Has anyone taken low molecular weight heparin to help ... - LSN
Has anyone taken low molecular weight heparin to help their lymphodema ?
Are you taking it? Are you on a trial?
Hi lynora do you know anyone else on or been involved in a trial I would like to talk with them. And also anything you know or have heard about this. Thanks
I haven't heard of anything related to heparin/lymphoedema, which is why I asked if you were taking part in a trial. I can't really see how it can help lymphatics with it's anticoagulant effects.
I have been advised it has had positive results on others with lymphodema and therefore suggested I try it. I am not sure how it works on the lymph system but as lymph can clot also and the lymph system and venous system are one circular system then I can understand it may have an effect. The uk lymph expert will know the answer. I think he's making advances every day. I would love to talk with others that have used it. Of course every case is individual and I would imagine it depends on the cause and type of lymphodema.
If you are being advised by a UK expert (which one?), then you will be well informed. I know that a clot in lymph vessels is an incredibly rare occurrence. Has he mentioned how many 'subjects' have benefited and if they had lymphatic obstruction?
I have asked those very questions and more but have not had a response as yet to them. I will prob need to fly to London again for a 20 minute consultation to get the answers. And I'm afraid that would be the 3rd time and I can't really afford it again. I will keep trying through e mail and letters.
Hi lynora what makes you say clot in the lymph system is incredibly rare occurrence? Do you think that is possibly because we don't have the technology and medical expertise yet to prove it? Could it be anyone with an abnormal lymphoscintigraphy showing blockage of some sort has lymph clotting?
I have never heard of this type of treatment, but I don't think that this medicine can ever replace the nodes especially as thinning the blood can bring other problems, bigger than suffering from lymphoedema, in my opinion.
Not something that is used for lymphoedema treatment - possibly used if someone develops lymphedema following a deep vein thrombosis but this would be to treat the DVT not the lymphoedema
Hi support network. Perhaps check on your info. There have been cases where this has been trialled in treatment for lymphodema.
Hi KMDB. Just wondering if you were a member of the LSN?
I've had a brief trawl through various sites, but can't find any specific RCCT's relating to lymphoedema and heparin. Which UK expert do you think is researching this?
No you won't find anything on the web I have looked for hours. Prof Mortimer suggested I trial it for three months. Sorry I can't tell you anymore than that perhaps the Lsn can fill in the rest.
Well, if you do take part in the trial, I will look out for the results - as will many people - with much interest!
Hi Lynora, I hope I can shed some light on this. There is evidence now to suggest that Lymphoedema of the arm post breast cancer is not always due to axillary obstruction, but may be due to lymphangio-obliteration.of lymph collectors due to lymphangiothrombosis
Therefore hopefully a trail of low molecular weight heparin may help the thrombosis of lymphatic vessels and improve Lymphoedema. Its an exciting prospect, lets hope it will be very positive
Best wishes
Chris
Chris
Thank you that is a great answer and is pretty much what my letter says. But it's my leg not arm and the thrombus cause prob due to venous issue although we will never know for definate. Do you know where I can read articles on this or any patients that have done it? Are you a doctor? Thanks Kate
Hi Kate
No I am a Lymphoedema nurse, not a Dr. I have only a basic knowledge of these new techniques. However from what I understand if the lymphatic vessels have become thrombosed, then they become non functional and lympho-venous anastomosis may therefore not be an option. Obviously this can only be proved with lymphoscintigraphy and hopefully low dose heparin may possibly help the situation. It is an exciting new form of treatment, lets hope their are postive outcomes
Chris
Some of the literature I read and there was alot of reading before I got my stent done in Cyprus suggested that venous flow may also be an issue in post breast cancer patients and improving that might also improve lymphedema. There is new data emerging all the time it just takes along time. I remember the words of my doc he said years ago we wouldn't have put stents in arteries now we are doing it in veins also, I told him he needed to help educate the world. He said I needed to be patient and in ten years it would be out there in the world! Frustrating for me as I know loads about it know but it was a long haul! Open minds and thinking out the box brings great things!
Hi KMDB - we will ask Professor Mortimer his opinion and post his response when we get it.
Great please do. He is the man to ask.
Can you also please ask if there is any literature on it to date ie has he written any reports. Also how many it was trialled on and the outcome. I have asked all these questions myself and I can't afford to fly to London for the answers. So it would be fantastic if you could get them for me.
Hi KMDM Peter is away at the moment but will post his response when we get it
Hi KMDM
Peter has responded but is only able to say at the moment that
'I have started approximately three patients on low molecular weight heparin on the principle that some difficult lymphoedemas may be due to lymphatic thrombosis. Word has got about but I have got no follow up information yet'
So we will wait for him to feed back more when he feels he is in a position to.
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