New to this LE thing

cmhartley

Hi there, I typically post on the stage IV board but found that I need to post here also.  I was diagnosed in 2005 and treated with chemo, surgery and radiation.  I had a complete axillary node dissection during reconstruction in 2006 due to postivie LNs.  I had a very mild LE in my wrist occasionally about 1yr after my surgery but never had to treat it.  So, I had been sailing along until I was diagnosed with bone mets last year and recently liver mets.  I have been doing fine with my treatment until my LE showed up....4 yrs after treatment!  I'm not sure what brought it on....my old oncologist who is very knowledgeable allowed a few needle pricks (no tourniquet) to that arm then I travelled to Colorado to elevations of 9,000 ft and then a plane trip home and voila here it is.  I do have to say that I cut my finger on a kitchen knife which I think further complicated things.  Wow, I can't believe it.  LE sucks!  My onc wants to check it out next week and then I think I'm going to find an LE therapist to help me out.  I have an old sleeve and gauntlet but that is about it.  I appreciate all the info ya'll have posted on this board. 

Thanks!

Cat

kira66715

Cat, I'm sorry you joined this group, but getting it under control is important--the earlier you diagnose it and the sooner you get into treatment, you'll get it under control and feel better.

Here's a link to finding a qualified therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

I'd be hesitant to recommend an old sleeve and gauntlet, as poorly fitting compression can trap fluid.

Here's a link to what to do while waiting for your first appointment:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

LE does suck, and it's just one more thing you have to add to dealing with--let us know how we can help.

Kira

Binney4

Aw, Cat, I'm so sorry! What you need is a top-flight lymphedema therapist, so do use the page Kira posted to look around your area. Call a few and talk to them -- there's a list of questions you can ask on that page too. Then when you talk to your onc you'll have a clearer idea who you'd like to see for this.

Therapy is gentle, non-invasive, and it really helps. You'll learn to do your own self-care, and that will give you back control. But it's lots to learn, so do pop in here and share the journey -- we have a lot of practice cheering each other on!

Keep us posted!

Big, gentle hugs,
Binney

Suzybelle

Hi, Cat:

Girl, you are so right.  LE does truly suck.  BUT, it's not a total drag once you get a good LE therapist and learn how to manage it.  I have had several flare ups with LE since I developed it in April of this year, and one of them was from a cut on my finger.  The other flare/cellulitis episode was from who knows what...that's one thing I'm learning...LE can be quite mysterious, and not in a charasmatic, 'want to get to know you better' kind of way...it's the obnoxious, 'I want to punch you in the face' kind of way!

Binney and Kira are so right - as soon as you can get into a good LE therapist's office, you will be on your way to getting better.  If you can drink lots of water and elevate your arm until then, all the better.

Hang in there - it's manageable, and doable.  It's just a big learning curve, but once you get over that, it's much easier.

Best wishes to you!  Please let us know how we can help. 
Suzanne

mrsnjband

Hi Cat,

I'm so sorry that you have to deal with this.  LE does suck! 

Advise for the future you will need a sleeve to wear in high altitude & when flying. Like you, I have no idea what brought mine on.  It think it was gradual but in the spring I had to go take care of my mom after having a stroke.  That stress definitely caused my LE to flare.

I would definitely recommend the MLD (manual lymph drainage) a good LE therapist will teach you how to do this. It is really helped to make a difference in my arm.  Also like Suzanne, I recently had a flare because of cellutitus. 

It's all doabe but can be very frustrating.  NJ

cmhartley

Thanks to everyone for your kind posts!

Kira,  thank you so much for the links.  I will do my research.  I was able to find a few therapists close by.  I'm seeing my onc today so I'll get the orders.  I actually found the sleeve and guantlet was making things worse so I took it off and I'll read up on what to do.

Binney, thanks for chiming in and for the good advice.  I see that several people refer to you and you seem very well versed (unfortunately) on the subject.  

Suzybelle and Mrsnjband:  Thank you for your support also

I just love this website.  I've found such a large support group here not only for my metastatic disease but now for my LE.  Thank you all so very much!!   I'll keep ya posted.

Cat