PTCL-NOS and Romidepsin

I began Romidepsin in March, 2009, in the clinical trial. I had relapsed immediately after primary therapy of CHOEP-14 plus GVD. I ended up receiving Romidepsin for about 5 years total, 4 1/2 of which were in full response. Keep in mind that I was one of the exceptions who repsonded to the drug long term. As it is with essentially all cancer drugs, response rates to any given therapy run from about 25-33% of patients. Once the trial was completed, I was asked to remain in the long-term study of the drug. After about 1 year in the long term study, the dosing frequency (strength remained the same) was reduced to day 1 and day 15 of the 28 day cycle. Basically, an infusion every two weeks. About one year after that, treatment was reduced again to a single monthly infusion on day 1 of the cycle.

This continued until late in 2013, when various symptoms began to appear, indicating a second relapse. Dosing was increased back to the standard day 1, day 8 and day 15, with a week off. In my case, the lymphoma has mutated into two types, with the NOS remaining, but AITL also appearing. One of the lymphomas respoded, while the other did not. I failed three single agent drugs after that, including Pralatrexate, Belinostat and the trial drug Alisertib.

What finally placed me in full response in preparation for a translant was a new combination of older drugs called TREC. In cases of T-Cell Lymphomas, that consists of Treanda (Bendamustine), Etoposide and Carboplatin. It is an alternative to ICE, is less toxic, as well as being administered on an out-patient basis, rather than in the hospital, as is the case with ICE. Bear in mind that this was my 5th salvage regimen.

I had the same difficulty finding a donor as there were none acceptable in 2009 and none still in 2015. So, my two children were tested and both were acceptable half-matches for a haploidentical transplant.  

IrynMaydin said:

Thank You, PO18GUY!

I can't thank you enough for your detailed response. It's exactly the information we were looking for.  Do you have any idea of the status of the other long term Romi user? 

 

I read your bio previously and again this morning. Your journey has been an incredible one. Your tenacity and courage are tremendous. Thank you for taking the time to help in our own journey to wellness. 

The patient in France who was on it longer than I either relapsed or went to transplant, as far as I know. He was one of Dr. Bertrand Coiffier's patients, and the good doctor has since retired. If you go to clinicaltrials.gov and search PTCL, you will get a huge list of all known active and completed trials for T-Cell Lymphomas. Many new combinations are being tried, with Adcetris, Romidepsin and Pralatrexate beng mixed in with older combinations. Some of them show great promise.

As for transplant, does your husband have any children, whether with you or an ex? There is a fairly good chance that one of them might be a match. Where are you located, state or nation-wise? As to my bio, there is a lot more to it now, actually. A true nightmare medical resumé that is completely survivable.

Pralatrexate is a good but tough drug. Romidepsin has substantial side effects, but works fabulously for some, while Belinostat is far easier. And clinical trials involving older regimens such as CHOP combined with these newer drugs look very promising. What they are seeking is a synergistic response and the perfect combo will never exist. What we need is the perfect combo tailored to individual patients, since T-Cell Lymphomas are an extremely varied set of cancers. I remember something to the effect that Pralatrexate followed by Belinostat can be very effective, as the Pralatrexate is believed to sensitize the tumor cells to Belinostat. Thus, the combo is more effective than either drug sepearately. I was fighting two types and only one would respond. In the T-Cell Lymphoma world, we must take advantage of whatever exists, despite low response numbers. Someone has to respond, and it might as well be us.

As to transplant, T-Cell Lymphomas love to relapse. They do not mind mutating. Honestly, a stem cell transplant is a very risky proposal, but each relapse is exponentially more difficult to combat. Mine was approaching the point of impossibility and we had run out of lymphoma drugs, so transplant it was.