Upcoming Drug Breakthroughs for Lymphedema!
I got to see Dr. Rockson who is one of the leading lymphedema specialists (and luckily my cardiologist). I was very discouraged and asked him if there was any hope for the future and he told me that two drugs are being tested now (on animals....poor things). He said that we should have a drug available to us in about 5 years. Even though that is a ways out...time passes quickly sometimes.
The first drug relates to controlling inflamation under the skin.
The second drug is one that allows new lymphatic pathways to be formed. I am VERY EXCITED about this one!!!!!!!!!!!!!!!!!!!!!!
I just keep picturing the new pathways being formed where I really need them...or where I need to direct fluid. This is really a wonderful thing to be able to hope for.
Comments
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Meggy, thanks! All good stuff! Hope is absolutely priceless! (Five years, huh? Let's see, that's 5 more extra-hot summers; 1,825 more nights of oven-mitt garments; 10 more every-six-months garment orders, and then...free at last! Hey! I can do this!
)
Actually, the inflammation control is the main event for me. That's because they're saying that LE is an inflammatory response in the first place, and the hardening that happens when LE progresses is caused by inflammation too. So that drug alone may prevent future secondary (caused by damage to the lymph system) LE and prevent progression of our lymphedema to fibrosis.
The drug that grows new lymphatic pathways may eventually be of special help to people who are dealing with primary lymphedema (an in-born lymphatic disorder) or those with secondary lymphedema caused by trauma other than any kind of cancer surgery. A new cancer drug, Avastin (bevacizumab), is in trials for early-stage breast cancer because it SLOWS the regeneration of blood vessels (and lymphatic vessels), because inhibiting growth of these vessels prevents tumors from growing. Introducing medications that acturally ENCOURAGE vessel growth presents special problems for those of us who have already had cancer. The hope for that one lies in their finding a way to control the regrowth with total accuracy. At the moment, growth of lymphatics in animals using these drugs is chaotic and uncontrolled, so the challenges involve being able to control the growth so that it's carefully structured and not rampant, and so that it does NOT encourage growth of new lymphatics in tumors. So, for that drug, it's going to take a lot longer than five years.
HUGE puzzle -- that one's a long way off, at least for us bc veterans.
Dr. Rockson is one of our research heroes -- yea, Dr. Rockson!
Hugs, Meggy!
Binney -
Thank you, Meggy. I got kind of emotional when I read this. Five years is better than no years!
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Did Dr. Rockson tell you the names of the drugs?
If you think about the supplements that are said by some to improve lymphedema (butcher's broom, horse chestnut extract, pine bark extract, selenium), they all have anti-inflammatory properties. KS1
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KSI,
He used ketoprofen in this study on mice tails:
http://www.ncbi.nlm.nih.gov/pubmed/20027220
http://www.ncbi.nlm.nih.gov/pubmed/19302023
I have emailed him in the past and he usually responds. We can give it a try--I don't know if he'd let us know the names of the drugs yet.
Kira
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Very interesting! My physiatrist has had me on high dose celebrex (a Cox-2 inhibitor NSAID) for the last 9 months because, post surgery & radiation, I developed a golf-ball sized axillary granuloma that pressed on my brachial plexus. I see him this week and will ask him what he thinks about ketoprofen vs. celebrex. KS1
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hello everybody!!
I hope some one is passing by at this topic one day since its old
. I see it was in 2010 that people were saying that maybe in five years something new could be available... That is in 2015! .... Any news? Fingers crossed! X
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Ditto - I'd love to know if these drugs are near market yet!
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ketoprofen is on the market and used for arthritis. It does not have an approval for LE treatment.
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The ketoprofen study seems to have disappeared--maybe there were problems with its long-term or high-dose side-effects, but it's dropped out of sight.
The VEGF-C study is not being permitted in the US because of potential dangers--the idea of this drug is that it causes lymph vessels to proliferate, and there are two problems with that. First, there's no way to control the proliferation in an organized way. And second, cancer tumors require lymph vessels in order to activate and grow, so you don't really want to encourage a whole lot of new lymph vessel growth in an area at risk of cancer recurrence. The VEGF-C drug, called Lympfactin, is made by a company in Finland, so that's where they were proposing to launch a Phase I Study, but that too has either been stalled or gone underground. Hoping for word soon on what's going on with all this.
Nothing's ever easy, is it?
Binney
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Hey Binney
True it seems like Lymfactin is gone under the radar
. It was launched in a press report some years ago like a promising something and now ... nothing
. It seems like they have some company problems.... First it was by Laurantis and now it is changed to Herantis. They are testing something for eye drops, but the Lymfactin remains quiet. I have send them a mail (maybe over a year ago ) and then they were about to start the trial. But no press release so I guess nothing.
Pff very frustrating. There need to be more money because there are many things in the pipeline. But things go sooooo slow . I guess Dr. Rockson is our hope
.
We have to mail them to let them know we are waiting
!
Take care everybody!X
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