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PTCL-NOS and Mundesine

IrynMaydin
Posts: 12
Joined: Jan 2016

I recently saw that Japan has approved the first drug EVER, specifically for the treatment of R/R PTCL-NOS. The articles said they conducted 19 clinical trials and were excited about the results. We're trying to find the trial results, but have been unsuccessful. We've reached out to our oncologist, as well as LLS and a variety of othet sources, but no one has been able to help us find this information. 

Does anyone know where we can get this info? I plan to reach out to the drug manufacturer, but I'm pretty sure it will be another dead end. 

Evarista
Posts: 256
Joined: May 2017

Since Mundesine is a brand name, not a lot comes up with that search term.  You'll do better following "forodesine".  At ClinicalTrials.gov, 14 studies come up.  Some are "Terminated" and some are "Completed".  I only looked at a few and they showed "No study results posted", but might be worth your going through the rest of them.  That may just be because the data has not been published/presented yet.  So keep looking back at that site for sure.  You could also check PubMed (https://www.ncbi.nlm.nih.gov/pubmed?otool=utswmlib) using the discover's name in the search field.  Enter as "Schramm V".  If articles related to the studies do come out (none yet), you can see the abstracts by clicking the link.  You will need someone with access to get the full article.  I will try to remember to check back occasionally and let you know if I see anything.  Good luck. 

Evarista
Posts: 256
Joined: May 2017

http://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.7542 and http://onlinelibrary.wiley.com/doi/10.1111/j.1349-7006.2012.02287.x/full

For the current Japanese study, search PubMed from time to time for the study leader: Kensei Tobinai 

po18guy
Posts: 993
Joined: Nov 2011

A drug that is approved in Japan is probably not available, even for off-label use, anywhere else. And, even if it is available, the treating facility and hematologist would have to agree to try it. As you know, T-Cell Lymphomas generally require several multi-agent regimens to eradicate them. The exception is those which are CD30 positive and respond well to Adcetris after relapse. You might visit the website and make contact at the T-CellLeukemia Lymphoma Foundation to see what options are available.

IrynMaydin
Posts: 12
Joined: Jan 2016

Thank you for the idea to search by discover and study leaders names.  I hadn't considered that and it's a great idea.

I reached out to the T-cell Leukemia Lymphoma Foundation. They basically told me to discuss with our oncologist.

While my husband is responding to Romidepsin, having relapsed after a short remission with Brentuximab, we know how quickly things can change. We need to come up with a Plan B, C, and D, and are trying to leave no stone unturned. 

Thank you both for taking the time to help us. It's comforting to know we're not alone.

 

 

po18guy
Posts: 993
Joined: Nov 2011

If you have an oncologist, I strongly suggest that you seek out the best and brightest hematologist that you can find. There is a substantial difference between them. And, not just a hematologist, but one who specializes in T-Cell Lymphomas. Nearly all hematologists have much experience with B-Cell Lymphomas, but very little if any with T-Cell Lymphomas, which are a world apart. It is just that important, as you know.

Also, there is a dedicated transplant forum at www.cancerforums.net. Quite a bit of experience there.

IrynMaydin
Posts: 12
Joined: Jan 2016

We went to MSKCC for a 2nd ooinion after his initial diagnosis. We wanted to confer with Horwitz, but instead they set us up with Strauss. We were sorely disappointed as he offered nothing more than text book knowledge of the disease. We were willing to travel back there if they would set is up with Horwitz, but they refused.

We've since relocated from SC to AZ. We considered trying to get an appt with Shustov, but the problem with the world renowned T cell specialists is they are often quite busy and have limited time to treat patients. We need a specialist who is willing and able to make sufficient time for us.

We've asked our oncologist to recommend a T cell specialist he feels he can work with. We know how rare this disease is and realize we need the best-of-the-best to help us find our way to a cure. The local oncologists/hematologists just don't have the experience or expertise needed to tackle this beast of a disease. 

I'll check out the SCT forum. Thanks so much for all the time you've taken with us. Your experience and knowledge have been invaluable to us.

po18guy
Posts: 993
Joined: Nov 2011

Of course, I highly recommend Dr. Shustov, and even though he is busy, he likes to stay "three steps ahead" of the cancer - just as you do.

IrynMaydin
Posts: 12
Joined: Jan 2016

You can't ask for more than that!

IrynMaydin
Posts: 12
Joined: Jan 2016

PO18GUY-we're considering trying to get an appt with Shustov. I'm anticipating that they may assign us to someone else, like they did at MSKCC when we wanted to see Horwitz, but they set us up with Strauss instead. If we run into the same issue in Seattle, might you be able to reach out to Shustov to ask if he'll take us. I'm trying to get all my ducks in a row before I make the call. 

po18guy
Posts: 993
Joined: Nov 2011

I have never heard of anyone being referred to another.

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