two pillows. I kind of laught at myself because now I don't know how to sleep any other way and I was always a stomach sleeper

.

I am always paranoid about the lymphedema flaring up horribly so might be overly cautious. My surgeon commented that there are probably way too many people walking around with compression garments.

Anyway, I've started an exercise bootcamp several weeks ago, highly scared that I would hurt myself and cause a flareup...I wear my sleeve and glove, and some days even a few hours after class, especially if we've done a lot of push ups....

All this to say...I've seen progress, but I'm always scared, ready to put my sleeve on at a moment's notice.

I also read that many endurance athletes are wearing compression garments to prevent swelling; obviously a controversial subject...but having read that, eases my mind some at what little swelling I may have and feel that if I'm diligent with my sleeve, manual draining techniques and exercises, hopefully I can keept it at bay.

Neb · 07-25-2010, 02:33 PM

There is a discussion forum on breastcancer.org that has provided me with a great amount of information and support on lymphedema. Like you, lymphedema scared me more than the surgery and it took a lot of convincing from the surgeon and my husband to let them take my lymph nodes. I got that pat answer, "Oh,only about 2% of breast cancer patients get lyphadema." Well, if that's true, there is a hugh number in that 2%. I've been dealing with it now for about 2 years, 6 months after surgery, (actually, fluid problems immediately after surgery). I've learned to live with it. It is a nuisance but I'm thankful for being able to do what I can do.

I wear my sleeve most of the time and I have a night sleeve. I hated wrapping. When I do the exercises, it gets better but I'm not as diligent about that as I should be. I'm also in Tennessee.

Erin Koepp · 07-25-2010, 09:10 PM

Hi- i think we have alot in common-diag. last may stage3. I developed lymphedema in march '10 my arm is not bad, but my hand gets pretty swollen. i do self massage 2xa day. i'm new to this posting stuff and don't really understand how you could get in touch with me to talk, but i'd be willing to. fyi-i get my port out tomorrow, and am not real comfortable with that. i'd rather keep it. sounds weird huh.

hutchibk · 07-25-2010, 10:15 PM

I have heard good things about these folks, even if you aren't in Houston or Texas, they might be able to assist you with info/resources. http://lymphedemainstitute.org/about.html

chicagoetc · 07-27-2010, 03:41 PM

Vicky,

Just wondering what you have learned through all of this...

Melanie

vlcarr · 08-11-2010, 05:18 PM

Sorry it's taken me so long to get back to this. I still have some folks to call but haven't gotten around to it yet.

I went back to work for 4 hours a day but get to work from home which is awesome. When I started back to work I started getting swelling in my hand and now I've developed some in my chest wall.

The glove they ordered for me just did not fit right. I have short, stubby fingers

so today they fit me for a custom one--hopefully that will not make my fingers turn blue.

I'm trying to avoid typing a lot at night since that seems to make my hand worse so that's one reason I'm behind on my posts. Please know that I appreciate everyone who sent me a message from this post. I do so want to talk with you but it's been crazy lately with work, pt and going back & forth to the boob store for various items.

Today I got the Solaris sleeve to wear at night and I also had to get new bras that have more support and are wider on the side as I have swelling there as well. No more pretty bras for me. She said I may be able to get back in those in a year

My therapist also wanted me to get a swell spot that I have to put inside my bra--man, I just feel that I have stuff stuffed everywhere!!!

This horrible heat is just making me more miserable with all these garments but I want to be as proactive as I can because my swelling is not bad and I don't want it to get that way.

Will wear the night sleeve for the first time tonight and the fitter said I should be able to tell a huge difference. I'm still doing pt 2 days a week.

They are working on my alignment which they say is way off. They feel a lot of this is due to my neck surgery which I was still in pt for when I found my lump last year. I also just started getting some massage therapy on my own to try and help with the neck issue.

Unless this improves I've decided to not get reconstruction next year because I don't want to make this worse. My surgeon insisted I wait a year from radiation so I have until May of next year before I can consider anyway.

Just wanted to give you all a quick update as to where I'm at right now. Thank you all so much for your continued support!

BonnieR · 08-11-2010, 11:36 PM

Vicky, do you live anywhere near LA? I have consulted a great physician whose practice is limited to lymphedema. Emily Iker.
Also I attended a Lebed exercise program at a local cancer center. And swimming is good treatment. But not hot tubs or saunas. Avoid extreme heat.
I was at early stage but I know how you feel about this diagnosis. I found it so discouraging to have something ELSE to deal with. Keep the faith.

Ellie F · 08-12-2010, 07:36 AM

Bonnie
Was the Lebed exercise course any good?? I have mild lymphoedema and my physio is going to run this course.She says that it is very effective in reducing the swelling.
Thanks Ellie

Erin Koepp · 08-12-2010, 10:30 AM

Has anyone viewed the "nwlymphedemacenter.org" site on mld? What do you think of their instruction and technique? This is what i do but i'm certainly willing try something different as i'm not sure my results are great. I have seen a therapist and her technique was a bit different--she was the one who told me to view this site.

BonnieR · 08-12-2010, 12:58 PM

Ellie, the program was fabulous. I really enjoyed it and would still be going except it is a little distance from home. The exercise was "fun" and ended with a nice visualization segment. I highly recommend it.

vlcarr · 08-12-2010, 07:55 PM

Just wanted everyone to know that although the Solaris sleeve is no fun to wear at night, it worked wonders last night. This was the first night I've worn it and I had significant reduction in swelling when I took it off this morning. My bad hand was smaller than my good one.

vlcarr · 08-12-2010, 07:56 PM

Bonnie,

I assume you mean Louisiana? Not close enough to do a class.

BonnieR · 08-12-2010, 10:29 PM

Vicky, I meant Los Angeles. Dr Iker is there.

vlcarr · 08-13-2010, 04:25 PM

Thanks Bonnie. I wasn't sure where you were so wanted to make sure!

Ellie F · 08-17-2010, 11:11 AM

Hi Vicky
I have never heard of solaris and don't know if it's available in England but it sounds FABULOUS!! So glad it's working.Is it uncomfortable or hot at night? I am going to try googling it then I will get in touch with my therapist to check if it's available. Any further info would be really appreciated.
By the way who is the cute baby?

Ellie

vlcarr · 08-17-2010, 01:29 PM

I went and looked at it to make sure I had it right. It's made by Solaris and it's called a Tribute sleeve. Solaris also makes the swell spot I use that helps channel the fluid from where it's swelling. You have to put these in your bra and you can move them around.

I'm hot all the time but I find the night sleeve to be doable. It's fairly light and not that hot. It comes with a top sleeve you put over the foam. I'm still learning to get it on by myself and I'm getting there!!

It's still working great-when I wake up in the morning you can see all the indention in your arm and my arm is down to a normal size. I have to travel next week so I'm really glad I have it to take with me.

If you need any more info please let me know and I will ask my therapist.

The baby is a friend of mines. They tried to have a child forever and were unable to. They were able to adopt Sammy Grace about 6 months ago after many disappointing let downs. Her head is like a mini me! She loves to hang with her Aunt VV