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PTCL-NOS and Romidepsin

IrynMaydin
Posts: 12
Joined: Jan 2016

My husband has been battling PTCL-NOS for a year and a half now. He's been refractory to CHOEP, relapsed on Brentuximab Vedotin, and is now taking Romidepsin. Since he relapsed, they're saying an auto stem cell transplant is not recommended. There are no matches for him on the donor list for an allo transplant. We're waiting on results on whether or not his daughter is a match. 

Has anyone had long term results with Romidepsin? If so, do they continue with a weekly infusion at full strength, or at some point, do they switch to maintenance dosing? Is the maintenance dosing still a weekly infusion?

po18guy
Posts: 1011
Joined: Nov 2011

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
Posts: 12
Joined: Jan 2016

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. 

po18guy
Posts: 1011
Joined: Nov 2011

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.

IrynMaydin
Posts: 12
Joined: Jan 2016

We search the clinical trial database regularly. While there are a number of clinical trials, none are with drugs that have what we'd consider effective and durable.  We're hopeful the Romi will keep him in remission long enough for some super drug to come to market. A pie-in-the-sky thought process, for sure, but without hope, we have nothing.

My husband's daughter is being tested for a match. We're waiting to hear the results. My husband has 2 daughters with his late wife, who battled lung cancer for 10 years. She passed cancer free; it was the treatments that ultimately killed her. The aggressive treatments weakened her heart and caused her demise. His oldest daughter has autism so she isnt being tested at this point. His family is no stranger to cancer and his diagnosis is a tough pill to seallow .Even if his youngest daughter is a  match, the data on SCT is controversial, even though it's considered a standard of treatment. My husband has a gut feeling he wouldn't survive a transplant. Perhaps it's just a fear, but when your gut speaks, its usually a good dea to listen. The international lymphoma conference was held in June this year and there was an informative brief on PTCL and SCT. They concluded that approx 30% were cured with a SCT, and went so far as to say it could be as high as 50%. Some pretty promising numbers, if I I say so myself.  I'm hoping articles such as this will help alleviate my husband's fears regarding SCT. Of course, if his daughter isn't a match, it takes this option off the table for now. 

We're in Tucson, AZ.

We read your bio when my husband was initially diagnosed and read your updates a few days ago. Your journey has been an inspiration to us and has helped us hang on.  We even have a copy of your bio printed out and it's in our folder of reference material! You're helping people even when you don't know it and we feel blessed to have crossed paths with you.

po18guy
Posts: 1011
Joined: Nov 2011

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.  

IrynMaydin
Posts: 12
Joined: Jan 2016

Thanks, PO18GUY!

I'm tucking away the tidbit on Pralatrexate/Belonistat.

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