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Thread: Father diagnosed with AITL

  1. #1
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    Father diagnosed with AITL

    Hello All,

    I wasnít sure how to create my own thread on here, so am carrying on from the last.

    PO18GUY I was wondering if you might be able to help me. My Father was diagnosed with AITL back in June and was put on CHOEP, however, we found out a couple of weeks ago heís stopped responding.

    I know from reading your posts how important it is we see a T Cell specialist, and I wondered if you might be able to recommend one in London/UK? If not? Iíd be willing to fly him out to Seattle to see Dr Shuthov if necessary. Weíre seeing a top Lymphoma specialist in London on Friday, so hopefully Iíll get some more information then.

    Do you know if Romidepsin is approved in the UK? It sounds as though my Father might need to be put on this and if it means paying every single penny that I have, I will.

    As you mentioned the doctor didnít give you much hope after the disease relapsed, and itís been the same for us, but Iím not giving up.

    Heís only 57, so Iím assuming heíd be fit enough to go ahead with the SCT?

    Look forward to hearing from you.

    Best,
    L x

  2. #2
    Super Moderator Top User po18guy's Avatar
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    I made a thread for you, as this deserves its own attention. OK, now I know what your friend request is. As you are well aware, I am in the US. I would think that the NHS might have an online listing or catalogue of approved drugs. Your father's consultant surely could check.

    I have lived in the research world, so I have had the advantage of drugs and combinations that were not yet available elsewhere. Romidepsin is an obvious choice, but it is also being combined with CHOP to form RoCHOP. Pralatrexate, Belinostat, Adcetris and now Poteligeo, as well as Opdivo (Nivolumab) are being used against various lymphomas.

    One who knows the NHS and lymphoma quite well is johnr. He will probably take notice and respond to this thread.
    Last edited by po18guy; 11-22-2018 at 10:43 AM.

  3. #3
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    Hi, and good to see you found us on this forum, as I mentioned on the Mac site I have limited knowledge of T cell lymphoma and what goes on in the UK, to answer you 2 key questions about specialists and drugs being available in the UK I would suggest you ring either the Macmillan helpline and ask to speak to one of the lymphoma nurses. Or call the Lymphoma Action charity or Blood wise charity and see what information they have as they will be much more up to date and if they don't have the answers may well know how to help you find them.

    regards
    John

    The is a trial running for peripheral T cell where Romidepsin and another drug are being trialled more info on cancer research and it does look like NICE guidelines are show the drug is not approved for use in the UK.

    If the specialist you end up seeing believes the drug could help your dad you can ask them to apply to use it on compassionate ground, I know others who have had unlicensed drugs for use in the UK. Also may be worth checking the cancer drug fund to see whats possible there too.
    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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    Hi Guys,

    Thank you both for your very helpful replies.

    I had a look today and there is indeed a trial going on at the moment which includes Romidepsin with another drug, to make it ROMICAR. Iím certainly going to ask about this tomorrow, as it seems to me that this would be the right route to go down.

    If Romidepsin is successful in treating PTCL, why isnít it given to everyone? That might be a silly question but Iím intrigued. If they donít let him on the trial, are there other ways of getting the drug?

    Sorry for all the questions, but you guys know your knowledge and itís brilliant.

    Thank you!
    L x

  5. #5
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    Hi Guys,

    Thank you both for your very helpful replies.

    I had a look today and there is indeed a trial going on at the moment which includes Romidepsin with another drug, to make it ROMICAR. Iím certainly going to ask about this tomorrow, as it seems to me that this would be the right route to go down.

    If Romidepsin is successful in treating PTCL, why isnít it given to everyone? That might be a silly question but Iím intrigued. If they donít let him on the trial, are there other ways of getting the drug?

    Sorry for all the questions, but you guys know your knowledge and itís brilliant.

    Thank you!
    L x

  6. #6
    Super Moderator Top User po18guy's Avatar
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    RomiCar does indeed sound promising. I was scheduled to receive carfilzomib in a clinical trial, but the trial closed here in the states before I could enroll. Do not be alarmed that it is primarily an anti Myeloma drug, as the newer "inhibitor" class of drugs seems to have a broad, and growing application in both anti-cancer usage as well as immune system modulation in the case of transplant patients.

    Dad is still fairly young, so he should easily qualify for most trials, one would think. One thing I would mention is that if he has suddenly stopped responding to CHOEP, an additional biopsy might be warranted, as T-Cell Lymphomas can mutate into two or more sub-types. Precisely that occurred in my case and it seemed that only one would respond to any given medication.

    I am certain that Bendamustine, Carboplatin and Etoposide are approved in the UK - your dad is already receiving Etoposide. However, the unique combination of these established drugs have a synergistic effect that was not seen in previous years. Known as "TEC", that combination did exceptionally well in eradicating the three different malignancies I had simultaneously in 2015.

    Do let us know how your father goes, and if needed, I will certainly see what I can do to direct you to a T-Cell specialist either here in Washington State, or in the New York area.
    Last edited by po18guy; 11-22-2018 at 09:27 PM. Reason: typos
    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.

    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.

  7. #7
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    Thank you so much, PO18GUY!

    Iíve being doing some more research in this particular trial, and it just so happens that one of the investigators is the specialist were seeing on Monday. Is that a coincidence or is it just a very small world!?

    Iíll be in touch soon, many thanks for all your help. Iím really grateful!

  8. #8
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    So I went to see a Specialist in London yesterday and he just made me feel so much more comfortable about the situation.
    He explained that once the AITL comes back, there are other options (Dads consultant down in the South of England gave us no hope) and it will be most likely onto an ALLO transplant. He did also mention that the ROMICAR trial would also be an option followed by the transplant.
    Weíre seeing another Specialist on Monday that will tell us exactly whatís going on.
    What are the complications in association with the transplant? Is it hard to find a Donar?
    Many thanks,
    Lillie

  9. #9
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    Hi Lillie, pleased you feel more confident and reassured that your dad has options and you have found a consultant that can explain things. As for transplants and donors, sometimes its pot luck re donors, some times they can be found without a long wait and in other cases it can take months and end up with no donor being found. Starting the search early is the best advice, the are registers your dads team will trawl to see what options are out there and you can have family members tested to if they are will to consider being a donor, Po had cells donated from his son and he will explain more. As for complications, the first hurdle is "The Talk" as they have to explain all possible situations and that can come across as scary and be worrisome. Some people suffer GvHD and some sail through with minimal side effects, currently they are researching to see if they can identify those who may be a higher risk for complications. The is a stem cell group on this site and also one back on the Macmillan site, but few T cell people on the Mac site.

    Po will be along shortly and he can explain in more detail.

    John
    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.

  10. #10
    Super Moderator Top User po18guy's Avatar
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    You are a prophet, John! Yes, it is time to begin thinking of and planning in earnest for transplant. Even though the cautions associated with transplant are many, bear in mind that even Paracetamol is dispensed with cautions. As well, the default - the baseline - is what the cancer will accomplish if not stopped. That must be your mindset in all decision-making from here forward. And, placed in that light, decisions will not seem quite as daunting.

    Lamentably, there is no drug, no treatment regimen, not even a type of transplant which guarantees 100% effectiveness. Every decision we make, each action we take assumes risks. As to transplant, T-Cell Lymphomas are well known for defeating autologous transplants. That type of transplant is merely a re-infusion, (some refer to it as 're-booting') of the same immune system which failed and allowed the lymphoma in the first place.

    As to potential donors,your dad's siblings (if any) are the logical choices, as both maternal and paternal DNA are the same. This does not guarantee that there will be sufficient HLA matches found, however. Even children can be tested for a potential haploidentical transplant. Those are expected to produce less graft-versus-host-disease. Take no notice of my difficulties, other than the fact that I have so far survived. My path is absolutely unique.

    I will tell you that there is a lymphoma patient here in the states who was diagnosed at a major facility and treated with several regimen. He essentially failed all of them and was rushed into a transplant. He immediately failed that and the facility offered him a single option before washing their hands of him!

    He flew to Seattle and Dr. Shustov had three options to present to him. More amazing is that in subsequent review, doctor determined that he did not in fact have a T-Cell Lymphoma, but rather Hodgkin's lymphoma! Virtually all of his treatment, including the transplant, was essentially for naught.

    He is now enrolled in a clinical trial here in the Seattle. There is always hope - if one seeks out the best in the field.

 

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