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Topic: Two new, unusual, not FDA -approved treatment options

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: May 15, 2018 04:13AM - edited May 15, 2018 01:22PM by Moderators

elise24601 wrote:

Backstory: I'm one of those desperate people for whom all the traditional LE therapies have not worked to stop worsening swelling. Tried: regular use of custom fitted sleeves & gloves, PT massage and exercises multiple times a week since healing from mx/rads, wrapping/bandaging with special foam, staying slim and active, and avoiding all the known triggers very carefully. My LE started off stage 1 and then progressed to stage 2 within a few months. Swelling is mostly in palm of hand and upper arm.

I fantasize about cutting off my arm, and am willing to try almost anything now. I have a night garment and a flexi-touch pump coming in the mail, but am feeling pessimistic. I have a consultation with a surgeon, too, but I know the procedures are not cures.

Has anyone tried either of the following (not FDA approved yet)? The first is a topical treatment used for eczema, the second uses electricity.

1. https://www.ncbi.nlm.nih.gov/pubmed/28186091

2. https://www.iyasucolonics.com/services/#Bio-Electr...

Edited by Mods to make 2nd link hot.

Dx 5/4/2016, IDC, Left, 4cm, Stage IIIC, Grade 3, 15/28 nodes, ER+/PR+, HER2- Surgery Mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy Xeloda (capecitabine)
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May 15, 2018 12:13PM hugz4u wrote:

I get it when you say you want to cut your arm off. You sound so diligent to. It’s so frustrating when your at your wits end.

Many girls love the flexitouch. Make sure someone comes out and demonstrates the product properly and fits you right. I’m a newbie on flexitouch but I know it needs to be done the right way to be effective. I think it will work but you will still need sleeves glove garments daily and perhaps nighttime garments

Stanley Rockson is trying to develop drugs and it’s down the pipeline. It’s called bestatin a drug used for other purposes but seems helpful to us. You tube some of his talks. Very smart man in the field of lymphatics.

I’ll read over the link you sent when I have time.

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May 17, 2018 12:48PM Binney4 wrote:

Hi, elise,

I hear you on the frustration, and I'm so sorry! Really looking forward with you to better results with the night garment and the FlexiTouch. LE is a life changer, for sure, but hopefully you'll soon be getting some control back into your own hands!

The first article sure is interesting, and hopeful too. I talked to a couple of researcher friends about this, and though we're all hoping it's a breakthrough of grand proportions, the evidence isn't in yet. The research was done on mouse tails, which is a common first step in LE research because it's easy to induce LE in mouse tails and it gives at least an initial evaluation of the theory behind the research. One trouble with mouse-tail experiments, though (beyond the obvious fact they're not people limbs) is that LE tends to heal spontaneously in mouse tails, even if you do nothing at all. So, while it might indicate some potential, we're still a long way off from being able to predict what might happen in terms of either efficacy or safety in human use. (And besides, have you looked up the price of that stuff, even the generic--aaaugh!) Next steps would involve use of some other animal with less spontaneous healing capacity. One researcher suggested a pig or even a rat. Then eventually on to people. But there again, will this work for those of us with secondary LE (caused by cancer treatment), or on primary (genetic) LE as well? On adults or on children too? On those newly diagnosed or those with long-standing LE? What is the proper dosage for an entire arm or hand, and how long does the effect of the treatment last? Could it even be (all fingers crossed for this one!!) a CURE? And that's not even taking into account the problem of getting the funding for additional research, which is no small trick. In other words, jury's still out, but let's keep an eye on this and maybe even let our voices be heard on the issue of research funding, yes?!

The second link is one of those pop detox ideas that have to do with improving "the healthy lymph system," but really don't address a compromised one such as we all now own. A few years ago the lymph system became a very popular "new" idea with those in the "healthy bodies" business--spas, diet mongers, and the like. Which is not to say that's all bad--our lymph systems can use all the publicity they can get! Heaven knows they've been ignored for long enough! (Here's a look at a bit of lymphatic history, if you're interested: http://www.stepup-speakout.org/History_of_Lymphede... ) All these techniques gain a certain number of true believers, so it would be inappropriate to discount them completely. Just make sure the techniques you try are safe, especially for LE, and take it slow so you can judge the effects before getting too far along with it. So basically, if you have the time, money and interest to give it a try, that one at least is unlikely to cause you any harm, and it may make you feel a whole lot better. if you do, please do let us know what you discover, as we're all eager to learn and conquer!

Wishing you real answers and your life back in your own hands again soon!

In lieu of a cure, chocolate helps. Happy Gentle hugs,

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May 17, 2018 02:24PM - edited May 17, 2018 02:28PM by hugz4u

The reason moderators called it a hot topic was because the link didn't come up and they fixed it to work.

It's not that it's a cure all treatment and they want us to eagerly read it. It's interesting though to know what's out there in lymphatic drainage world. Unfortunately it's not the gold standard for treating LE. Keep the ideas flowing as were here to help and learn about this condition.

For moving le fluid try the Tai chi exercise breather post I made. Research proves it moves fluid and is a lot cheaper to do and not time consuming. I’ll try to bump it up. Also they say mini tramp moves fluid. Some swear by it. Not jumping but barely moving off the mat. Not time consuming either.

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