Brentuximab, any experience

Hi again Norseman44 Brentuximab is used a lot across the various NHLs…… I have not had it.

You can put Brentuximab into the search  tool near the top and select ‘Anywhere’ and this will bring up all the older posts, have a look through them and as always you can hit reply to any post to see if the member is still using the site.

Yes Ive had it. It worked for me . After 1 treatment 90% of lesions went,after treatment 2 95% gone, after 4 treatments all gone. I elected to have the 16 treatments. Side effects were minimal with just peripheral neuropathy. After a year it had returned with a mswat of about 6. 1 plaque appeared during Brentuximab and was biopsied ..it had a low CD30 of about 3%. Brentuximab works best with the t cells in the lesions having 15-20% CD30.

In England the Cancer Fund only allows individuals to have 16 treatments which must be taken in one treatment cycle. Despite it being very effective for my CTCL  I am now facing having less effective treatments because of cost.

Hi Alpo24 I see it's your first post on the group so welcome.

I was diagnosed with my type of CTCL (Mycosis Fungoides) back in 1999 when I was 44 ..... so I unfortunately know this journey rather well.