Peripheral T-cell lymphoma NOS diagnosis

Crystalyn717 · November 2014

My 37 year old husband was just diagnosed with PTCL NOS after being sick for five months. He's lymphoma is presenting in the lungs. His Dr. is recommending CHOEP followed by an autologous stem cell transplant. We will meet with his doctor on Thursday and he will potentially start treatment on Friday. I'm looking for anyone who knows anything about this treatment plan. I would love to hear any input you may have. We are very nervous as to be expected. I am also 29 weeks pregnant with our first baby so this has really be a stressful and emotional time. Thanks in advance.

Max Former Hodgkins Stage 3 · November 2014

rare

Crystalyn,

I'm terribly sorry about your husband's illness , and the fact that the disease hit during your pregnancy. All of the T-cell lymphomas are relatively rare, but it sounds like your doctor has experience with it. NOS means "not otherwise specified," which means that his is a form of it not easily pigeonholed.

Is his chemo possibly CHOP ? If not, it is probably the drug combination known as "CHOP" with a fifth drug added, and that drug is mostly likely Etoposide. I am NOT certain of this, but it sounds probable, since it is commonly used in prepartion for stem cell transplants. Your doctor's nurse surely would be glad to tell you what the drugs are over the phone.

CHOP is very common; it is the most common first-line therapy for several NHL strains, most of which are "B-cell" diseases. CHOEP I am not certain of. There are a few T-cell patients who write here at times, and hopefully they will respond soon. I myself had a type of HL, and did mot receive CHOP. If you go to chemocare.com you will find a lot of information regarding all FDA-approved chemo drugs. I do recommend that you first verify exactly what "choep" is, however.

UPDATE: I did a little further digging, and CHOEP is chop with Etoposide added, and it is a recent combination for T-cell NHL, reportedly getting good results. Therefore any CHOP patient could comment on side-effects. Etoposide id also a component drug in the ICE combination therapy, and is sometimes given in megadoses in preparation for SCT. This usually requires hospitalization, so I suspect he may be admitted for his infusions.

Wishing him a speedy recovery, and please safeguard your own health as well,

Max

illead · November 2014

Max Former Hodgkins Stage 3 said:
rare
Crystalyn,

I'm terribly sorry about your husband's illness , and the fact that the disease hit during your pregnancy. All of the T-cell lymphomas are relatively rare, but it sounds like your doctor has experience with it. NOS means "not otherwise specified," which means that his is a form of it not easily pigeonholed.

Is his chemo possibly CHOP ? If not, it is probably the drug combination known as "CHOP" with a fifth drug added, and that drug is mostly likely Etoposide. I am NOT certain of this, but it sounds probable, since it is commonly used in prepartion for stem cell transplants. Your doctor's nurse surely would be glad to tell you what the drugs are over the phone.

CHOP is very common; it is the most common first-line therapy for several NHL strains, most of which are "B-cell" diseases. CHOEP I am not certain of. There are a few T-cell patients who write here at times, and hopefully they will respond soon. I myself had a type of HL, and did mot receive CHOP. If you go to chemocare.com you will find a lot of information regarding all FDA-approved chemo drugs. I do recommend that you first verify exactly what "choep" is, however.

UPDATE: I did a little further digging, and CHOEP is chop with Etoposide added, and it is a recent combination for T-cell NHL, reportedly getting good results. Therefore any CHOP patient could comment on side-effects. Etoposide id also a component drug in the ICE combination therapy, and is sometimes given in megadoses in preparation for SCT. This usually requires hospitalization, so I suspect he may be admitted for his infusions.

Wishing him a speedy recovery, and please safeguard your own health as well,

Max

Hi Crystalin

I am so sorry for what you are going through right now. It is definitly not good timing, but no matter when, it is never a good time. We all know what a shock it is to hear news like this and want you to know that we are here for you and your husband. Michelle and Kyle are a young couple who are very encouraging. Kyle has the same thing as your husband and is now going through his 2nd SCT. I hope Michelle will have time to write but she is not able to write much while Kyle is undergoing his treatment. You can read about their story though if you go to "search csn members" (top right of this page) and type in mchantal. Kyle is doing well as far as we know, it is just that they are devoting most of their time to Kyle's healing. Researchers are making great strides with lymphoma, so please take comfort in that. My husband has a rare form of lymphoma that is basically incurable but in the short time he has been fighting it, they have found new drugs that are keeping him in remission and healthy. So there is much hope out there. Take one day at a time and try to stay positive. And as I said before we are here and please know that you can share any feelings etc. and we totally understand. We have all been there.

Thinking about you and hoping for the best, Becky

po18guy · November 2014

Aside from a clinical trial, CHOEP is a good start

Sorry to welcome you here under these circumstances. T-Cell Lymphomas are a completely different breed from B-Cell, and the "NOS" category is simply a catch-all that includes a very wide variety of substantially different T-Cell malignancies. At this time, there is nothing else to call them, and they are not classifiable. When I was diagnosed back in 2008, I received four cycles of CHOEP-14 (fourteen day cycle), followed by four cycles of GND (Gemcitabine, Doxil and Navelbine). I managed to work through the CHOEP, but it was kicking me toward the end. I styed home with the GND, as that was rather rough - especially toward the finish.

It sounds like you have a doctor/hematologist who knows what they are doing. And, an autologous transplant at first remission is a good chance for a long-term remission. With T-Cell Lymphomas, there is occasionaly talk of a cure, but mostly we seek a long-term remission, as it is very likely to relapse. Mine has relapsed three times afrer the initial remission.

There is a newly formed foundation to aid T-Cell patient and caregivers: http://tcllfoundation.org/

The thing is that one really needs a T-Cell pecialist, as an awful lot of hematologists and pathologists will never have seen a T-Cell Lymphoma before. A second opinion in this regard saved my life. Here is a list of known T-Cell specialsts who may be consulted with for advice, or for a second opinion: http://tcllfoundation.org/resources/

I would ask doctor what their "plan B" is, as T-Cell Lymphomas may find their way around any given treatment regimen. I am currently in my 5th regimen and 11th drug. All the best to the two (three!) of you.

MChantal · November 2014

Hello Crystalyn

Hello Crystalyn,

As the beautiful Becky mentioned in her comment, my fiance Kyle was diagnosis back in April 2013 with PTCL-NOS; approx. 70% of his bone marrow was "infected" with this lymphoma. None of his organs were involved yet, he was still categorized as a Stage IV considering it spread throughout his bone marrow. Like your husband, he received 6 rounds of CHOEP followed by an autologous stem cell transplant (SCT). Prior to the SCT, he was in complete remission in which, an autologous SCT was prime in his situation. He finished in SCT in Oct 2013. Unfortunately, this past August 2014 the cancer returned. He has now received 3 rounds of GVP chemotherapy and we just found out yesterday after having a bone marrow biopsy last week...there is no evidence of cancer in his body! He still must receive another SCT only to be an allogeneic transplant (donor) simply because, this PTCL-NOS is so rare and aggressive as we have found it. There is so many categories and subtypes in PTCL-NOS in terms of their symptoms, onsets, and response rate to therapy; as you can read from some personal experiences here.

Keep the faith and hope. That has gotten Kyle and I this far. Remember, what you read on the internet as well, is based on a broad spectrum of individuals, it does not include the outliers. Your husband is young, he has that on his side and of course, the fact that you all are expecting your first child is the will to thrive into remission and beat this cancer.

You can read more of a detailed experience on Kyle website if you are interested: http://www.caringbridge.org/visit/kyleschneider

My best,

Michelle

illead · November 2014

MChantal said:
Hello Crystalyn
Hello Crystalyn,

As the beautiful Becky mentioned in her comment, my fiance Kyle was diagnosis back in April 2013 with PTCL-NOS; approx. 70% of his bone marrow was "infected" with this lymphoma. None of his organs were involved yet, he was still categorized as a Stage IV considering it spread throughout his bone marrow. Like your husband, he received 6 rounds of CHOEP followed by an autologous stem cell transplant (SCT). Prior to the SCT, he was in complete remission in which, an autologous SCT was prime in his situation. He finished in SCT in Oct 2013. Unfortunately, this past August 2014 the cancer returned. He has now received 3 rounds of GVP chemotherapy and we just found out yesterday after having a bone marrow biopsy last week...there is no evidence of cancer in his body! He still must receive another SCT only to be an allogeneic transplant (donor) simply because, this PTCL-NOS is so rare and aggressive as we have found it. There is so many categories and subtypes in PTCL-NOS in terms of their symptoms, onsets, and response rate to therapy; as you can read from some personal experiences here.

Keep the faith and hope. That has gotten Kyle and I this far. Remember, what you read on the internet as well, is based on a broad spectrum of individuals, it does not include the outliers. Your husband is young, he has that on his side and of course, the fact that you all are expecting your first child is the will to thrive into remission and beat this cancer.

You can read more of a detailed experience on Kyle website if you are interested: http://www.caringbridge.org/visit/kyleschneider

My best,

Michelle

Such good news

Hi Michelle and Kyle,

I just read the news on Caringbridge (I was about ready to call in the troops) . I posted there also. We are so excited and happy for you both Hang in there and onto each other for the SCT. Know Kyle will breeze through it (well....maybe not exactly breeze). Keep us posted when you can. Bill got his last CT results a few weeks ago and no MCL. So far so good.

Always in our thought and prayers,

Becky & Bill

Hi to you Crystalyn,

Sorry to use your thread to write to Michelle. I sure hope things are going well for your husband and that you are able to deal with this. You got some good info from Poguy and Michelle, so hope that helps to know that others know what an ordeal you are going through and have such encouraging outcomes.

Take one day at a time and know we all are here, Becky

amanda_christy · November 2014

illead said:
Such good news
Hi Michelle and Kyle,

I just read the news on Caringbridge (I was about ready to call in the troops) . I posted there also. We are so excited and happy for you both Hang in there and onto each other for the SCT. Know Kyle will breeze through it (well....maybe not exactly breeze). Keep us posted when you can. Bill got his last CT results a few weeks ago and no MCL. So far so good.

Always in our thought and prayers,

Becky & Bill

Hi to you Crystalyn,

Sorry to use your thread to write to Michelle. I sure hope things are going well for your husband and that you are able to deal with this. You got some good info from Poguy and Michelle, so hope that helps to know that others know what an ordeal you are going through and have such encouraging outcomes.

Take one day at a time and know we all are here, Becky

Hi Becky and Bill

So happy that Bill's CT results were good. Happy for u guys. Been very stressed of late waiting for results of my CT Scan after 3cycles of ABVD..... (Stage 1A HL) Never thought it cld b this hard. 2moro i get results. so scared!

Im always reading ur posts and silently rooting for u 2. Ur a truly inspirational couple :-) Sorry i havent been in touch more often but i struggle expressing myself of late; must b chemo brain!

Warm wishes,

Amanda

Peripheral T-cell lymphoma NOS diagnosis

Comments

Discussion Boards