Truncal Lymphedema

Dejaboo

No one is going to ask me how it is going with the Castor oil??

 

I am going to start a new thread with Castor oil in the subject so others will see it

RMlulu

Dejaboo

is the Castor Oil working?

Just did major road trip...LE didn't fly...unpacking new house...sis new grand babe...stepmom heart attack...makes my LE not so big...down 4 cm yippee.

Where do you purchase, how apply, does it smell?

Dejaboo

RNlulu Im sorry to hear about your stepmom.

For me the Castor oil is working.  (though it has only been a we 8 days) I bought mine at the Vitamin Shoppe.  I bought Cold Pressed Castor Oil.   It isnt expensive.  About $5 for an 8 oz bottle.

I dabbed it on my worst area with my fingers.  I then put a Layer of folded Tshirt fabric over.  Then some Saran wrap over (to protect my bra)- then my Soft bra to hold it all in place.  I left that on for 4 hrs.

I could smell it when I 1st put it on, though it wasnt offensive really.  After that I could not smell it.

You could google Castor Oil & decide if you want to try it or not.

Here is the new thread I started:     http://community.breastcancer.org/forum/64/topic/817484?page=1#idx_1

RMlulu

Dejaboo - will go to the vitamin shoppe in the morning...ready to try.

Hope the Super Bowl party gang don't notice...ha!

mnmbeck

OK....since we are talking about interventions that have no physiologic reason to work, I wonder....Isn't it true that nobody really understands LE?  I am thinking that, if an intervention isn't dangerous, it is worth at try.

SO.....I have read that some people have had success with cabbage leaves helping their LE.  Has anybody heard of this?  I worked as a lactation consultant, and we routinely recommended cabbage leaves as a treatment for engorgement.....and it works really well.   I understand that engorgement and LE are not the same, but I wonder if it's worth a shot?  Has anybody ever heard of this?

Kicks

Never heard of cabbage leaves for LE.  What's supposed to be done with them?I; Make coleslaw and eat them? 

carol57

I never tried it, but I have read elsewhere that cabbage leaves applied as a wrap are not harmful but do not have any effect on LE. This is just a recollection and I don 't know where I saw this. mnm, do you have a sense of why it works for milk engorgement? Lots of traditional or folk remedies turn out to have a basis in science, so I'm curious to know if this one has ever been examined for a scientific explanation.  And if anyone here has applied the leaves with good results for LE, please do share. 

mnmbeck

I read that the leaves should be quickly dropped in boiling water (just a couple of seconds), then out, rolled quickly with a rolling pin (breaks up something in the leaf), and wrapped around arm. I read about it somewhere recently, and of course there was someone who had success, according to the article I read. Who knows!  I do believe it said they should stay at least overnight, ideally longer.

With lactating women, we just had them put cabbage leaves in their bra, right against their skin.  It always worked.  And, I am pretty sure I recall why, but not sure enough to put it in writing.  There is some chemical in the cabbage leaves.......ugh...that's all I can remember right now!  But, it's pretty common practice in the world of lactation :-)

I'll look into it a bit more and see if I can find something more substantial to report!

carol57

mnmbeck, thanks for that explanation. Milk engorgement and LE are sure two different pathways to discomfort, and I am fascinated that a cabbage leaf in a bra can cure the former.  I'd love to know what the chemical is, keeping in mind that aspirin is the poster child for medicine derived from ancient observations about plant-based treatments. There are some supposed natural treatments for LE that may or may not be demonstrated to work but that have safety question marks, such as horse chestnut and even castor oil, which some of our forum members are finding helpful and currently discussing in another thread. Whatever that cabbage chemical is may be something that a lymphedema researcher has looked at and it would be interesting to check the literature to find out.

Binney4

The LymphedemaGirl blog covered the topic of her attempts at cabbage-leaf therapy a couple of years ago. It's here:
http://lymphedemagirl.blogspot.com/2011/05/cabbage...

Interesting, light-hearted, probably entirely harmless. She has primary leg LE, and no one knows how different that might be from our secondary arm LE in terms of cabbage leaves. Or anything else, for that matter. The science of the lymph system hasn't caught up yet with our longing for a cure, but we'll get there! Onward!
Binney

carol57

Binney,, thanks for digging that blog post up. The photos are quite eye-opening!

LynnInColorado

REEBOK EASYTONE compression shirt alternative?  As these wonderful shirts become harder to find, I'm wondering about making one from an UNDERARMOUR shirt.  It seems like KINESIO or even duct tape could be sewn on in a similar pattern or on different areas as needed.  Any ideas/comments?  

JennieTinMaine

hi,

I had a double mastectomy 10/14/13, followed by radiation that wrapped up 1/9/14. Initially, I had a good amount of swelling from the surgery, but it did abate eventually. Unfortunately, in the last couple of weeks, I've had some pretty significant swelling reappear on my cancer side.  Significant as in people look at my chest and immediately notice it.

The swelling is in my breast area, in my armpit and right up to my collarbone. It is tender as all hell. I went on 3/10 to my plastic surgeon, who immediately sent me for an ultrasound. He was thinking infection but the US did not show any fluid buildup. Still, he put me on a course of antibiotics which did absolutely nothing for me. Yesterday, I saw my lymphedema specialist.  She is not convinced that the swelling is lymph-related, but what else could it be??? Seriously, help me out...WHAT ELSE COULD IT BE?  The whole area is visibly and painfully swollen, and hard to the touch. I feel like I have one of those gel wrist pads taped to my armpit. My neck and collarbone area are so sore that I'm constantly massaging them in hopes of getting some relief. Everything was so uncomfortable today that I stayed in bed.

Any help, advice, words of wisdom or commiserating will be greatly appreciated.

Jennie

LynnInColorado

So sorry!  Is your lymphedema specialist an MD?  I'd guess it's either fluid and/or an inflammatory response.   A widespread acute infection will be reflected in blood tests and IV antibiotics are usually preferred for treatment. 

If in your situation, I would do the following:  Advocate for yourself by calling today until you have an appointment or test orders from one of your oncologists, original surgeon, gynecologist or even PCP.  If they don't see you today or tomorrow and the problem persists, go to the ER of a good hospital.  People show up in ERs for lesser problems every day.  Gentle hugs and please keep us posted.

Binney4

Jennie, did your therapist give you any reasons why she thought this was not LE? 

Any redness, itching, fever, fluish feeling? Things to look for with infection here:

http://www.stepup-speakout.org/Emergencies_and_Med…

If you suspect infection get yourself to your doc or ER right away.

Please let us know how you're doing! Be well,
Binney

JennieTinMaine

LE specialist is an RN. She said that because I was experiencing pain, she didn't think the problem was lymphedema. That thinking is contrary to what I've read but, whatever.

Had an appt to see my plastic surgeon again today. He is now thinking capsular contraction? Awesome. To give me some (hopefully) relief, he removed about 120cc of saline from my expander today. He's hoping this action will give my chest some room, basically, to deal with the swelling. It does feel a tad bit better tonight, and maybe after a few days, it will improve. He wanted to bench me immediately from work, but it's already almost the weekend, so I figure work tomorrow then see how the weekend goes.

The minute he walked in the room today, I burst into tears. I've done so well keeping it together through this journey, but this pain, five months post surgery, has just really upset me. I don't know if I realized just how much til the waterworks started. I just want to be done with this nonsense, but I guess that's wishful thinking. And both my kids have a terrible cough, my daughter has a fever, I've started coughing and my ex-husband is a flaming asshole. Other than that, all is well.

Binney4

Jennie, I'm so sorry! And I really hope the expander reduction helps. But I just want to say, as a person with truncal LE, that it can be really painful. For me, the pain seems to move around so it's hard to pinpoint, but it's intense. OTC pain meds don't touch it. The only thing that helps is reducing the swelling with Manual Lymph Drainage therapy, and the use of gentle chest compression garments to keep it in control. Not every lymphedema therapist is familiar with treating truncal LE. Just a thought…

Gentle hugs,
Binney