Peripheral T cell NOS Non Hodgkins lymphoma

michellelemon

Anyone out there with this? My father was diagnosed with this 5 months ago - stage 3 - no organs involved thus far - just finished 5th treatment chemo (CHOP) - handling it fairly well - regression in all of his nodes - 6th round will be in early January, 3 weeks later a CAT scan to see where we are - and he is expected to go through a stem cell (autologous) transplant soon after. Just seeing if anyone has experience with this... Thanks!

sparkling

WoW! I finally found someone
WoW! I finally found someone who has the same diagnosis as my husband! How old is your Dad? I assume he is finished with CHOP and has had a scan, how did he do?

My husband was diagnosed in June09, 6 rounds of CHOP. The scans showed it the mass on the pancreas only shrunk less than 10%. He was already treated with the largest possible dose of CHOP, so no option there. He also had Thyroid cancer 3 months prior to this diagnosis. He doesn't qualify for any clinical trials since having 3 different cancers.

So, how is Dad doing now?

Janie

natalie14

Peripheral Tcell lymphoma
I am a 28-year old mother and was just told I had relapsed with Peripheral Cutaneous TCell Lymphoma. Last year I completed my eighth round of CHOP chemo and am now just told I have to go through an autologous stem cell transplant. I AM TERRIFIED!!! They told me it is a 50% chance of cure. Natalie

michellelemon

sparkling said:

WoW! I finally found someone
WoW! I finally found someone who has the same diagnosis as my husband! How old is your Dad? I assume he is finished with CHOP and has had a scan, how did he do?

My husband was diagnosed in June09, 6 rounds of CHOP. The scans showed it the mass on the pancreas only shrunk less than 10%. He was already treated with the largest possible dose of CHOP, so no option there. He also had Thyroid cancer 3 months prior to this diagnosis. He doesn't qualify for any clinical trials since having 3 different cancers.

So, how is Dad doing now?

Janie

sorry I am so late in my response!!
How is your husband?? I pray that he is hanging in there! I know the feeling - it is a rare one... My Dad is 73 and is currently undergoing high dose chemo prior to a stem cell transplant in a few days after achieving remission afer 6 rounds of CHOP- we are in the midst of it and much remains to be seen..
let me know what is going on.... one thing I was told is that ICE chemo can be used for this type if CHOP does not attain remission...let me know!

michellelemon

natalie14 said:

Peripheral Tcell lymphoma
I am a 28-year old mother and was just told I had relapsed with Peripheral Cutaneous TCell Lymphoma. Last year I completed my eighth round of CHOP chemo and am now just told I have to go through an autologous stem cell transplant. I AM TERRIFIED!!! They told me it is a 50% chance of cure. Natalie

Hi Natalie
I pray all is well with you! My father is in the midst of a stem cell transplant - he just completed day 3 of his 6 day high dose chemo regimin and his transplant is Monday - he is Ok right now although it will get a little messy next week when it hits him, we know. But I do not think it is to be terrified about... one day at a time and all will work out... I am so late in responding to these posts, you may be ahead of us... I hope all is well and keep me posted! God bless!

kathyh007

sparkling said:

WoW! I finally found someone
WoW! I finally found someone who has the same diagnosis as my husband! How old is your Dad? I assume he is finished with CHOP and has had a scan, how did he do?

My husband was diagnosed in June09, 6 rounds of CHOP. The scans showed it the mass on the pancreas only shrunk less than 10%. He was already treated with the largest possible dose of CHOP, so no option there. He also had Thyroid cancer 3 months prior to this diagnosis. He doesn't qualify for any clinical trials since having 3 different cancers.

So, how is Dad doing now?

Janie

PTCL NOS - SGN 35
Hi Janie
I’ve been really busy for several months, and alternating with fatigue/pain. I saw your blog today and thought you’d like to hear some good news.

I have a combination of ALCL ALK- and PTCL NOS. The ALCL has CD30 antigens, so I was admitted into the SGN 35 clinical trial. IT WORKS!! I’m regaining my old strength and feeling better than I have in many months. When I started the treatment in December, I could barely get out of a wheel chair. Now I’m up and around much of the day. Still need a long nap in the afternoon and a lot of sleep at night. But I’m getting well!!!!

The treatment is so successful for many people, that Seattle Cancer Care Alliance opened their trial to PTCL NOS patients. You may want to check that out. Dr. Shustov heads the SGN 35 clinical trial. I was so sick and I wasn’t sure I would make it. But PTL! Here I am alive and getting better.

Many blessings, Kathy007

Jenna K

kathyh007 said:

PTCL NOS - SGN 35
Hi Janie
I’ve been really busy for several months, and alternating with fatigue/pain. I saw your blog today and thought you’d like to hear some good news.

I have a combination of ALCL ALK- and PTCL NOS. The ALCL has CD30 antigens, so I was admitted into the SGN 35 clinical trial. IT WORKS!! I’m regaining my old strength and feeling better than I have in many months. When I started the treatment in December, I could barely get out of a wheel chair. Now I’m up and around much of the day. Still need a long nap in the afternoon and a lot of sleep at night. But I’m getting well!!!!

The treatment is so successful for many people, that Seattle Cancer Care Alliance opened their trial to PTCL NOS patients. You may want to check that out. Dr. Shustov heads the SGN 35 clinical trial. I was so sick and I wasn’t sure I would make it. But PTL! Here I am alive and getting better.

Many blessings, Kathy007

PTCL NOS
HI
My Aunt was just recently dx'ed with PTCL NOS. From what I've read, we're completely scared out of our mind. We live in Los Angeles, CA. Where can we go to get the best treatment in Southern Calif? Any suggestions? What type or kinds of clinical trials are running in S,Calif? What is her outcome? Any comments or suggestions welcomed. Thanks and sorry for sounding so scared.
Jenna K

natalie14

michellelemon said:

Hi Natalie
I pray all is well with you! My father is in the midst of a stem cell transplant - he just completed day 3 of his 6 day high dose chemo regimin and his transplant is Monday - he is Ok right now although it will get a little messy next week when it hits him, we know. But I do not think it is to be terrified about... one day at a time and all will work out... I am so late in responding to these posts, you may be ahead of us... I hope all is well and keep me posted! God bless!

How is your father doing? I
How is your father doing? I hope he is recovering from his stem cell transplant! Was it an allo or auto transplant? Blessings to you and your father!!
Natalie

michellelemon

natalie14 said:

How is your father doing? I
How is your father doing? I hope he is recovering from his stem cell transplant! Was it an allo or auto transplant? Blessings to you and your father!!
Natalie

I really need to check this site more often!
My Dad - diagnosed with Non-Hodgkins PTCL NOS is still cancer free and hanging in after six rounds of chemo and an autologous stem cell transplant. It has not been a walk in the park, to be fair - but he is quite happy to be cancer free and moving ahead with his life...God bless!

sparkling

michellelemon said:

I really need to check this site more often!
My Dad - diagnosed with Non-Hodgkins PTCL NOS is still cancer free and hanging in after six rounds of chemo and an autologous stem cell transplant. It has not been a walk in the park, to be fair - but he is quite happy to be cancer free and moving ahead with his life...God bless!

How is everyone doing? My
How is everyone doing? My husband's status hasn't changed, the mass is about the same size. The pain he suffers through is horrible. Feet and hands, under the armpits. But nothing new has popped up other than a benign mass on the epiglotic and another one where the parotid glad once was.

JoanieP

natalie14 said:

How is your father doing? I
How is your father doing? I hope he is recovering from his stem cell transplant! Was it an allo or auto transplant? Blessings to you and your father!!
Natalie

Natalie
HI
I was so excited to see you post but then noticed the date. I know you are well and living your life but I have thought of you so much in the last year. Please write and let us know how you are. If anyone else corresponds with her privately please tell me how she is Joanie

miss maggie

sparkling said:

How is everyone doing? My
How is everyone doing? My husband's status hasn't changed, the mass is about the same size. The pain he suffers through is horrible. Feet and hands, under the armpits. But nothing new has popped up other than a benign mass on the epiglotic and another one where the parotid glad once was.

????
Hello,

I am so sorry for your husband's discomfort. If possible, can you post your
husband's history.

Prayers your way. Love Maggie

lf2011

T-cell Lymphoma
My husband was diagnosed in May of 2010 stage 4 and I have been looking for survivors of this terrible disease. He had the CHOP made it to 5 treatments -counts were really low - did a scan and there was some disease left. They started GND which worked really well for him he was doing great. Scans were clear etc. Set up for Stem cell transplant. Went for the scan and bone marrow testing and the cancer was back in the skeletal area and spleen which was where it started. His liver was not functioning properly, therefore, they could not treat the cancer and he died 8 days later. It seems to me it is very hard to find information about this disease. I was wondering who survives it and how they did it. I guess I would like to hear some success stories. How is your father doing? Sorry I know this posting was quite a while ago, but I just found it. Thanks.

po18guy

lf2011 said:

T-cell Lymphoma
My husband was diagnosed in May of 2010 stage 4 and I have been looking for survivors of this terrible disease. He had the CHOP made it to 5 treatments -counts were really low - did a scan and there was some disease left. They started GND which worked really well for him he was doing great. Scans were clear etc. Set up for Stem cell transplant. Went for the scan and bone marrow testing and the cancer was back in the skeletal area and spleen which was where it started. His liver was not functioning properly, therefore, they could not treat the cancer and he died 8 days later. It seems to me it is very hard to find information about this disease. I was wondering who survives it and how they did it. I guess I would like to hear some success stories. How is your father doing? Sorry I know this posting was quite a while ago, but I just found it. Thanks.

Found another!
I was diagnosed with PTCL-NOS in July, 2008. Stage IV, with 54 malignant nodes and cancer in my marrow. The short story is that Divine intervention saved my life. After immediate post-chemo relapse, I have now been in remission for over 2 1/2 years. The purpose of my life is to offer support and encouragement others traveling the same path.

Jim

po18guy

michellelemon said:

I really need to check this site more often!
My Dad - diagnosed with Non-Hodgkins PTCL NOS is still cancer free and hanging in after six rounds of chemo and an autologous stem cell transplant. It has not been a walk in the park, to be fair - but he is quite happy to be cancer free and moving ahead with his life...God bless!

Great news!
Michelle,

Yes, there is hope for those afflicted with this rare cancer. Your dad and I are examples of that. I pray that all is well and that he is enjoying even the 'new normal'.

Jim

sharlando

natalie14 said:

Peripheral Tcell lymphoma
I am a 28-year old mother and was just told I had relapsed with Peripheral Cutaneous TCell Lymphoma. Last year I completed my eighth round of CHOP chemo and am now just told I have to go through an autologous stem cell transplant. I AM TERRIFIED!!! They told me it is a 50% chance of cure. Natalie

Peripheral T-cell lymphoma nos
I am 48 years of age and in July 2011 I was diagnosed with stage III Non-Hodgkins Peripheral T-cell lymphoma unspecified. I had shortness of breath and a pain in my chest and right side. I began CHOEP chemo Sept 7, 2011 for six rounds. I received the autologous stem cell transplant Jan 2012. As of Sept 11, 2012, I received good reports. I will go for a PET Scan next month and pray for good results. God has brought me along way. I know the cancer could again raise its ugly head, but living my life for God makes me feel great. I also have lichen planus, oral lichen planus, and lichen sclerosis, which are not easy to deal with. I have always believed that things could always be worse. I do try to have an excellent attitude and I don't look at the prognosis anymore because it could be very depressing. I am very greatful to find others that are dealing with NHPTCL and are surviving. It gives me hope. My biological and church family have helped me greatly. I never knew how much people loved me until going through this ordeal. I just want everyone to know that I always include you in my prayers. There is very little information on this type of cancer and just knowing and communicating with others is a bright spot in my day. Love to all.

Zoi29

po18guy said:

Found another!
I was diagnosed with PTCL-NOS in July, 2008. Stage IV, with 54 malignant nodes and cancer in my marrow. The short story is that Divine intervention saved my life. After immediate post-chemo relapse, I have now been in remission for over 2 1/2 years. The purpose of my life is to offer support and encouragement others traveling the same path.

Jim

po18guy I am very happy to
po18guy I am very happy to hear that you are doing well. What exactly is divine intervention? Is it being religious and believing in god only? Did you do anything else but the Divine intervention?

po18guy

Zoi29 said:

po18guy I am very happy to
po18guy I am very happy to hear that you are doing well. What exactly is divine intervention? Is it being religious and believing in god only? Did you do anything else but the Divine intervention?

It wasn't exactly up to me...
I will keep it very general: Divine intervention is action taken by someone of great power who is outside of this earth. Far too many locked doors were opened for me, all in sequence and at the exact time. My hematologist is not a religious man, but he calls my case "a miracle to be watched." There is no earthly or scientific explanation for the things that have occurred. I know that it is not trendy at all to have an old-fashioned faith these days, but that is exactly what I have been given. It is the only thing on earth that could make this journey not only survivable but, in the end, even desirable. If I could go back four years and have my choice, I would accept the cancer gain. It has become that much of a blessing. Heck, I'll probably develop it a third time, but that's OK. I am living more and more for the next world and less and less for this one. No death wish, but after facing it twice, death no longer frightens me.

michellelemon

po18guy said:

It wasn't exactly up to me...
I will keep it very general: Divine intervention is action taken by someone of great power who is outside of this earth. Far too many locked doors were opened for me, all in sequence and at the exact time. My hematologist is not a religious man, but he calls my case "a miracle to be watched." There is no earthly or scientific explanation for the things that have occurred. I know that it is not trendy at all to have an old-fashioned faith these days, but that is exactly what I have been given. It is the only thing on earth that could make this journey not only survivable but, in the end, even desirable. If I could go back four years and have my choice, I would accept the cancer gain. It has become that much of a blessing. Heck, I'll probably develop it a third time, but that's OK. I am living more and more for the next world and less and less for this one. No death wish, but after facing it twice, death no longer frightens me.

Continued hope and good news!
My father, at the age of 76 now (hard to believe it has been over 3 years) continues to be in total remission and is doing well! As stated earlier, he started with the CHOP regimin and then underwent an autologous stem cell transplant for this. We had two scares with him having pulmonary embolisms and 8 days in ICU each time in the midst, but he survived each time - and is on the blood thinner coumadin for life now - a good thing! We also had a recent concern,as there was a possibly "hot spot" found on his lung in a follow-up Pet scan. But, thankfully, a recent second scan showed it to be non-cancerous! He is feeling well and living a full, healthy life! I am so happy to be able to offer this hopeful message - as I know I was not offered many upon his initial diagnosis. Prayers for all going through this -and know there is hope! One aside- upon learning recently that there was no longer a concern about his lung, my Dad, in his usual, mellow way, said to my Mom "I guess I did OK:-)", to which my Mom replied "Yes, you - and all of the prayers everyone has been saying for you!" God bless!

michellelemon

lf2011 said:

T-cell Lymphoma
My husband was diagnosed in May of 2010 stage 4 and I have been looking for survivors of this terrible disease. He had the CHOP made it to 5 treatments -counts were really low - did a scan and there was some disease left. They started GND which worked really well for him he was doing great. Scans were clear etc. Set up for Stem cell transplant. Went for the scan and bone marrow testing and the cancer was back in the skeletal area and spleen which was where it started. His liver was not functioning properly, therefore, they could not treat the cancer and he died 8 days later. It seems to me it is very hard to find information about this disease. I was wondering who survives it and how they did it. I guess I would like to hear some success stories. How is your father doing? Sorry I know this posting was quite a while ago, but I just found it. Thanks.

So sorry
I am so sorry to hear of his passing. God rest his soul and prayers for you. All I can offer, scientifically, is that although my father's was found in every lymph node, it was not found elsewhere? And he responded to CHOP, somehow, after three treatments? I know more information needs to be made known about this form - we were operating very much in the dark. Take care and I hope you are well!

po18guy

michellelemon said:

Continued hope and good news!
My father, at the age of 76 now (hard to believe it has been over 3 years) continues to be in total remission and is doing well! As stated earlier, he started with the CHOP regimin and then underwent an autologous stem cell transplant for this. We had two scares with him having pulmonary embolisms and 8 days in ICU each time in the midst, but he survived each time - and is on the blood thinner coumadin for life now - a good thing! We also had a recent concern,as there was a possibly "hot spot" found on his lung in a follow-up Pet scan. But, thankfully, a recent second scan showed it to be non-cancerous! He is feeling well and living a full, healthy life! I am so happy to be able to offer this hopeful message - as I know I was not offered many upon his initial diagnosis. Prayers for all going through this -and know there is hope! One aside- upon learning recently that there was no longer a concern about his lung, my Dad, in his usual, mellow way, said to my Mom "I guess I did OK:-)", to which my Mom replied "Yes, you - and all of the prayers everyone has been saying for you!" God bless!

Amazing success for CHOP.
Given PTCL's reluctance to respond to the old-line therapy of CHOP, your father's response is excellent. What a blessing! PTCL-NOS (or US) is actually a quite wide variety of unknown sub-types of PTCL. Thus, some respond to CHOP while others simply do not. There is no known regimen to which any given variety will respond, so doctor guessed correctly. And, the Auto SCT during first remission gives him a pretty good chance of remaining disease-free for the remainder of his life. Since my variety was highly resistant to chemo therapy, and either was not eliminated by chemo, or relapsed immediately, I do not have the option of an Auto SCT. Neither do I have the option of an allogeneic SCT, as there is no known donor. However, a new class of drugs has emerged, with great promise: the "inhibitors." I have received HDAC inhibitor Romidepsin/Istodax (histone deacetylase inhibitor) now for over 3 1/2 years, and have been in full response almost as long. There are other HDAC inhibitors available, and other "inhibitor" drugs in trial. A new variety is the Aurora Kinase Inhibitor, which along with the HDAC inhibitors, either forces or restores normal cell division. These drugs are far less toxic than conventional chemotherapy and can be tolerated for longer periods of time. Something to keep stored in the back of one's mind just in case. However, we hope and pray that this never happens.