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Thread: Skin GVHD or prednisone withdrawal symptom?

  1. #11

    Digestion/nausea/appetite issues 1 year after transplant

    Hello to all those fighting the good fight! I have something to run past you.

    Lately, my appetite has been in the pits. I get hungry, but I start eating and suddenly everything looks gross and I feel like gagging. I force myself to eat, but sometimes, I soon have to stop or I will simply upchuck everything I've just eaten. However, an empty stomach just makes me even more nauseous which means I want to eat even less which makes me more nauseous...like a merry-go-round I can't get off. It's not much fun. I've started taking some anti-nausea medication again.

    Up until 6 weeks ago, I had good appetite. I have been on Prednisone since about Day 60, so I have an idea that's why I had such a good appetite and ate a lot. I'm currently tapering Prednisone and have been at about 2.5 mgs for about 6 weeks. The loss of appetite and the 2.5 mgs of Prednisone happened at about the same time, so I'm assuming that's the culprit.

    My question is, is it going to stay that way? For those of you who have had transplant, do you/did you have long-term effects regarding appetite, digestion, or nausea? Did it ever return to normal? If not, what did you do? Any tips on how to get enough nutrients when everything makes me feel like throwing up? Is there such a thing as long-term nausea following high-dose chemo? Are my symptoms a sign of digestive tract GVHD?
    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. #12
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Posts
    10,338
    Since both issues seem to be related, I have merged your other thread into this one. It is easier to keep track of replies that way.

    Sorry to hear of this, but good questions, all of them. It could be a form of chronic GvHD, but your transplant F/U team would want to see you and perhaps run some tests. The anorexia (there are several types and causes) is curious. It could be linked to the artificial stimulation of your appetite when on the higher doses of prednisone, and since you are tapering, your cortisol levels are probably lower and natural appetite has not been awakened for some reason. There may be some blood chemistry issues that need to be looked at.

    I have experienced a similar disinterest in eating, but that was either while on a trial drug, or soon after transplant. An appetite stimulant, such as Marinol, might be considered. I used it for a week or so in hospital to jump-start my appetite and was OK after that. Anorexia has many potential causes:

    https://en.wikipedia.org/wiki/Anorexia_(symptom)

  3. #13
    Thanks for merging them.

    Huh. Didn't think about it being kind of like anorexia. I also didn't realize anorexia can be a side effect of various drugs or a symptom of various diseases. The kind we usually hear about is the psychological disorder kind. While I'm not putting the disorder kind past me (God knows I've had more than enough psychological issues due to some past trauma!), I don't display any of the other symptoms of the "classic" anorexia nervosa.

    After I left the doctor I was bummed that I had forgotten to mention my eating issues and my achy legs and knee joints! I was focused on the skin stuff and forgot to mention the rest. I think I will wait until my regular doctor is back to mention it. If I take anti-nausea meds, it's not nearly as bad. I'm not losing weight, so I'm managing to eat enough calories. It's just not fun to have to force myself to eat those calories.
    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. #14
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,338
    I had treatment-related anorexia as a symptom for 5 years while I was on Romidepsin, but it lasted 2, maybe 3 days after treatment, then faded. As to joint pains, do you have any viral activity? I recently had some hip tenderness, and the immune system's inflammatory response can produce joint pain. What troubled me until I saw the F/U folks is that an allo transplant can produce avascular necrosis. Essentially, the veins feeding certain joints simply die off and the joint then deteriorates. It was a relief that my case was apparently caused by one of the two viruses that I was fighting at the time.

    It is helpful to write a list of questions for doctor (then actually remember to take it!). They are often in a hurry, with patient case loads and we simply forget to ask.
    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.

  5. #15
    Experienced User
    Join Date
    Jan 2015
    Posts
    65
    Jackie,
    I had Acute GVHD of gut about 10 days after transplant. I couldnít keep any thing down. I stopped eating altogether and was put on a TPN line. They whisked me off for endoscopy as that much nausea was not normal and Acute GVHD in upper GI was confirmed.

    Your nausea and lack of appetite is not normal. Iíd also be suspicious about the joint pain. I used to have an app from BeTheMatch.org that showed all the different manifestations of GVHD. It may still be in App Store.

    I worry that since your symptoms all started with the steroid taper, they are all a potential manifestation of GVHD.

    It may be that 2.5mg a day is too low a dose. Whenever I had a flare, Iíd go back to 10mg a day and then taper back down again.

    There seems to be some magic about 5mg a day for me. I also have had success alternating 2.5mg every other day. Or even 5mg every third day. Donít be discouraged if you have to bump up steroids again. It may just be you havenít found the best lowest dose for you yet.

    Alison

  6. #16
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,338
    5mg daily is a dream for me. 27.5/5 altermating is my current dosing. Although, if I dare say, the experimental drug "may" be working well in concert with ECP. On my high dose days, I have virtually zero itching. It had been touch and go even at the 27.5 dose.

    Consider a clinical trial such as the Kadmon KD025 that I am enrolled in. Be on the cutting edge of GvHD control. Make a difference.
    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. #17
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Posts
    11,461
    I too am tapering Pred and now going down 1mg per fortnight and currently on 9mg. I also at times have issues with nausea and have virtually no appetite. Light headedness and some breathlessness happens at times too. ( I have had gvhd of skin and lung though a lung specialist does not believe I had lung gvhd but steroid damage, no idea who to believe for that one) Each time with the gvhds I had a big increase in Pred which sapped my muscles again.
    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

  8. #18
    I thought I'd update this. With all your input, I decided to call my doc and tell them about my eating and nausea issues. They gave me permission to raise my Prednisone dosage back to 5 mgs. I've been on that dosage for almost a week now, and it's much better. I still don't eat large quantities, but I no longer just want to vomit anymore. Food is actually starting to taste good again! I was even able to eat a salad yesterday and today. I just try to eat often to make sure I get enough calories. I've taken to setting an alarm on my phone so I'm reminded to eat. I also keep lots of snacky things around so I can grab something quick if needed. It's all helping.

    I'm still having the joint and bone pain from knee to ankle. Sometimes it aches; sometimes it throbs. Sometimes I have shooting pains. My legs also feel really weak. I can walk, but I'm a little scared they will collapse under me sometimes. I have an appointment with my doctor next week. I will be discussing this, and other issues, with him.

    Thanks to everyone for the advice. It was helpful.
    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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