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Thread: Misdiagnosed from Hodgkins to T-Cell Alk NEG

  1. #131
    Super Moderator Top User po18guy's Avatar
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    Shawn, so good to hear from you. Baby shots? What are those? I'm almost 3 years out and no chance of them yet, since i am still too compromised. Hoping to avoid polio, not to mention measles, mumps, rubella, chicken pox etc. etc. etc...! Dry mouth and eyes are def GvHD. Watch your teeth, as they can start chipping. You know to keep watch for deteriorating vision, tight skin, joint pain and blah blah blah.

    Blood numbers are a roller coaster in both the short and long term. Your marrow has been brutally attacked and recovery will take some time. In my case, probably the rest of my life - whatever that is.

  2. #132
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    Quote Originally Posted by po18guy View Post
    Shawn, so good to hear from you. Baby shots? What are those? I'm almost 3 years out and no chance of them yet, since i am still too compromised. Hoping to avoid polio, not to mention measles, mumps, rubella, chicken pox etc. etc. etc...! Dry mouth and eyes are def GvHD. Watch your teeth, as they can start chipping. You know to keep watch for deteriorating vision, tight skin, joint pain and blah blah blah.

    Blood numbers are a roller coaster in both the short and long term. Your marrow has been brutally attacked and recovery will take some time. In my case, probably the rest of my life - whatever that is.
    Thanks, Jim.

    Jeez, I thought those shots were standard for everyone, especially the pneumonia one? How are you still compromised so much so that they wont administer the shots for you, if you don't mind me asking? Sorry if that seems like a dumb question but I don't get it?

    My teeth are chipping here and there and have not held up as well I'd hoped, that's for sure! My vision isn't too bad but I have noticed it's worse. I lost some lung function and the next test is in a month so they'll look for GvHD there again. Oddly enough my joint pain has improved from every taper of cyclo, yet I still have some lingering.

    You are one of the strongest people I know, so that'll be many, many moons from now Sir!
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  3. #133
    Super Moderator Top User po18guy's Avatar
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    Well, you're not even supposed to have GvHD with a haplo transplant, but as you may have noticed, I'm special. The ECP light treatment is working, at least to a degree, as there is no way that I could have tapered off to 27.5 mg of pred without it. And, we are waiting for the experimental drug to take effect. 3-6 months is the last I heard. As it is, I'll be sleeping for most of that. Still immune suppressed on prednisone, as it is the absolute worst immune suppression drug - except for all those others. No immunizations or allergy shots as my immune system would probably not even react. I got a flu shot mostly for drill. All that you describe is clearly GvHD, and I would hope that they are on your case, as you have quite a lifespan ahead of you.

    Have they mentioned anything about clinical trials for GvHD? At this point, almost anything they throw at it will help to some degree, and most of it is pretty benign as compared to what we have had.

  4. #134
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    Quote Originally Posted by po18guy View Post
    Well, you're not even supposed to have GvHD with a haplo transplant, but as you may have noticed, I'm special. The ECP light treatment is working, at least to a degree, as there is no way that I could have tapered off to 27.5 mg of pred without it. And, we are waiting for the experimental drug to take effect. 3-6 months is the last I heard. As it is, I'll be sleeping for most of that. Still immune suppressed on prednisone, as it is the absolute worst immune suppression drug - except for all those others. No immunizations or allergy shots as my immune system would probably not even react. I got a flu shot mostly for drill. All that you describe is clearly GvHD, and I would hope that they are on your case, as you have quite a lifespan ahead of you.

    Have they mentioned anything about clinical trials for GvHD? At this point, almost anything they throw at it will help to some degree, and most of it is pretty benign as compared to what we have had.
    Ok, right, gotcha. I realized while reading that, yes, my doc said "once your off immuno's then we do shots", I forgot, my bad. I keep asking if my symptoms are related to GvHD but I should probably push a bit more. I think they are mainly concerned with rashes, lumps, gut and lung issues, all which have been minor to none thus far (no lumps, that I know of).

    I do have eczema of the face which I never had before which requires daily moisturizing otherwise I get red blotches and it burns a bit! Once moisturized it goes away for a day sometimes two. Hydro cortisone has been recommended but I'm still using cream for now unless it worsen's.

    No mention of clinical trials but now you've lit a fire, perhaps I should get that ball in the air and least get as much info as possible as to what's available in Canada right now. Hmmm...
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  5. #135
    Senior User Chef's Avatar
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    Quote Originally Posted by po18guy View Post
    The ECP light treatment is working, at least to a degree, as there is no way that I could have tapered off to 27.5 mg of pred without it. And, we are waiting for the experimental drug to take effect. 3-6 months is the last I heard. As it is, I'll be sleeping for most of that.
    That is great news that it's working! Sleeping? How, standing with your eyes wide shut - LOL? Man, even on low doses it had me wired for sound. Does the body just get used to it? 3-6 months is a cakewalk considering all you've dealt with, my hope is that this really takes care of it once and for all, you deserve so much more man.

    Wait a minute, where the heck is your Sig? HuH?
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  6. #136
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,008
    Sig eats bandwidth for lunch. Steroids have me ragin' but the ROCK2 inhibitor (cool name, huh?) has me fatigued and sleeping. Like shooting speedballs. I hope it turns out better than that.

    OK, this one time.
    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.
    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).
    To date: 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. #137
    Senior User Chef's Avatar
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    Quote Originally Posted by po18guy View Post
    Sig eats bandwidth for lunch. Steroids have me ragin' but the ROCK2 inhibitor (cool name, huh?) has me fatigued and sleeping. Like shooting speedballs. I hope it turns out better than that.

    OK, this one time.
    LOL, I figured that might of been the reason why, just doesn't look right tho' but I get it! Approaching 10k posts, wow, that's a bit of bandwidth and a whole lot of HELP!!!!

    The ROCK2 haha, next it'll be doing baywatch 2 rotfl. Speedballs, crazy, wasn't that the choice of truckers for eons? Probably still is? Good thing it's the legal version otherwise you'd have to lock yourself up
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  8. #138
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,008
    I have close to 40K posts on various forums. Yeah, I'm retired.
    Listening to a dyno cover of "Call Me The Breeze" https://www.youtube.com/watch?v=okICJaAyxHo
    One can dream.
    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.
    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).
    To date: 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.

  9. #139
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    233
    Quote Originally Posted by po18guy View Post
    I have close to 40K posts on various forums. Yeah, I'm retired.
    Listening to a dyno cover of "Call Me The Breeze" https://www.youtube.com/watch?v=okICJaAyxHo
    One can dream.
    Whoa!!!

    Great song, I have the exact same guitar which I bought a month ago. I've never had an SG and while the neck is pretty chunky it really does make me play different than I normally would. Guess I should learn this tune lol. Each instrument has it own mojo which makes it cool for writing a variety of different tracks.
    Dx NSHL StageIIIA
    CT {groin 6.8 x 3.3 cm} abdomen nodes, enlarged spleen 2/07/16
    Bone marrow, Colonoscopy, Gastroscopy biopsies (-)
    Lung & Heart tests Good.
    Pet scan Worrisome bone marrow 3/17/16
    ABVD 6 cycles started 3/31/16
    Interm Pet (+) 5/19/16
    Stop ABVD 9/01/16
    Pet (+) 10/04/16
    Salvage GDP 10/27/16
    Misdiagnosed from Hodgkins to TCELL ALK NEG stage 4B 12/01/16
    Adcentris 12/05/16 ~ 3/07/17
    Lumbar, Tri-fusion line, G-CSF, Collection 3/17/17 ~ 3/18/17
    Auto stopped due to infections, sent home to wait 3/27/17
    Developed 12 tumors on base of skull, patho = ALK-NEG CD30 4/26/17
    Restart Adcentris 5/18/17
    MUD Allo 8/23/17
    Pet scan NED 12/01/17

    “Each morning when I awake, I experience again a supreme pleasure - that of being alive"

  10. #140
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,008
    Tom is his name. Sells solo lessons for $6 ea. His playing is just sick.

 

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