Peripheral Tcell Lymphoma

rsp_1970

I was diagnosed with Stage 3 Peripheral Tcell Lymphoma. I have had 4 rounds of CHOP and my latest pet scan shows 99.9% remission. I have two more treatments and one last pet scan to see results. I will then go for an evaluation for a stem cell replacement. Has Anyone out there gone through this similar process? Any stories or advice? 

po18guy

Good response

Do you know your sub-type? There are a minimum of 27 sub-types of peripheral T-Cell Lymphoma. There is one in particular which responds well to CHOP, but most types do not repond all that well. If I might, where are you being treated? The probem with CHOP is that it is a "vintage" regimen for B-Cell Lymphomas and T-Cell Lymphomas can be radically different - even from each other.

Having said that, the proof is in the pudding. If you can achieve remission, an autologous stem cell transplant is quite often advised. If you cannot reach remission, it becomes a crossroad. Do you then seek an allogeneic trandplant, or do you take the research path and enter into one of the clinical trials? There is also CAR-T for PTCL in trials, last I heard.

For resources, please consider the T-Cell Leukemia Lymphoma Foundation which was established by the hematologist who has saved my life at least three times. There is also the Leukemia and Lymphoma Society. Their fact sheet on T-Cell Lymphomas is excellent. The Lymphoma Research Foundation also is a great resource. Dr. Andrei Shustov of Fred Hutchinson/Seattle Cancer Care Alliance has produced a series of 15 minute YouTube videos that are very imformative.

https://www.youtube.com/watch?v=mRhp3O1F-yc&t=26s

https://www.youtube.com/watch?v=Qbn6H9WKCUs&t=43s

https://www.youtube.com/watch?v=Qbn6H9WKCUs&t=57s

https://www.youtube.com/watch?v=nz3N9JIYVz8&t=27s

https://www.youtube.com/watch?v=6HjoY_vY3aE&t=987s

https://www.youtube.com/watch?v=PVS1iWKwQYA&t=12s

 Are you in the US? Do you have a second opinion? If not, I strongly urge you to seek one - preferably at a National Cancer Institute designated comprehensive cancer center. Doing that sacved my life by connecting me with a brilliant research hematologist. Find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

Some history. Since 2008, I have had Peripheral T-Cell Lymphoma NOS three times. I have had Angioimmunoblastic T-Cell Lymphoma once. I have also had 20q deletion Myelodysplastic Syndrome (precursor to Acute Myeloid Leukemia) in my marrow. After several remissions and relapses, I had all three cancers simultaneously in 2014-2015. At that point, I had received 12 drugs in 6 regimens, including two clinical trials and one long-term study. An experimental regimen of Bendamustine, Etoposide and Carboplatin placed all three cancers in remission after only two infusions. I then went on to a moderate intensity haploidentical allogeneic stem cell transplant. I developed Graft-versus-Host-Disease (GvHD), first acute and then chronic. To combat that, I have undergone 6 additional therapies, two of them in clinical trials.

rsp_1970

po18guy said:

Good response

Do you know your sub-type? There are a minimum of 27 sub-types of peripheral T-Cell Lymphoma. There is one in particular which responds well to CHOP, but most types do not repond all that well. If I might, where are you being treated? The probem with CHOP is that it is a "vintage" regimen for B-Cell Lymphomas and T-Cell Lymphomas can be radically different - even from each other.

Having said that, the proof is in the pudding. If you can achieve remission, an autologous stem cell transplant is quite often advised. If you cannot reach remission, it becomes a crossroad. Do you then seek an allogeneic trandplant, or do you take the research path and enter into one of the clinical trials? There is also CAR-T for PTCL in trials, last I heard.

For resources, please consider the T-Cell Leukemia Lymphoma Foundation which was established by the hematologist who has saved my life at least three times. There is also the Leukemia and Lymphoma Society. Their fact sheet on T-Cell Lymphomas is excellent. The Lymphoma Research Foundation also is a great resource. Dr. Andrei Shustov of Fred Hutchinson/Seattle Cancer Care Alliance has produced a series of 15 minute YouTube videos that are very imformative.

https://www.youtube.com/watch?v=mRhp3O1F-yc&t=26s

https://www.youtube.com/watch?v=Qbn6H9WKCUs&t=43s

https://www.youtube.com/watch?v=Qbn6H9WKCUs&t=57s

https://www.youtube.com/watch?v=nz3N9JIYVz8&t=27s

https://www.youtube.com/watch?v=6HjoY_vY3aE&t=987s

https://www.youtube.com/watch?v=PVS1iWKwQYA&t=12s

 Are you in the US? Do you have a second opinion? If not, I strongly urge you to seek one - preferably at a National Cancer Institute designated comprehensive cancer center. Doing that sacved my life by connecting me with a brilliant research hematologist. Find the nearest center here: https://www.cancer.gov/research/infrastructure/cancer-centers/find

Some history. Since 2008, I have had Peripheral T-Cell Lymphoma NOS three times. I have had Angioimmunoblastic T-Cell Lymphoma once. I have also had 20q deletion Myelodysplastic Syndrome (precursor to Acute Myeloid Leukemia) in my marrow. After several remissions and relapses, I had all three cancers simultaneously in 2014-2015. At that point, I had received 12 drugs in 6 regimens, including two clinical trials and one long-term study. An experimental regimen of Bendamustine, Etoposide and Carboplatin placed all three cancers in remission after only two infusions. I then went on to a moderate intensity haploidentical allogeneic stem cell transplant. I developed Graft-versus-Host-Disease (GvHD), first acute and then chronic. To combat that, I have undergone 6 additional therapies, two of them in clinical trials.

I am from the Chicago area.I

I am from the Chicago area.I have been diagnosed with Angioimmunoblastic Tcell Lymphoma. I have had to opinions which both advised the CHOP regimed and it has been sucssful through four cycles. After cyle 6 will discuss the autologous stemm cell transplant.

 

po18guy

rsp_1970 said:

I am from the Chicago area.I

I am from the Chicago area.I have been diagnosed with Angioimmunoblastic Tcell Lymphoma. I have had to opinions which both advised the CHOP regimed and it has been sucssful through four cycles. After cyle 6 will discuss the autologous stemm cell transplant.

 

Sounds good.

Some T-Cell patients do well on CHOP and it is great that you are among them. Back in 2008, I received it only if Etoposide was added. That placed me in full radiological response. So did the GVD which immediately followed. However, relapse was immediate and transplant was either not recommended (auto) or unavailable (allo). Clinical trials were the option avaiable to me at that time. Let us know of your progress, if you would be so kind.