Angioimmunoblastic T-cell Lymphoma Stage IV

Carsg40

This is the lymphoma my husband was diagnosed with last May. Anybody have any experience with treatment options. We have completed CHOP and before they could start Stem Cell Transplant, it was back in his bone marrow. Not a candiate for SCT. He is now on Gemzar for 8 treatments. He has had 2 treatments delay due to low blood counts. Three more to go on this treatment plan and  He is ready to throw the towel in.  So sad! Any words to share are appreciated. 

po18guy

Change doctors or facilities! Don't give up!

You need a T-Cell Lymphoma specialist. T-Cell Lymphomas are difficult, and no standard therapy exists to this day. However, there are many options. I have been at stage IV with both PTCL-NOS as well as Angioimunoblastic T-Cell Lymphoma. I am sorry to hear that CHOP was used, as it is rarely effective. Etoposide was added to my mixture (CHOEP-14) and it eradicated >50 tumors + bone marrow involvement. That was followed immediately by GVD (Gemcitabine, Navelbine and Doxil), which kept me in full response, but I also immediately relapsed. I went into the clinical trial (now an approved drug) of Romidepsin and remained in full response for 4 1/2 years.

Relapsed or refractory lymphoma qualifies him for several newer, less toxic drugs. Romidepsin, Pralatrexate, Belinostat, and others, but you need to get him to a National Cancer Institute designated cancer center. This is crucial, as they have clinical rials and employ the best and brightest, who use the latest research data. Actually, a clinical trial may be his best bet, but those are conducted only at certain larger research facilities.

It was actually my 5th salvage regimen that placed me in full response from AITL. It is known as TREC (Bendamustine, Rituxan, Etoposide and Carboplatin). It is a new combination of older drugs, and in the case of T-Cell Lymphomas, the Rituxan is omitted as it is ineffective against T-Cell Lymphmas. In only two infusions, it eliiminated two dozen tumors and small intestine involvement. Doctor was amazed. However, you must probably go to a major research and treatment center to receive it, as local oncologists and hematologists are either uncomfortable with, un unable to use newer regimens. To show you what is possible, here is my treatment history:

07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed - Progression.
01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
02/24/15 Pralatrexate/Failed - Progression. 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

 

 

 

Carsg40

po18guy said:

Change doctors or facilities! Don't give up!

You need a T-Cell Lymphoma specialist. T-Cell Lymphomas are difficult, and no standard therapy exists to this day. However, there are many options. I have been at stage IV with both PTCL-NOS as well as Angioimunoblastic T-Cell Lymphoma. I am sorry to hear that CHOP was used, as it is rarely effective. Etoposide was added to my mixture (CHOEP-14) and it eradicated >50 tumors + bone marrow involvement. That was followed immediately by GVD (Gemcitabine, Navelbine and Doxil), which kept me in full response, but I also immediately relapsed. I went into the clinical trial (now an approved drug) of Romidepsin and remained in full response for 4 1/2 years.

Relapsed or refractory lymphoma qualifies him for several newer, less toxic drugs. Romidepsin, Pralatrexate, Belinostat, and others, but you need to get him to a National Cancer Institute designated cancer center. This is crucial, as they have clinical rials and employ the best and brightest, who use the latest research data. Actually, a clinical trial may be his best bet, but those are conducted only at certain larger research facilities.

It was actually my 5th salvage regimen that placed me in full response from AITL. It is known as TREC (Bendamustine, Rituxan, Etoposide and Carboplatin). It is a new combination of older drugs, and in the case of T-Cell Lymphomas, the Rituxan is omitted as it is ineffective against T-Cell Lymphmas. In only two infusions, it eliiminated two dozen tumors and small intestine involvement. Doctor was amazed. However, you must probably go to a major research and treatment center to receive it, as local oncologists and hematologists are either uncomfortable with, un unable to use newer regimens. To show you what is possible, here is my treatment history:

07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed - Progression.
01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
02/24/15 Pralatrexate/Failed - Progression. 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

 

 

 

Wow! You are amazing.  We did

Wow! You are amazing.  We did go to Emory University, Winship Cancer Center in Atlanta. After 5 visits and much testing, he was deemed not a canidate for stem cell transplant. He was under the care of The Head of Hemotology at the Center she called it Failure to Thrive.  The CHOP did it's job on the cancer, at one point he was cancer free or in remission but so many detours, blood clots, heart, liver, and gal-bladder issues kept stalling the treatment. I'm sure they didn't want a failure statistic in their system. My husband is tired! Very tired of the whole process. While I don't mind helping him with anything, he does not like it at all, especially personal daily living stuff.  If you don't mind I would like to share your history with his Hemotoligst/oncologist. I pray for your continued success with your journey. I pray for strength for my husband and God's will for his survival.  Thank you for your candid response, you are an inspiration to this community. God Bless!

 

po18guy

Carsg40 said:

Wow! You are amazing.  We did

Wow! You are amazing.  We did go to Emory University, Winship Cancer Center in Atlanta. After 5 visits and much testing, he was deemed not a canidate for stem cell transplant. He was under the care of The Head of Hemotology at the Center she called it Failure to Thrive.  The CHOP did it's job on the cancer, at one point he was cancer free or in remission but so many detours, blood clots, heart, liver, and gal-bladder issues kept stalling the treatment. I'm sure they didn't want a failure statistic in their system. My husband is tired! Very tired of the whole process. While I don't mind helping him with anything, he does not like it at all, especially personal daily living stuff.  If you don't mind I would like to share your history with his Hemotoligst/oncologist. I pray for your continued success with your journey. I pray for strength for my husband and God's will for his survival.  Thank you for your candid response, you are an inspiration to this community. God Bless!

 

Life itself is a battle - this is just the latest fight.

I give glory to God, as I have had a lot of help - and a ton of prayers. Still, there are less toxic drugs that do not have the serious side effects. Even modified or lower dosing of existing regimens might be considered, to keep the cancer at bay. Can you get over to Moffitt in Tampa? Some brilliant doctors there, and many clinical trials - I am in one now. The T-Cell Lymphoma specialists tend to be on the coasts, and Dr. Owen O'Connor at Columbia and Dr. Steven Horwitz at Memorial Sloan-Kettering in New York are two of the absolute best.

Even though he is tired, I would tell your husband this: If he was on a bridge admiring a river, and slipped and fell in, would he just sink to the bottom, thinking that this was it? No! He would struggle back to the surface and then to the shore. Life is worth living, even when we are tired, fatigued, even depressed, as all of this passes. Cancer is the bully in the room and even though we are not fighters by nature, we must resist the bully. Even if we ultimately lose, it is better to go down fighting than curled up in a ball.

Carsg40

Amen, and when I stop crying

Amen, and when I stop crying I will tell him your bridge story. I pray God will give him the strength!

po18guy

T-Cell information with Dr. Owen O'Connor

Even though this video is 2 1/2 years old, Dr. O'Connor provides information regarding new combination therapies that are certainly more available now than when the video was made.

https://www.youtube.com/watch?v=9Tmk_6wFFvk

Max Former Hodgkins Stage 3

Carsg40 said:

Amen, and when I stop crying

Amen, and when I stop crying I will tell him your bridge story. I pray God will give him the strength!

Be a renegade....

Cars,

It is time for you and hubbie to become Renegades. If the people in this vid can do what they did, with Po's references and your own love and survival instincts, you two can survive T-cell NHL.

When I watch this, it makes me feel like I've never really ever been challanged to date in my life. Compared to many here, I never have been,

https://www.youtube.com/watch?v=1u-niluB8HI

max

.

Crazy Cat Lady

po18guy said:

Change doctors or facilities! Don't give up!

You need a T-Cell Lymphoma specialist. T-Cell Lymphomas are difficult, and no standard therapy exists to this day. However, there are many options. I have been at stage IV with both PTCL-NOS as well as Angioimunoblastic T-Cell Lymphoma. I am sorry to hear that CHOP was used, as it is rarely effective. Etoposide was added to my mixture (CHOEP-14) and it eradicated >50 tumors + bone marrow involvement. That was followed immediately by GVD (Gemcitabine, Navelbine and Doxil), which kept me in full response, but I also immediately relapsed. I went into the clinical trial (now an approved drug) of Romidepsin and remained in full response for 4 1/2 years.

Relapsed or refractory lymphoma qualifies him for several newer, less toxic drugs. Romidepsin, Pralatrexate, Belinostat, and others, but you need to get him to a National Cancer Institute designated cancer center. This is crucial, as they have clinical rials and employ the best and brightest, who use the latest research data. Actually, a clinical trial may be his best bet, but those are conducted only at certain larger research facilities.

It was actually my 5th salvage regimen that placed me in full response from AITL. It is known as TREC (Bendamustine, Rituxan, Etoposide and Carboplatin). It is a new combination of older drugs, and in the case of T-Cell Lymphomas, the Rituxan is omitted as it is ineffective against T-Cell Lymphmas. In only two infusions, it eliiminated two dozen tumors and small intestine involvement. Doctor was amazed. However, you must probably go to a major research and treatment center to receive it, as local oncologists and hematologists are either uncomfortable with, un unable to use newer regimens. To show you what is possible, here is my treatment history:

07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed - Progression.
01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
02/24/15 Pralatrexate/Failed - Progression. 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

 

 

 

Aitl

Hi, I'm new here and am hoping you can help me. Would you mind if I explain what's going on with me? I'd love to get your input. I'll check back here tomorrow. I'm directing this to po18guy. I've heard you are loaded with knowledge  

 

Thank you

po18guy

Crazy Cat Lady said:

Aitl

Hi, I'm new here and am hoping you can help me. Would you mind if I explain what's going on with me? I'd love to get your input. I'll check back here tomorrow. I'm directing this to po18guy. I've heard you are loaded with knowledge  

 

Thank you

Why not start a new thread?

Repsonses can get lost within another thread. And, your concerns should be addressed separately.