HEAL trial: A lymphoedema nurse I sometimes see told me... - LSN

LSN

5,706 members2,635 posts

HEAL trial

sleeviejeebies profile image
4 Replies

A lymphoedema nurse I sometimes see told me about the HEAL trial that's currently underway in the US, so I thought I'd share the info. Apparently researchers at Stanford University are investigating an anti-inflammatory (acebilustat) for lymphoedema treatment and it has shown promise in improving skin thickening, reducing swelling and even repairing damaged lymphatic pathways. Obviously, even if it does work and the side effects aren't too terrible, it will be years before it gets to market - but interesting nonetheless. There's a video here: youtube.com/watch?v=2mUXh7P...

Written by
sleeviejeebies profile image
sleeviejeebies
To view profiles and participate in discussions please or .
Read more about...
4 Replies
CCT67 profile image
CCT67

Just to add that this trial is limited to upper extremity Secondary Lymphoedema.

It’s still very early days bearing in mind his long 3 stage medical trials tske. Fingers crossed this trial gets further than the Ubenimex trial did!

sleeviejeebies profile image
sleeviejeebies in reply to CCT67

Whilst this is true, it is not because the researchers do not believe that the drug will not help patients with lower extremity or primary lymphoedema but because patients with secondary upper extremity lymphoedema are most similar as a group, and therefore are easier to study (and it is hoped that the process will be quicker). In fact, because the drug has already shown promise, the FDA has allowed an Expanded Access Program to be set up, which allows patients with lymphoedema in the leg to use the drug in a clinical setting whilst not actually participating in the trial. Researchers will still be able to observe the results in this group of patients of course. There's an update video here: youtube.com/watch?v=bTCf7cz...

CCT67 profile image
CCT67 in reply to sleeviejeebies

Thanks. I’m aware of that being well acquainted with Stan Rockson’s work and preliminary findings of this particular trial. Hopefully beneficial an extend to Primary as he think it will. He was equally optimistic during early stages of the Ubenimex trial which was a big disappointment in the end hopefully this time a much better outcome

sleeviejeebies profile image
sleeviejeebies in reply to CCT67

Oh, that's a shame. Let's hope this has a better outcome, as you say.

You may also like...

LVA surgery trials on NHS in Wales

Travelling abroad with lymphoedema

I have had lymphoedema in my left leg for 4 years and wear compression every day. I’m going abroad...

soreness with lymphoedema

with lymphoedema, could this be something else, do you get tissue damage with lymphoedema? nothing...

How does it feel to have lymphoedema in your feet?

Hi. My son is three years old and has primary lymphoedema in both feet (Milroys). He is always...

Use of compression pumps

Hello, I’m new to the group. I have lymphoedema, has anybody had any experience using the...