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Thread: CHOP Experience, to an auto SCT for AITL / PTCL

  1. #41
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    Yes, thanks! Necrotizing granuloma is the technical reference.

  2. #42
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    I'm glad they took it out - I bet you are too! Hope this week goes by fast so you can get some definitive answers and move forward!

  3. #43
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    Path Forward Still Complicated

    Good news is that the removed nodule was not cancerous. Bad news is that it was an egg sized nodule of dead or dying cells associated with the PJP pneumonia I encountered during CHOP Cycle 2, which triggered my first post on this forum. Pathology could not determine if the PJP was active.

    Spent a good deal of time with Infectious Disease specialists. Evidently it is rare, or they just have not seen, that PJP pneumonia form a nodule of that size. PJP cannot be cured only suppressed. They had no explanation as to why the nodule continued to grow. Closing comment was "we have seen many people come out of transplant with PJP pneumonia but have not had anyone go into a transplant after having had PJP". They are looking for case examples and are hesitant to clear the transplant at this point.

    It appears that the risks of transplant have increased due to the seriousness and unusual characteristics of the PJP.

    Lung surgery is healing nicely. Off all pain meds. Learning how to breathe deep again! Need to reach a decision about advisability of going forward with a transplant between now and when recovery is complete enough to move forward. Obviously, the optimal time for starting a transplant has already passed.

  4. #44
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    I went back and reread your thread to see where you were getting your treatment from. Cleveland Clinic, of course, is a first class hospital and care facility. They saved my father's life 25 years ago. And you mentioned that MSK advised you to have your transplant at Cleveland since they are comfortable with their care. Now that you have found out what was in your lung, and they are hesitant about going into transplant, it might be time again to visit a T cell specialist for a second opinion as to treatment. All I can go on is my own brother's experience, who was receiving what we thought was excellent care at Inova Fairfax Hospital, one of the best on the east coast. What we didn't know, and the doctors there were not aware of, were the myriad options available if someone is not going to transplant just yet. I'm sure you have read of the many combinations and approvals of drugs to treat AITL, or T Cell lymphomas, that have made their way into care options through trials. So don't despair. Look for the answers that will best fit your situation. Maybe this means going out of your comfort zone - both physically and emotionally. Good luck as you search for answers and a way forward.

  5. #45
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    Thanks for your thoughtful suggestions and caring response. It is uplifting! We are considering the options going forward while I heal up from the lung surgery. Unfortunately an infection just emerged around the surgery drain site so I am on strong antibiotics. Tomorrow we will have a consult to hear recommendations about the way forward. In the mean time, life is good! Last week was our 40th anniversary and we made the 7 hour trip to visit our grandkids! Nothing like an 18 month old to show how much chemo has caused aging.

  6. #46
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    Back on the Transplant Bus

    Follow ups with Infectious Disease and Oncologists completed and we are back to scheduling for transplant! Perhaps an interim round of Etoposide to refresh the CHOP results will be included. CT Scan showed that all lymph nodes continue to be dormant. All vestiges of the PJP pneumonia have been removed and affected lung is expanding nicely to fill vacated space. Hit 100% again on the oxygen meter.

    A significant percentage of people go into transplant not knowing that they are carriers of PJP. I will know this going in. Bactrim is the drug of choice to suppress it. High dosages of Bactrim have historically triggered a skin rash for me. I will be working with an allergist to try and desensitize this. Continuing to monitor this post transplant will also be important. According to the lung surgeon, the size of the nodule removed indicated that the PJP infection had almost reached a lethal stage before it was stopped. PJP symptoms were mild until it reached this stage. Very slight fever and increasing fatigue. Both of these symptoms I had associated with chemo side effects and a normal head cold.

    When the PJP symptoms started to escalate was when I first posted to this forum to ask about the typical CHOP side effects. Another round of thanks to the quick replies which encouraged me to call the doctor about the increasing symptoms which were not typical. Seems like we caught this thing just in time!
    Last edited by jwessel; 09-03-2019 at 09:43 PM.

  7. #47
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    Thank goodness you caught it in time! I am happy for you that you are back on track. When my brother first went to NY for his transplant in December, at the last second they discovered a B cell lymphoma also, which stopped the transplant. If they had gone ahead, he most likely would not have survived. So when the transplant happened in April, it was the right time and everything worked out. I pray that this happens for you too. Thanks for the update and good luck with the Bactrim.

  8. #48
    Super Moderator Top User po18guy's Avatar
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    Dodged a bullet! I guess that in order to prevent such infection, I have been on Atovaquone for years now. I see that in addition to Atovaquone, other treatments include: pentamidine, trimetrexate, dapsone, primaquine, and pafuramidine maleate.

    Certainly poor timing to neutralize your immune system.
    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.

  9. #49
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    I was switched to Atovaquone once Bactrim triggered a rash. Hopefully they have given you a more convenient dosage than the messy liquid syringe! Since then I have been on Pentamidine via inhalation therapy. I have had no adverse reactions to either of the last two. I was taking 9 double dose tablets of Bactrim when it caused an issue, and that was after two weeks. I am hopeful that I can take a suppression dosage for 3-4 weeks and it is nice to know that there are backups.

  10. #50
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    Hickman port went in today. First Zarxio injections start tomorrow. Harvesting of stem cells begin on the 17th with admission for transplant on September 23rd. Four days of Busulfan, two of Etoposide, two of Cyclophosphamide, a day of rest and then Day 0 on October 2nd. Relieved to be starting the process. I am under no preconception that it will be easy, but I've always lived under the perspective that if you are going to take a beating, might as well get it over with sooner than later. Hope to be reasonably back on my feet to be able to enjoy Thanksgiving.

 

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