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Thread: Grandfather diagnosed with AITL -- options for prolonging life, even if short-term

  1. #11
    Administrator Top User Didee's Avatar
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    Jun 2010
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    11,461
    New members sometimes get their posts put into moderation and need to be approved. It is something to do with our spam filter, it can happen anytime in the first 10 posts. Moderators who reply to them also get their posts put in moderation till approved, lol. Hopefully yours will go through ok now. My best wishes to you and your Grandfather.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  2. #12
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,490
    Quote Originally Posted by lovemygrandpa View Post
    I see that my last comment hasn't posted yet, but I will follow up with another question:

    Just heard about Brentuximab Vedotin from a doc at Stanford. Anyone have any experience with this? The doc says "The drug called Brentuximab Vedotin and antibody-drug conjugate against the CD30 target on the T lymphoma cells has shown a pretty good response rate in this disease. But it requires intravenous infusion on an every three week basis and has some side effect on the nerves."
    Brentuximab Vedotin (Adcetris, SGN-35) is a brilliant combination of a chemotherapy drug and an anti-body. And it is known for causing some neuropathy. The antibody portion is attracted to, and absorbed into the mutated T-Cell when it comes into contact with it. And when it begins to dissolve inside the cell, the bond between the anti-body and drug is broken, releasing the drug, which kills the cell. It is referred to as a Trojan Horse mechanism. It does indeed target the CD30 protein, but AITL is not CD30 positive. Both Anaplastic Large Cell Lymphoma (ALCL - a T-Cell Lymphoma) and Hodgkin's Lymphoma (a B-Cell Lymphoma) are CD30+, and so react to Adcetris. It would be the same case with CD20 proteins, as Rituximab (Rituxan) targets that protein, but CD20 by definition, is a B-Cell protein.

    And, herein lies the difficulty with fighting T-Cell Lymphomas. Not only are they completely different from B-Cell Lymphomas, they are also completely different from each other. And, this is where Romidepsin can shine. Its toxicity is low enough that grandfather could probably receive it. Another potential treatment is the newly approved (July 3, 2014) drug Beleodaq (Belinstat). It is in the same category of drug (HDAC Inhibitors) as Romidepsin, yet shows a 45.5% response rate in AITL, which is huge. A couple of caveats: It may not be recommended due to age, and the 45.5% response rate covers the gamut from partial to complete response. I am currently receiving this drug via infusion, in the hope that it can keep my AITL at bay.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone 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. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #13
    Senior User
    Join Date
    Jan 2015
    Posts
    320
    I think Brent won't work for T-cell, as poguy mentioned. I have seen it achieve really great results for people with relapsed or refractory Hodgkin's, but not seen it used at all for T cell.

    If your grandpa doesn't want chemo, it sounds like what poguy is mentioning could be what you are hoping for - a drug that could at least help prolong the time he has left with potentially minimal side effects (or at least ones that aren't as severe as chemo side effects can be). But as you've mentioned, all of this will have to be your grandfather's choice.
    Kirsten.
    Boyfriend Rio diagnosed NSHL 29th July 2014 (24 years old)
    Stage IVBSX (~15 cm primary tumour)
    eBEACOPP 30th July to 3rd December, 2014
    Post TX PET 12th January, 2015
    Results 20th January, 2015
    Complete metabolic response. Rio's remission has begun!

  4. #14
    Thank you both so much for the valuable info. The past few days have been very up and down. At this point, things feel pretty bleak. I just have to keep reminding myself that he's had a good, long life, and that all of us will be really lucky to make it anywhere close to 85. But, understandably, he's pretty depressed about the short timeline he's facing. I do think once he is able to accept the situation, then we will be able to also.

    Anyway, current plan is just finish gathering information on these various drugs and present him with reasonable options (if any).

    Romidepsin does seem like it has potential. But I've seen that it's only prescribed in relapsed cases or with patients that have already been treated with something else... Is there a health reason for this? We haven't had an appointment with my grandfather's doctor yet, but I'm wondering if this is even a feasible option since my grandfather has only taken Prednisone so far over the 2 weeks since he was diagnosed and won't be doing any chemo.

    Po8guy, I hope Belinostat is working for you. Is this also not a chemo drug? I also see that it's prescribed for relapsed or refractory disease... Would that preclude my grandfather as well?

    Thank you all so much. I hope you have a happy weekend.

    P.S. I did hear from other family members that my grandfather was told by doctors that chemo would give him 1.5-2 years (instead of 6 mo). I didn't realize that he was refusing something that would give him that much more time. I'm not sure if this makes sense, and of course it's not about how I feel, but to know that he was given that option and didn't want it, does make me feel better (in that he's choosing his own course and is fully aware of the implications).

  5. #15
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,490
    Newer drugs such as Vorinostat (Zolinza), Romidepsin (Istodax), Belinostat (Beleodaq) are all targeted therapies known as Histone Deacetylase Inhibitors - biological drugs that have some side effects, but are not chemotherapy. Since they are generally lower toxicity, I am guessing that a more effective dose could be given an 85 year old. I'm not certain, but prednisone may qualify as a primary treatment, since it is included in old-line lymphoma treatments as part of the mix. Thus, moving to a new drug would be a secondary therapy. This you would have to ascertain with doctor. This is a conundrum in modern medicine: that drugs which are known to work poorly and are toxic must be tried before the newer drugs that are less toxic and are more effective. It was part of he deal with the FDA in the "fast track" accelerated approval process which the drugs underwent.

    Yet, at 85, how much longer did he plan on living? 95? 100? In truth, we must be prepared to go at any moment, at any stage of our lives. Secondly, I think he fears the word "chemotherapy" far too much. His dosage would be adjusted for his age and physical state. The treatment itself cannot be immediately toxic, or else it is no longer therapeutic in nature. But, with AITL having no standard treatment, he should consider something. He can call treatment off at any time - nothing is forced upon him. He may not respond at all to CHOP, or to CHOEP (which simply adds Etoposide), or to any other drug or combination. That is the very nature of T-Cell Lymphomas.

    Having received Romidepsin for 5 years, and having zero long-term side effects, I think this would be the "go-to" drug, particularly for his age group. Whatever he does, he should devote serious thought to this, perhaps consulting with family. AITL does not take all that long to degrade the immune system to the point that nothing can be given. A tough decision, but such a targeted therapy is the only reason that I survived past 2009. That much is clear. As to Belinostat, stay tuned!
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone 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. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (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) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell 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 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  6. #16
    Newbie New User
    Join Date
    May 2019
    Posts
    3
    Hi Katie,

    My boyfriend is in SF going through a similar situation. What hospital did you guys do treatment at? Who was your doctor? This post was 4 years ago now, whatÂ’s the status of his health? Anything helps! Thank you.

    Love +

    I am looking to connect with ANYONE who is dealing with any type of T Cell lymphoma. Desperately...
    Last edited by po18guy; 05-29-2019 at 09:47 PM.

  7. #17
    Administrator Top User lisa1962's Avatar
    Join Date
    Jan 2013
    Posts
    4,016
    Sorry to hear of your boyfriend's diagnosis. The OP has not returned back to update thread.

    I would suggest creating your own unigue thread so our members can respond to you without it being aligned with another members thread which is confusing.

    I am closing this thread as the OP has not updated in over 5 years.

  8. #18
    Moderator Top User
    Join Date
    Mar 2010
    Posts
    1,350
    Hi do start your own thread and others will reply and look up the T cell Foundation lots of good info there
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

 

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