We are 212,154 members in 82 forums discussing 151,809 topics.

Help with Abbreviations

Topic: Herbs to help with Lymphedema

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

Posted on: Aug 4, 2014 10:22PM

Rubiayat wrote:

I've developed a large seroma in my thigh three months post my TUG flap. So today I started researching supplements that might support my system and help with the swelling and I came across this:
http://www.lef.org/magazine/mag2005/mar2005_profile_glasser_01.htm?source=search&key=lymphatic

Life Extension Foundation (LEF) is an organization I trust and I am going to start taking the horse chestnut herb and see if it helps. I think I have truncal lymphedema too and anything that helps my lymphatic system seems worth exploring.

I wanted to share this in case it may be helpful to others.

Oncotype 28 Dx 11/7/2013, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 11/7/2013, DCIS, 1cm, Stage 0, Grade 3, 0/3 nodes Surgery 12/10/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 12/19/2013 Lumpectomy: Left Surgery 2/10/2014 Lumpectomy: Left Surgery 5/5/2014 Mastectomy: Left; Reconstruction (left): TUG flap Surgery 1/15/2015 Reconstruction (left) Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Page 1 of 1 (19 results)

Posts 1 - 19 (19 total)

Log in to post a reply

Aug 5, 2014 02:19AM carol57 wrote:

Gosh, we all want all the tools we can get to help tame this crazy condition. But horse chestnut is controversial, not proven to work for LE although there may be some evidence that it helps for varicose veins and for water retention.  Water retention and LE are not the same animal, and for that reason we're advised not to take diuretics, which remove water but leave behind thick, protein-rich substances that are like petri dishes for bacteria to take root and multiply.  

This topic comes up from time to time. It's not proven to work, but it's not proven not to work, and some people swear by it. Before anyone starts taking it, I hope you will invest a few minutes to read these precautions:

http://www.webmd.com/vitamins-supplements/ingredie...

The biggest worry here is that taking it in the wrong form can be extremely harmful.  Rubiayat, I'm confident that you've done your homework and will indeed take care to choose a properly prepared supplement, but I worry that someone casually dropping into this forum might not realize how important it is to do her homework before taking this herb.

Log in to post a reply

Aug 5, 2014 06:51AM vlnrph wrote:

Just did a search here and found that these posts are the only ones on bco.com to mention horse chestnut! Surprising because I have run across references to use in venous insufficiency, as Carol57 discusses, and usually warn anyone thinking about it to consider potential anti-coagulant effects. 

The product must be an extract (the whole herb contains toxic components). Since these items are not FDA regulated, the doses can vary. Still, it's not likely to hurt most people since it has been popular in Europe, especially Germany, for decades. Many reports are anecdotal, not large scale or blinded/controlled trials.

I did however locate an abstract of this study done by my colleagues at the UW in Madison showing no beneficial effect in arm lymphedema:  meeting.ascopubs.org/cgi/content/short/22/14_suppl/8095

Curious to note in the magazine article cited above by OP that LE is suggested as a cause of hypertension & stroke. Again, is blood circulation being confused with lymphatic function? I also thought the photo of a massage therapist's elbow in someone's back was not the way to depict gentle MLD which is probably what helped most of that practitioner's clients...

IDC too! Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

Aug 5, 2014 07:14AM vlnrph wrote:

My link may not be working, here's the text 

Horse chestnut seed extract for the treatment of arm lymphedema

P. R. Hutson, R. R. Love, J. F. Cleary, S. A. Anderson, L. Vanummersen, S. L. Morgan-Meadows and E. A. Doran

UW School of Pharmacy, Madison, WI; UW Comprehensive Cancer Center, Madison, WI; UW Dept Biostat Med Informatics, Madison, WI

8095

Background: Lymphedema of the arm occurs frequently as a consequence of surgical and radiation damage to the major lymphatics during lymph node dissection (LND) and adjuvant treatment of breast cancer. Usual lymphedema treatments are massage, compression sleeves and wraps; there are no drug treatments currently available in the USA. This is an interim report of our use of Horse chestnut seed extract (HCSE) for the treatment of arm lymphedema in breast cancer survivors. HCSE is widely used in Europe for venous and lymphatic disorders, and is postulated to act by decreasing capillary and interstitial permeability. Methods: In this double-blind, randomized, and placebo-controlled study, eligible subjects with stable arm lymphedema receive placebo or HCSE (50mg escins) twice daily PO for three months, followed by a 1 month washout. Eligible subjects have affected : unaffected arm edema ratios of ≥ 1.1 to 1 by bioelectric impedance, and significant response was empirically set as a 15% decrease in arm ratios. Arm edema is measured concurrently with serial tape measurements, water displacement, and bioelectric impedance. Subjective assessments include the FACT-B QOL instrument and a 16-item experimental lymphedema questionnaire. Results: 25 subjects (of 68 sought) are evaluable at 3 months. 24 patients are at intermediate assessment points and accrual continues. One patient developed progression of known breast cancer metastases; one developed minor, reversible dizziness and tolerated 50% dose reduction. There are no statistically significant differences in the amount of lymphedema at 3 months by any of the measurement techniques. Small changes in arm volume are not reflected by correlative changes in the scores of the QOL instruments.Conclusions: HCSE at doses commonly used for treating CVI or varicose veins is well tolerated in breast cancer survivors with lymphedema. This interim analysis does not demonstrate significant objective or subjective benefit of HCSE in reducing arm lymphedema. QOL questionnaires need improvement to identify issues that more specifically reflect the impact of lymphedema. Funded by the Susan G. Komen Breast Cancer Research Foundation (BCTR 0100506).

IDC too! Rt MX+DIEP 4-2011; ALND 5-2011 d/t micromets; TC X 4; tamoxifen; lymphedema 9-2011; switch to letrozole 3-2014 for 1 yr; bone mets 8-2018: Zometa, rads to spine, Faslodex/Versenio Dx 3/7/2011, ILC, 2cm, Stage IIA, Grade 2, 1/25 nodes, ER+/PR+, HER2-
Log in to post a reply

Aug 5, 2014 07:27AM carol57 wrote:

vlnrph, thank you for sharing your professional resources on this!

Log in to post a reply

Aug 5, 2014 10:48PM Rubiayat wrote:

Thank you Carol for raising any concerns there are with horse chestnut! I did not read that it was a diuretic and I do not want to suggest a herb that could be harmful to someone with LE. I read that horse chestnut improves circulation and stabilizes the support structures for veins, skin and other connective tissues.

Given that horse chestnut has been used for decades in Europe, I wish there were more studies (and on numerous other possibly beneficial herbs/supplements) to better demonstrate whether a herb is helpful or not and safe or not.

Oncotype 28 Dx 11/7/2013, IDC, Left, <1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 11/7/2013, DCIS, 1cm, Stage 0, Grade 3, 0/3 nodes Surgery 12/10/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Surgery 12/19/2013 Lumpectomy: Left Surgery 2/10/2014 Lumpectomy: Left Surgery 5/5/2014 Mastectomy: Left; Reconstruction (left): TUG flap Surgery 1/15/2015 Reconstruction (left) Hormonal Therapy 2/2/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Aug 6, 2014 06:22AM carol57 wrote:

Rubiayat, horse chestnut sure does seem to have been used for ages and ages.  I share your frustration that there hasn't been enough research to help us sort out what's beneficial and what is not.  Big Pharma is probably not interested, so money for that kind of study is not likely to materialize.  A supplement that works would be a wonderful answer to LE.

Log in to post a reply

Aug 6, 2014 08:39AM glennie19 wrote:


If they can't patent it,, Big Pharma is not interested in researching it.  No money to be made to pay for that research.

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/8/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
Log in to post a reply

Jan 6, 2018 04:09AM - edited Jan 6, 2018 04:11AM by McButterfly

Hi, I'm new here. My right arm lymphedema just became noticeable on December 3, 2017 while working here in Italy. I've had a hell of a time getting information as I don't speak Italian, but I won't go into all of that now. I must tell you, though, that I cried when I found this forum. OMG! I'm not alone and my arm may not explode. I was told about a homeopathic by my naturopath back in Canada called Lymphomyosot made in Germany by Heel. I did find it here on amazon.it and have taken it for a few days but without any results I can track.

I'll add, too that my mastectomy was 23 years ago and I've not had lymphedema in all the time until now. But I was diagnosed with a reoccurrence in June, 2015. I believe the culprit to be the Letrozole that I started taking about 8 months ago and then the long air flight here. Sorry if I'm getting off track. Posting to see what you know about the Lymphomyosot. Thank you, dear ones. So happy to find you! Angela

Log in to post a reply

Jan 6, 2018 11:54AM Binney4 wrote:

Angela, welcome!

Goodness what a predicament you find yourself in--I'm so sorry!

Herbs that might conceivably help with lymphedema would be of the sort that reduces inflammation, but looking over the ingredients in Lymphomyosot, I don't see anything of the sort there. The bromelain in fresh pineapple or selenium in Brazil nuts are sometimes cited as helpful, but those of us who use these measures do it as an a supplement to actual lymphedema treatment, not as a treatment itself.

If you cannot connect with a trained lymphedema therapist there, then some self-care may help until you can get professional help. Here are some ideas about ways to help yourself until then:

http://www.stepup-speakout.org/How_You_Can_Cope_wi...

Lots more information at that website, too--take some time to look around.

There is youtube help with self-Manual Lymph Drainage (massage) here:

Really hoping you'll soon have some hands-on, professional help, but until then please let us know how we can help.

Gentle hugs,
Binney

Log in to post a reply

Jan 8, 2018 01:07AM - edited Jan 8, 2018 01:12AM by McButterfly

Thank you for your response, Binney. The scariest part, that I didn't mention and maybe I'll start a thread for, is that I did find a LDM here in a nearby town, but when she found out I have "active cancer" — as in a reoccurence, she wouldn't treat me. Same with the osteopath I had been seeing, who spoke to the LDM and was told she shouldn't treat me, either. I wasn't able to speak to her myself, but the fear was that they would spread the cancer through the lymph, or even through a cranial sacral treatment. (If that's the case, it's too late now as I've been doing a self-massage for about 2-3 weeks now.)

I've been searching for treatment in order to 1. learn how to wrap myself; 2. get the swelling down; and 3. learn more and discuss the possibility of flying home; oh, and 4. get treatment before it advances and destroys tissue, etc.

So the order of my BC has been: 1995, DX and MX and removal of 13 LN; 2015, reoccurrence — only cleansing diet, no surgery or radiation but the tumors continued to grow, so 2017, began Letrozole; late 2017 (December 3) lymphedema.

Am feeling a bit frantic as I've been searching and looking and going down rabbit holes with nothing turning up so far except I was directed to a shop where they measured me for a guantlet and sleeve that is very pricey but is supposed to be ready by January 10.

I do hope I'm not overwhelming you with my frustration and fear. I am okay and get a little stronger each day, as it really has been a test of my ability to accept the situation and carry on with my search. And thank you for these links — they are just what I need to know.

Gentle hugs back,

Angela

Log in to post a reply

Jan 8, 2018 01:49AM - edited Jan 8, 2018 01:53AM by Binney4

Angela, please don't worry about overwhelming us with frustration or fear--been there, done that! It gets better as we find good and caring treatment and start to see how we can take control of it all.

There has long been a fear of using Manual Lymph Drainage (lymphedema massage) with active cancer, the rationale being that the cancer could spread through the movement of lymph fluid. If cancer spread were that simple (which it's not!) and we could stop the spread by not moving lymph fluid, then you'd have to lie flat and perfectly still for the rest of your life, because the main lymph pump is muscle movement--it is going to move with every movement of your body, whether or not you engage in Manual Lymph Drainage (MLD). The MLD just makes it more efficient and easier on your body.

If fact, the lymph system is part of your immune system and acts to destroy invasive cells, so stopping all lymph flow (even if it were possible--which it's not!) would be counter-productive. So the current thinking is that lymph massage is not going to spread cancer, and may even improve our chances of knocking it out, since it moves lymph fluid to the nodes for cleansing.

Still, those who were trained earlier may not be comfortable treating lymphedema in the face of a cancer recurrence. Some of them compromise and do lymph massage but avoid the area of the recurrence, and that's probably a reasonable strategy.

All that just to say it's not unusual to find a lymphedema therapist who will not treat a patient with active cancer. I am not a doctor and would not suggest going against your doctor's recommendations, but just want you to be aware of what the current thinking and practice is.

Learning to wrap yourself is a great idea--always a helpful tool to have in our self-care toolbox. But it's tricky and a steep learning curve, and you definitely want hands-on instruction for that. The glove and gauntlet are a good idea, but they need to fit well. Hopefully the shop measuring and ordering them is knowledgeable and can check the fit. Here's information that can help you make sure the fit is a good one:

http://www.stepup-speakout.org/proper_fitting_of_l...

Hoping some of that helps! Please keep us posted and let us know what you discover.

Hugs, chocolate,
Binney



Log in to post a reply

Jan 8, 2018 08:00PM McButterfly wrote:

Yes, Binney, it makes perfect sense that flowing lymph is better than stuck, trapped lymph. Possibly the fact that I'm from another country and she just doesn't want to deal with that added complication. I'm not sure what my own oncologist back in Canada would say as I haven't been able to reach him but I will keep trying. The one MD I've seen here regarding this knew nothing about MLD and I read that the lymph system is not a big part of what is studied to become a doctor.


I have an appointment at a hospital here in Italy with a physiotherapist on Wednesday. I have no clue what will happen there, but will keep you posted. Thank you for what you've shared with me so far. Much appreciated (and anxiety-reducing!)

yes, chocolate hugs, :)

Angela

Log in to post a reply

Jan 9, 2018 03:53PM - edited Jan 10, 2018 01:10AM by hugz4u

Let us know what happens. Ask if he has lymphedema training and is well certified in lymph drainage not just a weekend course.

Refuse an ACE type bandage if he wants to wrap arm. If he uses this,it would mean he has little experience with LE because we don't use ace bandages to get swelling down. We use special short stretch bandages instead.

Your onc in Canada may not know much about lymphedema as it's not a hot topic in med sch. Let's hope he does though!

I pm'd you back!

Log in to post a reply

Jan 10, 2018 02:19AM - edited Jan 10, 2018 02:20AM by Binney4

Ooh, yeah--no ACE bandages. But lymphedema bandages look exactly like ACE bandages, so don't panic if s/he approaches you with a roll that looks like an ACE! The kind of bandages we need are called "short stretch" (in English, anyway--haven't got a clue what they're called in ItalIan...) They're not as stretchy as an ACE and can provide the gradient compression we need. Here's a picture to give you an idea of the classy look of a wrapped lymphedema arm!

http://www.stepup-speakout.org/wrapping_bandaging_...

Not exactly stylish, huh? Still, people are impressed when they see us, and maybe that's worth something.

Looking forward with you to good news about this therapist!
Binney

Log in to post a reply

Jan 10, 2018 02:36AM Momine wrote:

Forget homeopathy, but you can try eating anti-inflammatory foods. It won't "cure" the problem, but may help some. Basically, avoid white starch and sugar, eat greens, fatty fish, garlic, onions, and hot pepper. Also, get some exercise. The only thing that moves lymph around is muscles contracting. You shouldn't antagonize the arm itself with anything extreme, but I found even walking briskly to be somewhat helpful.

Dx 6/1/2011, ILC, 5cm, Stage IIIB, Grade 2, 7/23 nodes, ER+/PR+, HER2- Chemotherapy 6/19/2011 Cytoxan (cyclophosphamide), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil), Taxotere (docetaxel) Surgery 9/12/2011 Mastectomy: Left, Right Radiation Therapy 1/8/2012 Surgery 3/7/2012 Prophylactic ovary removal Hormonal Therapy 3/31/2012 Femara (letrozole)
Log in to post a reply

Jan 10, 2018 06:56AM hugz4u wrote:

Lets not forget to ease up on salt. It’s a big offender and on a plane or resteraunt it’s rampant in our meals. Pack your own low salt nutritious meals for travel. Keeps you from swelling too much. Also drinking water is very necessary on flights. It helps move sluggish fluid

Log in to post a reply

Jan 11, 2018 09:32PM - edited Jan 11, 2018 11:03PM by McButterfly

Michelin Man, indeed, Binney. I wonder what the big difference is between the two types of bandages? Just my curious nature.

I got to see the physio-MD at a local hospital yesterday but she couldn't treat me because I'm not part of the public health program here. But not quite back to square one. She answered many questions and referred me to a private clinic which I'm looking into. She suggested 1. I wear the comp. sleeve every day, during the day and remove at night; 2. the reason to avoid scratches, mosquito bites, etc. is that our immune systems are compromised (less lymph carrying stuff out) and to get a mild and simple antiobiotic if ever I get a fever or my arm turns red and hot; 3. mine has been caught early so it's possible my arm could go back to normal, but I will always have to wear sleeve; 4. no problem doing lymph drainage massage with a reoccurance or active cancer (I'm taking hormone therapy); 5. when arm goes down, have arm measured for smaller sleeve; 6. don't go into the sun during the middle of the day without covering the arm. She specializes in this and they have a full program at this hospital, including wrapping, massage, and physio, including swimming. I wish we had something like this at the cancer clinic in Victoria, but it's all private with prices to match, I think. Perhaps an Rx will help getting it covered by our medical system.

Yes, Hugz, I assumed the salt was an issue. And packing my own food is a good plan. Thank you.

And thanks, Momine, I totally hear you and agree on all counts. A clean, sugar-free, no white flour (even better, no flour), whole grain, fruit and veggie diet is the way to go. I also make a green juice first thing in the morning — that's medicine for me.

Re: the private therapists that won't treat me: I am now in possession of an Rx from my oncologist for LDM as well as another one from my Naturopath, who is specializes and is a professor of Oncology, so that should get some results. Also, osteopath will see me again, now that I have these. I'm still working on the dr's note to allow me to change my flight. Since I have no place to stay if I go home early, I've found a room in a small town here with trains to all points. Once I start getting treatment, I'll be able to do some of the sight-seeing I haven't been able to do since I'm so off the beaten track now, and will be in even better shape for flying.

The compression sleeve still is not ready. Evidently it's coming from Germany.

That's it for now. Thank you all for your incredible support. It has probably taken 100 pounds or more off my shoulders and lightened my heart. xo

Log in to post a reply

Jan 11, 2018 09:33PM - edited Jan 11, 2018 09:33PM by McButterfly

does anyone know and/or use this video?




Log in to post a reply

Jan 11, 2018 11:14PM McButterfly wrote:

I'm sure it's controversial. I've started taking Wobenzym, 10 per day. I've noticed my body is much less achy and I don't feel so restricted through the back. The jury is out on this and the FDA and some medical sites have made some negative claims, but mostly what I've heard from people I trust, is positive. It's been recommended for cancer, inflammation and also, specifically for lymphedema.

Page 1 of 1 (19 results)