Update regarding cold laser therapy

HappyTrisha · January 2009

Happy New Year all! It has been more than six months since the end of my cold laser therapy and I wanted to give you another update. I haven't had any kind of therapy since that time. I don't remember the last time I wore a sleeve or did anything else. I went through the holidays, rubbing and scrubbing, lifting, shoveling snow and doing everything that is part of a normal life. As I write this I look down at two arms that look virtually identical.

Obviously I cannot recommend cold laser therapy enough. There have been times when it has appeared that I may have overdone things and my right arm appears a little puffy. But it appears that whatever new channels were opened with the cold laser therapy manage to take care of that on its own.

I will keep an eye on things and give you periodic updates. Be well.

Trisha

notme · January 2009

How wonderful! What kind of medical provider do you go to? Did your insurance pay for it?

HappyTrisha · January 2009

I went to the LE clinic at one of our hospitals. I specifically was seeking out a facility that used the laser since I had read great things about the results patients were getting. Someone on this forum directed me to Mark at Biohorizons Medical (they are the supplier in the US) and he told me who in my area was using it.

My insurance paid 80% and I had to pay 20%. I believe the recommended therapy is a 6-week course of therapy, going twice a week. (That was my schedule).

Anonymous · January 2009

I am so happy to see this. Its encouraging to know that they are coming up with treatments for lymphedema besides encasing our arm/arms in thick wrapping and garments that are hot during the summer.

neat · January 2009

Trisha,

That's wonderful! Thanks for sharing your experience.

The low level laser from Biohorizons made a very positive difference in my LE, too, and greatly improved my quality of life.

Best wishes for good health!

notme · January 2009

Trisha, Do you have Mrak's email address or phone number so I can find out if anyone is doing it in my area?

inspiewriter · January 2009

That's great to hear!

What is the procedure like when you go in?

inspiewriter · January 2009

I am disappointed--Johns Hopkins doesn't offer laser and still thinks decongestive therapy is "the gold standard." They are the 3rd best cancer hospital in the country and I thought for sure they'd be on top of it.

LindaLou53 · January 2009

Inspiewriter,

Complete Decongestive Therapy (CDT) is indeed still the gold standard of LE treatment. This includes the MLD, compression bandaging, exercise and skin care. The cool laser therapy was never intended to replace CDT but rather to be an adjunctive treatment for those who respond favorably to it. I own and use the LTU-904 laser from RianCorp and have found it very helpful with my fibrotic areas of LE. But I still do MLD daily, wear my compression garments and do good skin care in addition to utilizing other helpful modalities like Kinesio Tape and a rebounder.

I am hopeful that the cool laser therapy will be more available in time from certified lymphedema therapists. Currently you may be unlikely to find it in use by a major hospital but it can be found at freestanding physical therapy and lymphedema clinics. The major hospitals will be open to including this therapy as part of their standard regimen only after more clinical study is done on a much larger scale than is currently available.

I understand the rationale behind making sure a new treatment modality is safe and is provided by well trained certified professionals. I believe that the cool laser therapy is still at the grass roots level and personally I feel fortunate that I am able to benefit from it now, but there are many persons not willing to take that risk on a new treatment until it is more thoroughly researched and tested.

Your best bet for finding a therapist using the LTU-904 cool laser (the only laser FDA cleared for use in Lymphedema) is to contact the current distributors of the laser here in the US:

http://www.biohorizonmedical.com/

http://www.bandagesplus.com/prd/101/1159/LOW-LEVEL-LASER-UNIT.html

Or to contact RianCorp directly with questions:

http://www.riancorp.com/

inspiewriter · January 2009

Thanks Linda. Laughing

dreamwriter · January 2009

Hey I have never heard of this treatment. I am gonna ask my LE clinic about it. Question.... one arm is regular size and the other is almost exactly twice as big as the regular one. Would the laser be able to make a difference for that much difference??????

HappyTrisha · January 2009

Hey all, sorry that I didn't see the most recent posts!

Well I'll say this. For the FDA to approve of the cold laser for LE they certainly were satsified with all of the studies that had been done heretofore, seeing that Australia has been using it for a while now, and very successfully.

Lots of hospitals and clinics are using it. Because certain centers don't have it doesn't necessarily mean much since LE treatment hasn't really been a heavy hitter anywhere. The hospital I went to for my treatment is the top hospital in my state and a teaching hospital for Brown University. My therapist is head of their physical therapy clinic, is a certified LE therapist, and has worked at the hospital for more than 25 years.

You'll have to forgive me when I chuckle about "gold standard" especially when it refers to a condition so ignored as secondary LE has been. I celebrate those in the profession who are willing to go beyond the wrapping and physical manipulation to try things that are less oppressive and so much more conducive to living a "normal life".

I did not use the laser at home. Perhaps going to a certified LE therapist who has the more expensive version of the laser and has been thoroughly trained in its useage makes a difference since I have not had to resort to any other treatment or modality and I don't wear a sleeve. Perhaps if I had purchased the "at home" version and attempted to use it on myself I wouldn't have witnessed the resounding success I have had. No way to know.

Inspiewriter, to answer your question I had to go six weeks, twice a week, for about an hour each time. My therapist would use the first part of the session using light massage to open the channels. Then she would switch to the laser and use it on very specific areas. You really can't feel anything. Each session was the same thing. She told me that it continues to work even after treatment is suspended.

Dreamwriter, I don't know the answer to that question, but I can tell you that my therapist told me she used the laser on a woman who had a terrible problem with leg lymphedema and that she had managed to get the leg feeling very soft and way down in size.

It may be that using the sleeve could bring about a faster or better result. I did use it during therapy though not all the time, and at this point in time I am not using it at all. I cannot speak to the success rate of everyone who tries this but I can say that I have only heard positive stories so far. I hope that with the laser we are really on to something!

Because I don't check in every single day I may miss some posts or questions. Please feel free to PM me because I'm pretty sure that I get notification in my home email if I have a PM.

Good luck and God bless. I really hope that those of you who want to try it get a chance to do so. Also, for more information you might want to Google cold laser therapy and Australia and read about the success they have had in Australia with it. That's where the cold laser therapy for LE started.

Trisha

LindaLou53 · January 2009

Just so there is no confusion. There is only one FDA approved laser for LE and that is the LTU-904 from Australia. There is no "at home version" or a different "more expensive" professional version, they are one and the same. While it would be fantastic if there was truly only one treatment modality that worked for all of us, the truth is that every single case of LE is different. Many women with stage 0 or early stage LE are fortunate to not require daily wearing of garments, but there are many of us for whom those standards of LE care are very necessary.

I am a huge proponent of new research and leading edge treatment modalities, otherwise I would never have paid out of pocket for the laser myself. I happen to believe the laser has resulted in amazing improvements for many persons with LE. I hear success stories from my PT-CLT all the time who also uses the laser in her practice. But it is also true and has been reported by Rian Corp during their clinical trial that the benefit of the laser was seen in only about 33% of the women. There are any number of factors that can affect whether or not a persons LE will respond favorably to the laser treatments, so it not a given that this treatment will replace other therapies for successful LE management.

I personally believe the laser has been beneficial to me and I continue to use it, but I also know it has not been as dramatic an improvement as others have had. I cannot afford to quit wearing compression garments but that does not mean I won't continue to seek out additional treatment modalities that offer reasonable hope based on reliable data and research.

I truly hope that more clinical data and research will further support the benefit of laser treatments in LE. I only advise reasonable caution and thoughtful research before anyone chooses to stop totally practicing the basics of CDT in favor of any other single modality. Lets all hope that one day the ugly, hot, uncomfortable compression garments will reside only in a museum of medical antiquities, but for now at least for many of us, they are still the mainstay of keeping our LE under control.

HappyTrisha · January 2009

Linda I was told that the at-home laser is a scaled-down version of the ones used by hospitals and clinics and is a lot more affordable than the ones they use. In any event, I personally felt more secure having the treatment applied by a trained professional, but that's just me.

The points in your post are well taken though. My not using anything else was more an experiment than anything because I was prepared to go back to using my sleeve etc. if I noticed a problem in not doing so. I hope that some other women being treated with cold laser at least try to experiment a little with lessening their dependence on the other garments just to see if they can do with them less. I think the worse that would happen is they found they still needed them. But maybe some of them would also find they could do without them - or at least use them less of the time.

What actually prompted me to experiment leaving the garments behind was the first-person article I read on the internet when I was doing research on the cold laser (it was that article that actually convinced me to give the whole thing a go.) The woman involved lived in London and travelled to Australia for treatment. She mentioned that she felt she was doing so well she could do without her sleeve but for caution purposes still wore it occasionally. So that prompted me to experiment with the same. Only I basically left it behind, and so far so good.

kira66715 · January 2009

I've been staying out of this, but I feel like I have to make a couple of comments

1) the laser is NOT FDA approved, it was CLEARED for marketing through the 510 (K) process, which requires no evidence of either safety or efficacy. Rian tried to get it through as a class 1 device and it was held up for 3 years and approved as a class 2 device: approval means it's felt to be equivalent to another device already in use. Since there is no other laser for LE, that's clearly not the case

2) the GAO recently released a report about how the FDA clears devices and was highly critical of the 510 (K) process

Even the one published study in Cancer 2003, Dr. Piller wrote that much more study was needed to clarify the mechanism and yet he has written to me that they have no intention of doing any further studies. As a device cleared through the 510 (K) process, no post marketing survelliance for either safety or efficacy is needed.

I recently spoke to a national/international expert, a physician researcher in LE, and he told me of a study from Turkey that he saw, and he's concluded that the laser is not effective and he does not support its use.

I would be thrilled if the laser was proven to be both safe and effective, but there were no trials done to prove that and there are none being done, at least in the US.

Clearly women have posted that it has helped them, and that's great information to have.

We've written about this on the site:

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

Our options for treatment of LE are so limited, that it would be wonderful to have more therapeutic tools. In the case of the laser, its safety and effectiveness are not proven, and at this point there are no plans to study it further.

Kira

HappyTrisha · January 2009

Kira,

Rather than go back and forth on all of the points in your post, I have decided to insert a link to the release that went out when the FDA "gave permission" for the cold laser to be used for LE. They noted that they evaluated it for FOUR YEARS and found NO ADVERSE EFFECTS. I will also post a link to the outcomes of the study, a link to some case studies that actually show the difference in limb or truncal reduction (this might help answer your question dreamwriter), and then a link to a page I found where other LE sufferers are looking at the laser in a much different light from some others here.

The only other point I really feel the need to make is that any researcher who will say the laser is not effective in helping to control LE has to be an IDIOT. Why do I say that? Because the opposite has been proven to be the case! It makes me think of the competition and jealousy that is known to exist between different researchers, research centers, hospitals, and even countries. I am not saying that the person you talked to is necessarily a product of that but he certainly is uninformed and not up-to-date! (My opinion.)

I want to say ABOVE ALL that the last thing I wish on any of us is further harm or additional problems. I cannot say anything more than I have had perfect results and I keep hearing the same kinds of stories. I am willing to do this, but that is my nature. I would hate to ever hear that anyone had problems down the line. It is worth it to me to go with it, especially since they've been using it since 2000 in Australia and to me that is plenty of time to hear about what may have gone wrong.
_________________________________________________________________________

Here is a link to the FDA release: http://www.riancorp.com/media/pressrelease.pdf

Here is the link to the trial summary: http://www.riancorp.com/media/ClinicalTrialSummary.pdf

Here is the link to the case studies: http://www.riancorp.com/Case-Studies/

(Be sure to link on "read more" for the ones you want to read. You will see the pictures of before and after.)

When you read the FDA release you will see the comments by Dr. Piller. If he says he won't be doing further studies it may well be because he's convinced of the effectiveness of the laser. It certainly sounds like it!

OneBadBoob · January 2009

I too have been trying to stay out of this conversation, but feel there are a few things I need to add.

No one knows exactly how the laser works. It is a scientific mystery.

When I brought it up with my LE therapist, she said there was no way anyone in their group would use it, and that there were several lawsuits in the State of CT by people who used it and developed Brachael Plexopthy from it. Aare these lawsuits resolved? No, not yet, but I am keeping an eye on them.

There is a theory that the laser "cooks" the fibrotic tissue. For some people, this may be helpful, but for others, who have a genetic propensity for developing LE and fibrosis more than others, this can be a total disasterl

We are anxiously awaiting new studies on the genetics of LE and why such a large percentage of women never develop it no matter how any nodes are removed and how few risk reduction behavior they follow, and yet others (like me) have one or two nodes removed and develop LE.

My feeling is I am not willling to take the risk of using the laser and jumping from the devil I know into the deep blue sea, which I know nothing about. And might drown.

So, I will stick with MLD and my compression garments, and daily exercise. It takes lots of time and effort, but it is working, and it is the "gold standard" and I am personally not willing to take any risks that can make thing worse either now or in the future.

I am also uncomfortable that this laser has eye warnings in every other country except the USA. The Bush administration has turned the FDA into a total joke, and anyone who thinks thr FDA is protecting us, the consumers, in any way, should do a little more research regarding the changes in the FDA since the begining of the Bush administration.

We each have to make our own decisions as to what risks we will take, and what risk reduction behaviors we are willing to fit into our lifes--but, as always, buyer beware.

kira66715 · January 2009

Trisha,

All you posted were press releases from Rian.

I spoke to the top researcher of lymphedema at Stanford, and we both agreed that the laser has not been adequately studied and the few poorly done studies in the world literature do not show significant benefit.

If you understood what I wrote: the FDA cleared the Rian laser for marketing as as equivalent to other lasers on the market. They held up its approval for 3 years. The approval process they used does not require scientific proof of either safety or effectiveness, and Dr. Piller hasn't provided either.

He doesn't intend to study it further because he can sell it without further studies, and the FDA doesn't require that he monitor its use.

Johns Hopkins doesn't use it, Stanford doesn't use it, and Rian's press releases don't reassure me.

The study in Cancer in 2003 was NOT a double blind, placebo controlled trial: 64 women were divided into two groups and half got two treatments and half got one treatment, and the women who got one treatment had essentially no response, and about 33% of the women who got two treatments, followed for only 3 months, had some decrease in their arm size. It was a tiny study, the follow up was too short, and the benefit wasn't even statistically significant.

And Dr. Piller himself wrote in that study that much further study was needed. But why bother when you can sell it directly to the public?

They tried to get it cleared through the FDA as a class 1 device, and the FDA which usually pushes through just about everything in medical devices, held it up for 3 years and eventually cleared it as a class 2 device--class 3 are lifesaving devices or implantable devices.

The FDA did NOT study the laser: the clearance process they used, the 510 k, does not require study, just that the product is considered equivalent to another product already on the market.

So, the bottom line, for me is that the laser deserves further study, and absolutely no one is doing it in the US, although the most recent study on a few women in Turkey showed essentially no benefit from the laser.

I'm glad it helped you. I would like the FDA to require real studies before they clear products for marketing. There was a recent report on the FDA's approval of medical devices done by the GAO and they feel that the FDA is not doing a good job of making sure devices are safe and effective. It was just released to Congress about 2 weeks ago. So it's not just the laser, there are other products they approve, like an electromagnetic helmut for depression that is worthless.

Patients with lymphedema deserve better. We deserve the studies and the proof and the full understanding of how and when this device would benefit us.

Kira

inspiewriter · January 2009

Thanks Trisha. I have been looking into it--I saw a photo of a tiny hand held laser thing so I asked the price--it's $4K.

Also asked for a list of local buyers so I might contact them, but haven't heard back.

I also noticed that the website said your therapist could rent one for a month--that might be a possibility for future treatment.

HappyTrisha · January 2009

Kira -

IF YOU BOTHERED LOOKING AT THE STUDY this is what it says:

Results of a randomised, double blind, placebo controlled, clinical trial.

So either we are talking about two different studies OR YOU GOT IT WRONG FRIEND. I didn't say this last night because I was trying to be both understanding and politic, but when I looked at your website, it was clear to me that you are on a mission to discredit the laser.

I am one of those women who have been a GUINEA PIG in different clinicial studies so that maybe future women can benefit. I do NOT get any financial or any other kind of benefit from sharing my experiences. I came here with a sense of excitment because I had hoped that others might have some of the same results that I did.

A doctor posted on here a while ago, a very respected doctor who is trying out something else to help LE patients and merely asked for anecdotal information in case any of the women here had experience with the instrument she had started to use. Instead of being welcome she got a ration of sh*t from women here who, it seems to me, would prefer that others remain in place since they are remaining in place. The doctor, as it turned out, was the head of the radiological association in her state and had been treating LE patients FREE and on the side because she believed in her modality and was hoping to publish about it and that's why she was asking for any anecdotal information patients might have had. She had won numerous awards also. She was treated like a pariah and basically accused of trying to drum up business.

This is the last time I will be visiting this site. If there are any women who are interested in keeping this conversation going, please feel free to PM me and I will definitely answer back.

And oh yeah Kira, looks like you cherry pick the researchers you believe. Someone talks about a study in Turkey and you hop on board. A study done at a respected center in Australia by top researchers has little merit because you choose not to believe it. Well here's a clue: the study showed that people had "SIGNIFICANT IMPROVEMENT" and the results were considered SIGNIFICANT. I guess that doesn't matter because you obviously know better.

And because Stamford and John Hopkins doesn't use it is of no moment to me since the majority of women here have continually howled about how LE isn't given the attention it should get. Frankly the top centers are much more concerned about curing cancer than attenuating LE.

Again, I'm done here. I will PM people who are interested in any more information about the laser. If I get any further information about anything having to do with LE, I sure won't be coming here to share it.

Binney4 · January 2009

"A doctor posted on here a while ago, a very respected doctor who is trying out something else to help LE patients and merely asked for anecdotal information in case any of the women here had experience with the instrument she had started to use. Instead of being welcome she got a ration of sh*t from women here who, it seems to me, would prefer that others remain in place since they are remaining in place."

Hi, Tricia,

That'd be me, right?! Smile

Just so you know, the doctor you refer to and I kept up a long and very fruitful email conversation, and I was eventually able to direct her to a PT using the treatment she had in mind in a clinical setting. We had, all along, a congenial and mutually respectful relationship, as she understood my objections to her posting on a patient board. It should be no problem to you to go do a search for her and ask her yourself if that's true. If you doubt it, I hope you will. In fact, I gave her your name (and "neat"s) to contact by PM when she's ready to recruit for her study, because if she tries to post a recruitment notice herself she'll be in trouble with the moderators -- one of us patients can suggest studies that are looking for subjects but, for obvious reasons, if the researchers post a call for subjects themselves they must first get approval from the mods.

Tricia, I appreciate your enthusiasm and your willingness to share your experiences here. I understand your anger and frustration with those of us who think it's important to balance your elan and derring-do with another, darker side to this issue. Also, a big thank you, Tricia, for your willingness to be a "guinea-pig" for the sake of finding better treatments and even cures for bc. We all owe you a debt of gratitude for that. But hopefully you did that willingly, giving informed consent. Those of us intent on stating the other side of this issue only want to make sure that anyone who opts for laser treatment understands what they're choosing.

As for your accusation that I'd "prefer that others remain in place since they are remaining in place," Tricia, I say in all humility that you will not find many others who have worked as long and determinedly as I have to find a way out of this horrific condition for all of us. Not just for me -- for all of us. I truly hope you'll stick with us, even though I and others will certainly not back off from warning about the sloppy handling of both the reasearch and the FDA clearance on the laser. I'm appalled at the irresponsibility of those involved, and I'll continue to protest it in every way open to me until a proper understanding of the safe parameters for laser use in LE treatment can be demonstrated. Such an understanding would not only provide for our safety, but advance our understanding of underlying causes of LE that is needed if there is ever going to be a cure for this.

I hope you'll rethink your decision not to post here again, but of course I'll respect your decision either way.

Be well!
Binney

neat · January 2009

Trisha,

Like you, the low level laser made a HUGE improvement in my quality of life and greatly helped my LE.

I thank you, and others, for posting about your positive experiences with the LLL and with other treatments. I learned from you all and super appreciate your sharing your positive experiences.

I first heard about the LLL online. Eighteen months after beginning LLL therapy, I believe that the LLL is one of the best things I bought in my entire life. My whole family is blown away by how much the LLL has helped my LE. I am glad that it helped you, too, Trisha!

Best wishes for good health!

OneBadBoob · January 2009

Trish and neat, I am delighted that you have had such a wonderful experience with the LLL.

This is not a do-it-yourself therapy, and for those who chose to "do it themselves" as they can, as the LLL is available on line, there could be some dire consequences.

Like those who think if one pill is good two pills must be better, I am sure certain people would obtain a LLL and feel that if a little treatment is good, a little beyond what is recommended might be better.

And I do think we all have to remember that while we who actively post here are a small, well informed group, there are many hundreds, if not thousands, of "swell girls" on their LE journey, whether just starting or well along the way and possibly desperate for help, who come here to read and at this point, or maybe forever, are too shy to actually "jump" into the conversatioins.

I think it only fair that all sides of issues of treatments for LE are covered--no one is "picking" or "singling" out anyone for critzism, and indeed, the LLL is very controversial, not just within our group, but within the LE community, including physicians, LE therapists and LE researchers.

When we were doing our research for the website, we reviewed a number of studies--full studies, not just the abstracts you get on-line, and would be happy to share the full studies in pdf format with anyone who wants to review them--just pm me your e-mail address.

These include full article
http://cre.sagepub.com/cgi/content/abstract/23/2/117 (Efficacy of pneumatic compression and low-level laser therapy in the treatment of postmastectomy lymphoedema: a randomized controlled trial which has a wonderful graph of different treatments and their effectiveness.) Here is part of the disdussion in that full article:

"Other than our study, in which the patients were followed for 12 months, only Piller and Thelander followed seven patients up to 36 months. They found return of the lymphoedema at 36 months in contrast to earlier improvements at one, three and six months."

And full article http://www.ingentaconnect.com/content/oup/annonc/2007/00000018/00000004/art00639;jsessionid=d227w8devs61.alice?

A systematic review of common conservative therapies for arm lymphoedema secondary to breast cancer treatment A. L. Moseley1*, C. J. Carati2 & N. B. Piller3

And even in the abstract, they state: [T]here is still the need for large scale, high level clinical trials in this area.

As Kira said, we deserve better.

Lets all stick together and demand more studies be done and more research be undertaken regarding lymphedema and its treatments.

otter · January 2009

I think it's important for us to "post our positive experiences" with the laser therapy, or with any other type of therapy. Heaven knows there is too little information available about LE diagnosis and treatment.

That said, I think it is also important--perhaps even more important--for BCO members to be able to offer negative experiences and precautions about various treatments.

Each of us has our own personal story, good or bad, that we bring to these boards; and each of us has our own way of dealing with the challenges of BC and LE. Some of us base our decisions on personal experience; others have a small number of confidants in whom we trust; still others (like me) use a combination of sources, including having our noses in the medical literature, combing it for information. All those approaches are valid, and each has its advantages and disadvantages.

I know this sounds odd, but the foundation of medical science--in fact, the foundation of all science--is doubt. Nothing good or useful ever gets accomplished in science--including medicine--unless someone declares something to be true, and then someone else says, "Okay, PROVE IT!". That's when things get exciting, and for us, that's when ideas get turned into "evidence-based medicine."

These are "discussion boards." By definition, "discussion" includes debate, with differences of opinion. People ought to be able to debate things without losing their tempers and shouting at each other.

I'm sorry if all that sounds too, um, preachy. I need another cup of coffee, I think.

otter

kira66715 · January 2009

The heated nature of the discussion made me go back and re-examine my concerns: and I still feel like the laser was cleared without adequate study. And I do feel we deserve better. You don't find Piller's study where the LE returned at 36 months on the Rian site.

That said: I don't deny anyone's reality. The laser has helped a number of women who post on these boards. And I'm thrilled when anyone improves.

I come from a background of evidence-based medicine, and I also know that clinical experience is very valuable--but often when "facts" are carefully studied, we find they're not as true as we thought. I've worked in the medical field long enough to see pendulum swings: to see truths get debunked.

As Otter said, we all make our decisions differently. And Trisha is right, LE is understudied: I recently was told that the Komen foundation refused to fund a LE trial, because they are only funding studies that focus on "the cure", not the quality of life of the women who have been treated.

There is not a single study about the laser, including the one in Cancer, that doesn't say it needs more study.

This is Dr. Piller's conclusion from his study that Trisha posted:

Considerably more work needs to be done to bet-

ter understand the mechanism of action and improve

the efﬁcacy of LLLT in a range of applications, but the

results of the current study demonstrate that laser

treatment for lymphedema may have some clinical

beneﬁt16:91–97.

I'd just like to see that considerably more work done.

It was very disturbing that this discussion became so angry. I'm not denying anyone's improvement--I celebrate it.

Kira

Bahons2 · January 2009

HappyTrisha

Please can you pm me?

I don't seem to be able to send new pms, only to reply to ones that have been sent to me!

Thanks

Bahons2 · February 2009

Hi all - I've stayed out of this until now, but it's been fascinating!

I think I may be the person that some of you read about, who travelled from the UK to Australia for LLLT treatment a few years ago. I have no medical training, nor scientific background, so I am not going to quote papers. I don't live in the US, so I am not going to comment on how your medical care there is delivered, either.

When I went to Australia, I was treated with a Class III free-standing scanning laser. For an hour a day, followed by massage for an hour. It worked. Very well. No side effects. No regression since (apart from a few hiccups during some recent chemotherapy). This laser is much, much more powerful than the Class I RianCorp hand-held, which is a mere 'baby' in comparison. And apart from directing the RianCorp device into the eyes, it's frankly hard to see how you could do yourself much damage with it.

Class III lasers have been used to treat lymphoedema in Australia for over 20 years. Before that, they were being used to treat sports injuries. They are also widely used by veterinary surgeons. Class III hand held lasers are also used by physios in many other parts of the world. I've also been treated with one of these.

Since I went to Australia in 2002, I have, through treatment for another primary tumour, developed lymphoedema in my other arm and purchased the RianCorp laser which has been the subject of such heated discussion here. I have been shown how to use it correctly (by an Australian lymphoedema physio) and it is a tremendous help. But it's no magic wand. I still need to do other tedious stuff, but I'm a lot more comfortable and I feel as tho' I'm in charge of the lymphoedema and not the other way round. (It's also good for tennis elbow and chilblains, by the way!).

It's obvious that we are not issued with identikit lymphatic systems and this will affect how individuals respond to treatment. In fact, I was warned, by Prof Piller, before I went to Australia for treatment with the Class III laser, that it is not suitable for everyone (and the only way to find out if I was, was to go there with my fingers crossed) and of those for whom it is suitable, there are always some who do not respond as well as hoped.

Then again, there is always patient compliance to take into account. I think there are always those who assume that a few sessions of laser therapy amounts to a 'carte blanche' to go off and do all sorts of things you might have tackled differently, more slowly or with help!

I've had very, very positive experiences with lasers over a number of years. They really aren't that new. But they are never going to attract interest from the likes of drug companies or surgeons, or oncologists, are they? What would they care? We're at the bottom of the food chain when it comes to this kind of thing. As someone else said, lymphoedema is not a 'big hitter' in terms of research.

And CDT may be the 'gold standard' - there's no denying it works - but it's so incredibly primitive. .....

A few thoughts, ladies, that's all!

LindaLou53 · February 2009

Bahons2,

Thank you so much for your post! I find it extremely interesting and informative to hear directly from someone who has undergone laser treatments for some time now. I welcome your ongoing input into this discussion! I feel it is so important for us to continue to seek not only scientific data but also personal, real-life experiences that I believe to be just as valuable.

I have also been fascinated by this discussion. I think in spite of the differing opinions, one common thread is that we ALL want to find effective and safe treatment for LE. I do not doubt the sincere motivations of each and every poster here who is either trying to share their good success stories to benefit others or who is trying to protect the safety of others.

I find myself somewhere in the middle of the spectrum regarding the ongoing debate on the cool laser. As an owner of the LTU-904 Rian Corp laser I obviously did not let the lack of larger studies deter me from incorporating the laser into my own LE treatment routine. Being an RN and a data oriented person, however, I still value and seek validation in the scientific research arena. I think your statement regarding LE being unlikely to attract attention from the major players in the pharmaceutical and medical research groups, however, is unfortunately very true. So what are we to do?

This is where individual choice comes into play. This thread has proven that we all use different criteria for making our choices in life. What is right for me may not be right for someone else. The bottom line is that not a single one of us will ever have a guarantee that we are making the right decision at any point in time. As much as we all want a cure, as much as we all want everyone else to be safe and healthy as a result of their choices, it is still their choice. We may not agree with another person's choice but we cannot deny their right to make it.

I honestly think the emotions which this thread has generated is just a testament to how much we all care. It is not enough that we want to find the best LE therapy for ourselves, but we also want to help others who walk this LE path. I feel that the key is we MUST continue to freely welcome the sharing of all information.

I am very happy to hear your account Bahons2 of your experience with the laser. I find it truly interesting that you were initially treated with a Class III laser without any apparent negative side effects. I know the concept of laser therapy for some generates images of "radiation", "heat" and "cooking" of tissue, which would scare anybody away from considering it as a treatment option. Based on my limited research and my personal experience, however, I find that to be an inaccurate characterization of the LTU-904 as a Class I cool laser device. I also am of the opinion that with the proper training, supervision and periodic monitoring by a professional, there are many LE treatment modalities that can be safely and competently self -administered.

There is just no way we can guard against every possible risk. But to be able to come to a site such as this to share information openly and honestly is what allows many of us to make the best decisions that we can for ourselves. We also have to remember that a decision made today may change tomorrow based on new information. We do the best we can with the information at hand and don't look back. This has been true from the first moment of our cancer diagnosis and through out all the treatment decisions we must make.

Bahons2 I thank you again for your post and all the other posters here who contribute towards our attempts to navigate this LE path. Lets keep the discussions going!

kira66715 · February 2009

LindaLou and Bahons, thank you both for your information and your understanding that while we may reach difference conclusions, we all share similar concerns--overall, we want the best treatment for our lymphedema. We all have different comfort levels, and weigh different factors into making our decisions.

I was unfamiliar with laser classes--I just knew the FDA device classes I, II and III--with III being lifesaving/implantable.

The laser classes are assigned due to their potential for eye damage:

http://en.wikipedia.org/wiki/Laser_safety

And apparently the classification system changed a few years ago, so newer classifications are numberic (1,2,3) , the older ones were Roman numerals I, II, III

Linda, I couldn't agree more that we are all doing the best we can with the information available.

As I wrote earlier, I believe we deserve more: we deserve to be a priority funding for the Komen foundation (who refused to fund a LE study because they only want to look for "the cure") , and we deserve on-going studies of the laser, now that it is sold and used.

Rian called their study double blind/placebo controlled: only there was no real control arm--half the women got one set of treatments, after a sham set of treatments (their placebo)--and that group had 4% benefit, and the other group got 2 sets of treatments. So, the comparison was two sets vs. one set of treatments, followed for 3 months.

His earlier study of 10 women who got 16 treatments showed the benefits waned after 36 months.

Please understand: I want it to work--I also want the additional studies that every single researcher reports are needed, to be done.

Thank you Linda and Bahons2 for your willingness to try it and report back, and your willingness to discuss this respectfully.

If the FDA doesn't require study or post marketing surveillance, we get our information from each other. The GAO report was very harsh on the FDA, so in the future, devices may actually need to prove they're safe and effective before they're sold to the public.

Kira

HappyTrisha · December 2009

Was just poking around and found a PM that I didn't know was there (sorry Rabbit fan!) Since it dealt with cold laser therapy I thought that I would take the opportunity to update everyone on my progress. I put my sleeve on yesterday for the first time in months and months. I did it only because my arm was hurting a little and thought it might help. I shovelled my entire driveway when we had the snowstorm last week (18 inches of snow) and never checked to see whether or not my arm swelled. If it did, I can tell you the swelling disappeared on its own!!! I baked, cleaned, wrapped, shopped, hauled bags, did all of the Christmas stuff without ever thinking about wearing a sleeve. If I ever notice any swelling - usually after I have worked out - I don't think twice about it since I know it will go away on its own. And it does.

For anyone who wants to give cold laser therapy a try, obviously I cannot recommend it highly enough. I had radiation to the side where I have received the treatment and haven't had any problems. (that was part of Rabbit fans question)

Hugs to all.

Trisha

Katiejane · January 2010

I happen to stumble upon this discussion and was wondering if there are LE Clinics that actually use these lasers to help w/ LE? I certainly wouldn't feel comfortable buying one and using it on myself. Any one have info on location of these clinics?? Thanks!

Update regarding cold laser therapy

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