PXD101

[Paul]

This is the name of a drug that I and one other ASPS patient have been treated with over here in the UK. It has given promising results in both of us, stopping the growth for 12-18 months. I was only on it for 8 months and came off it for a break a couple of months ago, with a view to starting again in the future. It is an anti-angionesis(??) drug, which stops the growth of blood vessels around the tumors. If anyone wants to know any more about this drug please post here or if you prefer for it to be in private feel free to contact me on mavs_1357@hotmail.com

[Yosef Landesman]

Dear Paul,

Welcome to iCureASPS!
Good news you are bringing to us regarding PXD-101. Is the clinical trial taking place at the Royal Marsden Hospital in England? I know that the drug is tested on patients with lymphomas, multiple myeloma and mesothelioma. Does the trial have a website containing useful information for those of us who may want to learn more, or want to join the trial?

In addition, can you please tell us if the drug only seems to stop the growth of existing tumors, or does it also reduce the size of existing tumors.

Best Wishes,
Yossi

[Elaine Anderson]

:)Dear Paul,

It is good to hear from you. My son's doctors (from Memorial Sloan-Kettering Cancer Center in New York City, NY, USA) (3-1/2 hours one-way from our home) believe that an anti-angoigensis ??(stopping new blood vessels) approach is a known positive treatment at this time. The hope is an ASPS vaccine. I have been told several times by his doctor that if an immediate intervention is needed, this would be the approach as Sloan Kettering does not yet have a vaccine available. Thankfully, Sean has had no treatment except surgery (which is a big deal also), but I believe this is the best course of action given his situation. Take care.

Elaine Anderson
Unionville, PA, USA

[Paul]

Sorry it has taken me so long to check the site and reply. I stopped the course of PXD101 a while ago now (maybe 8-9 months), this was mainly due to the appearance of brain mets. But to answer the comments and questions regarding the drug it is true that this type of drug is effective with sarcomas, it stops the growth of new blood cells and is a good way of buying some time. All in all it did not make me feel too bad at all. I took part in an extra trial whilst taking PXD101 and agreed to take it orally. This tended to make me sick for a while after swallowing the tablets however on my next scan some of my tumors were reduced by around 25%. This was probably due to the large quantities I took and would probably not be given in that high dosage when it came to using the drug commercially.

[Olga]

Just a note for the people who is looking for a trial - this drug's correct name is PDX101, it might be relevant for ASPS as it has been able to induce a stabilization for a year and to shrink some tumors in two ASPS patients from UK. In US it has the name Belinostat, look on the clinicaltrials.gov