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Thread: Skin GVHD or prednisone withdrawal symptom?

  1. #1

    Skin GVHD or prednisone withdrawal symptom?

    The past two days I have been incredibly itchy! All over by times, but it's worst on my back. Nearly drives me nuts! I'm currently tapering Prednisone. I'm down to 2.5 mgs. Some reading I did said rash and itchiness can be a side effect of prednisone withdrawal. Did anyone here experience that?

    The other possibility, of course, is GVHD raising its ugly head now that we are backing off the immune suppression. The doctor and I are both being vigilant during this time. However, my understanding is that skin GVHD is accompanied by a rash and itching. I can't see any rash. I'm just itchy!!! Those of you who have had GVHD of the skin, can you chime in on that rash bit? Thanks.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Tapering from prednisone normally produces mood swings and, in some cases, depression. If GvHD is flaring, despite the itch, it can be a good sign, as it indicates that your immune system is sufficiently active to locate and kill any remaining lymphoma cells - the "Graft-versus-Lymphoma" effect that is desired. I have had both itch and rash in varying degrees since transplant in July, 2015. Topical steroids help, such as the class 1 steroid Clobetasol. I use the foam and it helps. NOT cheap. I began at 95mg daily and am now down to 27.5 alternating with 5mg. I am at the limit, as my itch has been flaring lately. I am receiving ECP and have just begun a clinical trial of an experimental drug for GvHD.

    One other possibility is demodex (skin) mites. We all have them, but our immune systems keep them in check. When immune suppressed, they can over populate and then itching and rash occur. A skin punch biopsy is the certain method of determining if that is occurring. As well, a skin punch will also reveal the basic nature of the inflammation in the skin. They are not a big deal and it might be helpful in diagnosing the problem.

    To control skin mites, there is Ivermectin, a oral pills which is taken (according to body weight) on two successive weeks. As well, Tea Tree oil helps to control them. Shampoos and body washes containing the oil are available at most drug stores and at Trader Joe's and ULTA.
    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.

  3. #3
    Funny, that. I had/have nearly all the other (somewhat rarer) symptoms of prednisone withdrawal except mood swings, depression, or irritability! Achiness, joint pain, fever, loss of appetite, weakness, nausea, diarrhea, abdominal pain, dehydration, etc. My brain was fine, but the rest of me wasn't! By now, they've calmed down considerably. Mostly what I have now is joint pain and achiness with a bit of abdominal pain/diarrhea off and on. However, I've been at 2.5 mgs soon for a month. You'd think it would level out sooner rather than later....I hope so anyway.

    As to the itchiness, will ask my doctor about skin GVHD and skin mites and see what he has to say. I know that GVHD isn't all bad, especially for me since the lymphoma came back after transplant. It's just that I had a bad experience with acute ocular GVHD: terrible pain, going blind for a bit, in danger of losing my sight, etc. Don't exactly want a repeat.

    It's also possible that the itchiness is also tied to very dry skin. As part of my conditioning regimen, I had Busulfan, which seriously messed with my skin: discoloration, peeling, extreme dryness. It's hard to stay on top of it.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,338
    Have you been scanned recently? Asking just in case. For anti-pruritis, I have been mixing CeraVe with Kenalog (triamcinolone) cream and using Sarna lotion and/or a German lotion called Penaten. I do this after the topical steroids and it gives a lot of relief. I will try to scare up another member who remains on long-term prednisone (5mg) and see what the experience there has been. Oftentimes, simply moisturizing the heck out of your skin truly helps.
    Last edited by po18guy; 03-10-2018 at 05:28 AM.

  5. #5
    That's fine. I understand why you are asking. I was scanned about six weeks ago on Jan. 25. CT scan showed that the mass in my center chest is shrinking nicely: 50% reduction since Sept. 27, 2017. If it was growing suddenly, I'd most likely know it. All my relapses except one I knew it was back before we ever did a scan because of the symptoms. The achiness, joint pain, nausea, etc. that I'm having lately are not at all similar to the lymphoma symptoms I've have before.

    Now, given the nature of our beasties, I know anything can happen, but mine has been a remarkably well-behaved beastie until now except for the pesky relapses. It always comes back in the same spot (center chest) and presents with the same symptoms. For it to run off the rails 6 weeks after a good scan seems fairly improbable. So, I'm not fearing any news on that front.

    I found out soon after transplant that symptoms on us chimeras take the doctors on a treasure hunt to find out what is causing them. When patients are as complicated as we are, it becomes a matter of trial-and-error to arrive at the most likely diagnosis. Anyway, I shall be presenting my doctor with this new info regarding my bothersome itch. Let the treasure hunt begin! Meanwhile, I will saturate my skin and see if some relief follows.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,338

    Pain relieves itch

    The sad fact is that pain and itch are transmitted by the same neurotransmitters. So, the solution will be easy, right? Just pop some pain killers and it's all gone. No such luck. It remains very mysterious as to why we can stop pain but cannot stop itch. Well, the pain signal overrides the itch, so when it becomes unbearable, I will semi-scald myself in the shower so that the itch goes away (NOTE: not recommended by anyone). Then, I hit it with cool water, and steroids/lotion. I can get several hours of relief that way.

    Absolutely correct in that we are apparently infinitely complicated creatures. As the immune system is studied, it is realized that it is astoundingly complex, with probably billions of immune interactions occurring each moment of our lives.
    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
    Experienced User
    Join Date
    Jan 2015
    Posts
    65
    Hi Jackie,
    In my experience, any sort of weird skin symptom is GVHD. The first skin reaction I had, my dermatologist did a biopsy and GVHD was confirmed. Over the last 3 years, Iíve noticed that I can get flares but these have become less severe and happen less often the further I am from transplant.
    I have an arsenal of topical steroids in various strengths for the skin. My GVHD tends to occur in the same spots. 1-2Ē in diameter. Unlike my first episode which was all over my arms and legs. The most effective treatment for me is Clobetasol. I use it sparingly but one application can settle things down for weeks to months. I also have topical Tacrolimus that I use sometimes on my lips. And Tobradex for my right eye - GVHD is only in one eye. And also Restasis for eyes and a steroid mouthwash.

    Iím on 2.5mg after 3 years so you are doing really well to be so low. I hoping to still go to zero one day.

    I only wear cotton clothes, keep my skin covered, large hats to avoid the sun as it can exacerbate GVHD.

    I had good luck with Brentuximab so I hope you do too. I had to take 5 doses after SCT. Make sure you watch for peripheral neuropathy - see if they can lower dose or increase interval between doses if PN gets bad.

  8. #8
    Experienced User
    Join Date
    Jan 2015
    Posts
    65
    Hi Jackie,
    In my experience, any sort of weird skin symptom is GVHD. The first skin reaction I had, my dermatologist did a biopsy and GVHD was confirmed. Over the last 3 years, Iíve noticed that I can get flares but these have become less severe and happen less often the further I am from transplant.
    I have an arsenal of topical steroids in various strengths for the skin. My GVHD tends to occur in the same spots. 1-2Ē in diameter. Unlike my first episode which was all over my arms and legs. The most effective treatment for me is Clobetasol. I use it sparingly but one application can settle things down for weeks to months. I also have topical Tacrolimus that I use sometimes on my lips. And Tobradex for my right eye - GVHD is only in one eye. And also Restasis for eyes and a steroid mouthwash.

    Iím on 2.5mg after 3 years so you are doing really well to be so low. Iím hoping still to go to zero one day.

    I only wear cotton clothes, keep my skin covered, large hats to avoid the sun as it can exacerbate GVHD.

    I had good luck with Brentuximab so I hope you do too. I had to take 5 doses after SCT. Make sure you watch for peripheral neuropathy - see if they can lower dose or increase interval between doses if PN gets bad.

    You have a great attitude and I wish you well.

    Aloha,
    Alison
    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. #9
    Thanks, Alison. Yes, Brentuximab is working well for me. 🤞We didn't know if it would or not. The last biopsy showed a weak expression of CD30, so we were hoping that at least it would keep the beastie controlled. When the CT showed 50% reduction of tumor mass, it was a wonderful surprise.

    So far, I've had 6 cycles and still no problems aside from PN. I'm grateful! So far, the PN isn't bad. The numbness and tingling is only in my fingers down to about the first joint. So far, it's not worse than I had with R-CHOP in 2012 and it's not interfering with daily life. My feet so far are fine.

  10. #10
    So, update on my itchiness and skin issues. My doctor is out of the country until end of March, so I saw his covering doctor today. They looked at my skin and said that I seem to have mild skin GVHD, Grade 1 or less. I still have no rashes on arms, legs, or back, but I do have dry, scaly spots on my face and a spot on my right hand. Oddly enough, none of those spots are itchy!

    Anyway, they prescribed me Atarax, an antihistamine, for the itchiness. I haven't used it yet as the itchiness has mostly been annoying rather than nasty. Plus, antihistamines make me feel drugged, and I hate that. They also prescribed me methylprednisolone as an emergency steroid if I break out in bad rash and a steroid cream for any trouble spots. They instructed me as to which OTC creams and soaps to purchase. They also told me to avoid strong sunshine and cover up when I'm outside.

    I'm thankful it's mild and actually kind of glad I have it. Perhaps it will increase the GVL effect and keep the beastie under control. I can hope, at least!

    On other fronts, I have mild GVHD of the liver according to my labs today. All liver enzymes are elevated slightly except bilirubin. This isn't anything new, as I've had elevated levels for a few months. We just keep an eye on it. So far, 2 mgs Tacrolimus and 2.5 mgs Prednisone seem to be doing the trick of keeping the GVHD leashed.
    5/12 Dx at age 24 with DLBC NHL Stage 2B presenting as <10 cm tumor in left lung
    5/12-9/12 R-CHOP x 6. Followup 3 month scans
    4/14 Relapse
    6/14-7/14 R-ICE x 2 inpatient
    8/21/14 BEAM and auto transplant
    10/14-11/14 Radiation and viral pneumonia
    2/15 Relapse
    3/15-9/15 GVD-R x 7
    10/15 Dx restrictive lung disease.
    1/16 Relapse
    2/16-9/16 Nivolumab x 8
    9/16 Relapse
    10/16-1/17 ESHAP x 3 inpatient
    1/17 Diagnosis changed from DLBC to PMBCL
    2/21/17 Bu-mide. Myeloablative allo transplant. Sibling donor 8/8
    3/9/17 Discharge on Day +16 to Hope Lodge
    3/27/17 Readmitted for croup, BK virus, acute ocular GVHD.
    4/17/17 Discharged to my home
    5/1/17 Readmitted. Dx pneumonia
    5/10/17 Discharged on 2 liters supplemental oxygen.
    8/17 Readmitted briefly for a flareup of pneumonia.
    9/27/17 Relapse. PET confirmed.
    11/1/17 First treatment of Brentuximab Vedotin. Total of 16 planned.
    1/25/18 50% tumor reduction!

 

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