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Thread: One haploidentical transplant experience (ongoing)

  1. #761
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by sacha39 View Post
    Hi po,

    I don't really understand what is happening but if someone can face this and beat it, it's you. Sending positive thoughts out of my anxiety ridden brain.

    Best,

    Marie
    Marie, my current status is "In between cancers" if you can accept that.

    Fear this!

  2. #762
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    Quote Originally Posted by po18guy View Post
    Marie, my current status is "In between cancers" if you can accept that.

    Fear this!
    Hi again po,

    What are the Interleukin thing and the damaged port? I don't really know much about all that,

    Have a great day,

    Marie

  3. #763
    Super Moderator Top User po18guy's Avatar
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    Well, my "vortex" port is designed with a lifespan of 200 sticks, or needle accesses. It seems that we are reaching the limit, as both the RN and I noted a distinctly unusual "access" about one month ago. There is a membrane inside the port, which allows the needle to pass and then self-seals when the needle is withdrawn. On that day, the needle pushed through with an odd sensation and little resistance. This is the first sign that the port is reaching the end of its life.

    We are also at somewhat of a crossroads as far as the ECP treatment I am receiving. I am 15 months into a 24 month max therapy, and its benefits are being weighed. We cannot seem to drop beneath 25/5 milligrams (alternating days) of prednisone to control the GvHD, so we are exploring other possibilities. One choice is treatment with the approved drug Ibrutinib, but that has potentially quite a few undesirable side-effects, especially considering my co-morbidities.

    As to the Interleukin2, it is in clinical trial for chronic GvHD, but I may not qualify, due to too many prior clinical trials. Doctor is checking on that. Interleukin2 itself is a cytokine, or a protein that is naturally expressed on some cell surfaces. It controls/moderates T-Cell activity, and it is the T-Cells that are the bane of my existence. ECP is intended to moderate the effects of T-Cells, so that they will not so aggressively attack the host (my) body.

    The clinical trial I am in currently (KD025) is a completely different type of drug, but has the same intent. Somewhat wistfully, neither ECP nor KD025, either alone or in combination, are as effective as hoped for. So, we essentially open the window and have a look see for other possibilities.

    As my hematologist states, "If we knew what we were doing, it wouldn't be called research."

  4. #764
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    Wow!!! You seem to always have the right thing to say to me and others. I am fumbling at the moment to return that favor. I think I am failing at it though. You have a gift of putting the words out there to be understood. How selfishly grateful I am you are here. Sending all my best vibes your way.
    Zorro
    Age 61
    diagnosed March 20 2013
    High Grade Non-Hodgkin Diffuse B-Cell Lymphoma w/some Burkitt like cells involved
    PET showed spots on liver and enlarged spleen w/hot spots all over Lymp areas
    Treatment started Martch 29 2013 R-ECHOP 6 rounds (1 week on 2 wks home)
    Spinal tap w/chemo for insuarnce (clean spinal fluid)
    neulasta shot after R-ECHop treatment
    June 29 PET clean
    Sepr 12 PET clean
    Nov 11 2013 melanoma removed from back all clear margins 7 inch cut
    Nov 25 confirmed MRSA infection and cleared up with bactrim
    Dec 16 still waiting for wound to close and heal (on his lat and he works out)
    wound from melanoma healed and infection gone, great war scar now
    Cat Scan Dec19th scan was clean
    Feb 20th Ct came back NED "NO ENEMY DETECTED" WHEW!!!
    May 20th 2014 NO ENEMY DETECTED!!!!!!!!! CT clean
    Aug 12 Bloodwork came back as doing what it should be doing. Cat scan in Nov.
    Oct 08 2014 tested positive for hyperthyroid. testing this week to find out more.

  5. #765
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    Quote Originally Posted by po18guy View Post
    Well, my "vortex" port is designed with a lifespan of 200 sticks, or needle accesses. It seems that we are reaching the limit, as both the RN and I noted a distinctly unusual "access" about one month ago. There is a membrane inside the port, which allows the needle to pass and then self-seals when the needle is withdrawn. On that day, the needle pushed through with an odd sensation and little resistance. This is the first sign that the port is reaching the end of its life.

    We are also at somewhat of a crossroads as far as the ECP treatment I am receiving. I am 15 months into a 24 month max therapy, and its benefits are being weighed. We cannot seem to drop beneath 25/5 milligrams (alternating days) of prednisone to control the GvHD, so we are exploring other possibilities. One choice is treatment with the approved drug Ibrutinib, but that has potentially quite a few undesirable side-effects, especially considering my co-morbidities.

    As to the Interleukin2, it is in clinical trial for chronic GvHD, but I may not qualify, due to too many prior clinical trials. Doctor is checking on that. Interleukin2 itself is a cytokine, or a protein that is naturally expressed on some cell surfaces. It controls/moderates T-Cell activity, and it is the T-Cells that are the bane of my existence. ECP is intended to moderate the effects of T-Cells, so that they will not so aggressively attack the host (my) body.

    The clinical trial I am in currently (KD025) is a completely different type of drug, but has the same intent. Somewhat wistfully, neither ECP nor KD025, either alone or in combination, are as effective as hoped for. So, we essentially open the window and have a look see for other possibilities.

    As my hematologist states, "If we knew what we were doing, it wouldn't be called research."


    Well, If I understand this well, nothing here is deadly: a pain in the butt, but aren't we used to that by now. Hang on, this too shall pass. You'll face this as you usually do: like a champ!

    Sending positive thoughts and prayers,

    Marie

  6. #766
    Super Moderator Top User po18guy's Avatar
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    Changing streams in mid-horse

    Another follow up day. Blood work is good, so no real thoughts on the chronic fatigue. The possible terminal ileitis will be scanned in the future, as the tenderness seems persistent. After the exam, doctor thought it best to discontinue the ECP treatment. I have not received treatment for about one month now, and the GvHD seems stable. As well, the marginal function of the port tipped the scales in favor of discontinuing. I will remain in the clinical trial for another month, and stay at the current level of prednisone. We may initiate a 1 mg/month taper in the future, hoping not to provoke an immune response.

    I do not qualify for the Interleukin2 trial, as my kidneys are too compromised. I could receive it off-label, but insurance approval might be a problem. Doctor is considering either Ibrutinib - a BTK inhibitor which is approved for GvHD, Ruxolitinib - a JAK2 inhibitor, or the ever-popular Methotrexate. It was Albert Einstein who first said, "If we knew what we were doing, it wouldn't be called research."

    I can identify with that.
    Last edited by po18guy; 09-27-2018 at 05:02 AM.
    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 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) 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 measureable - 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.
    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.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    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 of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

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

  7. #767
    Super Moderator Top User po18guy's Avatar
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    Monday, I had had my first scans in what, one or two years? Despite a lingering tenderness/soreness in the small intestine, there is no sign of malignancy. That does not mean that the battle is over. There is ample evidence of an enlarged prostate (BPH) impinging on my bladder, causing a thickening of the bladder walls. This I knew about from the prior scans, and is apparently mild and unchanged. At the least it is not worse. My skin is worse than doctor has observed on prior occasions, so more discussion there. The increasing crop of porokeratoses on my right leg is also a topic of discussion - the largest being about 3 centimeters. Doctor suggested a biopsy to determine the etiology (cause) of those growths, to ascertain the potential for treatment. There is a topical form of the immune suppressant drug Tacrolimus that might be tried.

    The fight continues as far as taming my transplanted immune system. We are apparently ceasing the ECP treatment, as its intent was to reduce the need for steroids with an eye toward eliminating them. It has reduced, but not eliminated the need for steroids, despite any improvement attributed to it. As well, the trial drug seems to be producing mainly fatigue. So, what to do? Ibrutinib again came up, as did the new class of drugs known as Jak2 inhibitors. Much to talk about on the follow up appointment on the 24th.

  8. #768
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    I hope you find out all sorts of interesting GVHD options. I had allergic reaction to my CT contrast and it's triggered a full GVHD flare and I'm temporarily back to 40mg/day but hoping to taper quickly. I never used to be allergic to iodine contrast either. So much for going the "safer" route of a CT versus Pet scan.

    In the meantime, I'm getting all sorts of projects done thanks to the Prednisone buzz.
    1/31/14 - Dx T cell lymphoma (ALCL ALK-neg CD30) 50+ nodes Stage IIIB
    4/15/2014 - 4 rounds of CHOP. PET scan clean but two new areas. 5th round of CHOP.
    5/15/2014 - New nodes in neck, fever returns, leave for City of Hope
    5/28/2014 - One round of ICE at City of Hope, admitted to hospital, high fever, nodes in lungs.
    6/15/2014 - 3 rounds of Brentuximab, prep for ALLO SCT.
    7/15/2014 - PET scan shows only one active area under port.
    8/7/2014 - ALLO SCT at City of Hope, brother 100% match
    10/7/2014 - Day 60 PET shows same node 1.5cm under port, everything else clean. Reduce immunosuppressants to get GVL effect.
    11/15/2014 - Day 100 PET shows same node is bigger, and there's a new one.
    11/18/2014 - Brentuximab again 5 rounds, return to Hawaii
    11/25/2014 - GVHD skin rash, back on steroids 30mg/day
    1/13/2014 - GVHD eyelids, back on steroids 30mg/day
    2/9/2015 - First clear PET NED
    2/9/2015 - Chronic GVHD, lips, skin, eyes - steroids 5mg/day
    9/31/2018 - Clear scan - NED

  9. #769
    Super Moderator Top User po18guy's Avatar
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    Alison, I was recently put on 30mg/day for a week to calm my system a bit. I knew there would be a crossroads - just not this many of them!

  10. #770
    Administrator Top User Kermica's Avatar
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    So, what to do? Ibrutinib again came up, as did the new class of drugs known as Jak2 inhibitors. Much to talk about on the follow up appointment on the 24th.
    Well, that really is the $64000 question, poguy, isn't it? What to do, indeed. I hope you and your team can come up with a path that yields all of the positive results you deserve, my friend.

    I sit down with my team on the 22nd to start mapping out where we are going with my transformation problem. I expect that we, too, will have much to discuss.

    Good health,

    kermica

 

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