Phase 1 Pazopanib & Vorinostat Clinical Trial NCT01339871

[Bonni Hess]

Dear ASPS Community Friends,
I am in e-mail communication with the father of a young woman who is an ASPS patient. Unfortunately neither the father or daughter participate on this Board, but I follow the Caring Bridge and Facebook updates for the young woman. The young woman has been participating in a Phase 1 combination Pazopanib and Vorinostat Clinical Trial at MD Anderson for the past six months and has encouragingly had a very successful response to the medications thus far with stabilization of her disease and signifcant tumor shrinkage/disappearance (one lung met completely disappeared and a spinal tumor shrunk 80%!). Pazopanib is a targeted anti-angiogenic Tyrosine Kinase Inhibitor (TKI) that is designed to block the growth of blood vessels that supply nutrients needed for the tumor growth. This may prevent or slow the growth of cancer cells. Vorinostat is designed to cause chemical changes in different groups of proteins that are attached to DNA (the genetic material of cells), which may slow the growth of cancer cells or cause cells to die. I will continue to closely follow the young woman's Clinical Trial experience and results with this promising drug combination, and will keep the Board updated. In the meantime, if you are interested in researching information about the Trial or pursuing participation in it, the Trial information can be accessed by going to the following link: http://clinicaltrials.gov/ct2/show/NCT01339871
With special caring thoughts and continued Hope,
Bonni

[Olga]

Thank you Bonni, it is a very interesting trial as I know of few other sarcoma cases when patients had partial responses to the Pazopanib - it may give the broader appeal to that drug for the company to be interested in its development. As far as I understand, pazopanib is a drug from the same family as cediranib (TKI), and I won't be able to grasp the difference.

[Bonni Hess]

Hi Olga,
From my research and following of a couple of other ASPS patients who are currently taking Pazopanib, I think that Pazopanib is thankfully providing some success and offering another possible effective systemic treatment option for treating ASPS. It would certainly be helpful and beneficial to everyone who is following/considering treatment with this promising new drug if the ASPS patients who are currently taking Pazopanib and/or participating in combination Pazopanib Trials would post their information on this Board and share their Pazopanib treatment experience and results because shared anecdotal treatment information remains one of the most vitally important resources that we all have in fighting this extremely rare disease. Shared information is a gift that we can all give each other, and one which may help to save precious Lives.
With special caring thoughts and continued Hope,
Bonni

[Johannes]

Hi,

Thanks, Bonni, for this information on the Pazopanib & Vorinostat trial experience - a spinal tumour that shrunk 80%? That's fantastic. Do you know when this woman was enrolled in the trial, and do you have any information about side effects?

I don't have any other information about ASPS patients' experiences with Pazopanib; I can only confirm that Cediranib and Pazopanib seem to be very similar - this is what the oncologist/pharmacist at Elisa's hospital told me last time (because she couldn't get Cediranib for a patient, she decided to try Pazopanib, according to her the drug that it is most similar to Cediranib in the TKI family).

Do you know what the reasoning was for trying this combination with Vorinostat? I don't know much about Vorinostat, and I am wondering whether there is a reaction that was expected to happen, especially in the case of this ASPS patient. In other words, do you think that Pazopanib is the "strong" drug, or is it the combination?

Best,
Johannes

[Bonni Hess]

Hi Johannes,
Unfortunately I have only limited information about this young woman's combination Pazopanib and Vorinostat Trial experience since she does not post very much specific information on her Facebook site and her father's Caring Bridge updates and e-mail responses to me are very infrequent with limited information. I have tried to encourage him to post and participate on this Board, but discouragingly he has thus far not responded to/ or followed through on my requests for him to do so.
From the limited information that I have been able to obtain, I think that the young woman started the Trial in October.The only side effects of the treatment that the father has mentioned to me is that the medications make his daughter very tired. I don't know what the rationale is for using this drug combination, but the father told me that Vorinostat is a drug which has apparently shown success with other types of cancer and has been used to treat liver tumors. I will post anymore information that I am able to find on this combination treatment, and will continue to Hope that any ASPS patients who are participating in this Trial, or their family members, will share their treatment and results information on this Forum so that we can all learn from each other in our shared battles with this very challenging disease.
With special caring thoughts and continued Hope,
Bonni

[Bonni Hess]

Dear ASPS Community Friends,
The ASPS patient who I follow who has been participating in the MD Anderson Pazopanib/Vorinostat Clinical Trial for the past year since October 2011 is thankfully continuing to have an apparent successful response to the drugs with continued stable disease and additional shrinkage of her spinal tumor. This is very encouraging news, and brings Hope that this drug combination may provide another promising treatment option for ASPS patients. I will continue to follow this patient's treatment experience and keep the Board updated with any new information that I find.
With special caring thoughts and continued Hope,
Bonni

[Olga]

Thank you Bonni for the continuing updates on this trial. It would have been very interesting to know if there are any other responding ASPS patients on it there.

[Bonni Hess]

Hi Olga,
I agree that it would be very helpful and beneficial to everyone in the ASPS Community to know if there are any other ASPS patients participating in this combination Pazopanib/Verinostat Trial, and if they are having a successful response to it, as well as the status of those patients who are currently taking just Pazopanib of which I know there are several, but very sadly, unfortunately, and inexplicably, none of these patients seem willing to share their anecdotal treatment information and results, at least on this Board.
With special caring thoughts and continued Hope,
Bonni