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Thread: Refractory Hodgkins Lymphoma

  1. #1
    Senior User Chef's Avatar
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    Refractory Hodgkins Lymphoma

    Well, it turns out that ABVD stopped working about half way through my treatment of six months. I could feel the largest node shrinking for the first five days after chemo then it would start growing again. The onc and nurses were pretty sure it was scar tissue but I knew something was up. Not only was I feeling rough from treatment but on my healing weeks the beast was rearing it's ugly head and continuing to grow at the same time making me feel even worse.

    I had my pet scan last week and called for an emergency appointment to find out why I felt so rough. My skin problems returned, major node flaring, stomach in knots, runny nose, sweats, diarrhea etc, etc... My new onc informed us that the beast was actually on the move. Now not only is it in the leg nodes and diaphram but also in my right armpit. My fiance and I were supposed to get married in December but that's off, (again). I was told that the next line off therapy would be radiation but it's too far spread far that.

    I feel like a life line has been taken away because now it's straight to transplant. To make matters worse, the chemo treatment weakened my teeth and half of a tooth broke off the other day and now it has to be removed today. Went off blood thinners for two days now, day of, and day after. This postpones my new treatment by two weeks, not cool.

    I'l be starting GDP, (gemcitabine, dexamethasone, cisplatin) in a few weeks on a three week cycle. Actually, because I don't do well on dex they decided on prednisone which I've taken 50mg for the past 5 days already. I'm not sleeping well and have a painful rash on legs and stomach, (nice). If this protocol doesn't work then I'll be sent to NIH in Maryland for clinical trials. I'm told they will cover the treatment aspect but not room and board.

    So, we meet with the transplant team in two weeks for options. My onc seems to think that an auto SCT is what's next. I'm not liking the odds anymore but will remain calm and get affairs in order before the next round.
    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 {ALCL ALK-} 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-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  2. #2
    Administrator Top User Kermica's Avatar
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    Chef, I am very sorry to read that your struggle with the beast is presenting new challenges. It is my hope that the SCT will be successful and you will be on a path to wellness soon. Hang in there.

    Good health,

    kermica

  3. #3
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    Hi, sorry to read this and I know you half expected it from previous posts but it still comes as a shock, especially as it refractory rather than residual disease that still needed treatment. All being well this is still treatable and its finding the right chemo combination to get you into remission to ensure the transplant is successful. If it does not the are still other options to get you there, some have found Bendamustine works and its starting to be used with some HL patients. One of the drugs that has been successful when other treatments have failed is Brentuximab and I know a few who have had successful transplants on the back of this drug, here is a link to a video on it plus the are a few research papers out there http://www.oncologytube.com/v/103467...n-lymphoma#pic

    My advice would be check this is the right chemo combination and ask how you will be monitored to ensure its working and what is plan B if its not and throw these drugs into the conversation and see what they say and how they would use them.

    Others hopefully will have advice too about chemo regimes and how best to approach refactory disease.

    We are all still here to help and support in what ever way you wish, just let us know.

    I can also give you a link to a stem cell transplant group in the UK which is predominately HL patients if you think it will be of benefit.

    sending some positive vibes your way and really sorry to read it has meant the wedding is cancelled, having set milestones myself post treatment, I can imagine how big that disappointment is.

    john
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  4. #4
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    Quote Originally Posted by Chef View Post
    So, we meet with the transplant team in two weeks for options. My onc seems to think that an auto SCT is what's next. I'm not liking the odds anymore but will remain calm and get affairs in order before the next round.
    I still like the odds! After all lies, damned lies and statistics. That said this sucks. I suspect it is never a good time to have a stem cell transplant but I'm sorry to hear that card is being dealt and the wedding is to be postponed. And teeth issues. Argh. My teeth are shot from chemotherapy as well (well two visible gaping holes & probably a bunch of others). What did help/keep things at bay during treatment was 5000ppm flouride toothpaste (stuff with 1.1% w/w Neutral Sodium Flouride). I should have used it from the beginning - stuff dry mouth toothpaste. But be guided by your dentist, there is a potential for a 'flouride bomb'. It's when the enamel becomes too hard due to excess flouride & there is still decay in the fissures which keeps going on unbeknownst to random dentists or something like that!

    Anyway, I hope the rash improves & sending you some positive vibes! (that's green for positive apparently; and the lovely, if somewhat large teeth)

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Posts
    10,342
    Crap, dude! We are here, as you well know. Sending prayers up on your behalf.
    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.

  6. #6
    Senior User Chef's Avatar
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    Mar 2016
    Posts
    269
    Quote Originally Posted by Kermica View Post
    Chef, I am very sorry to read that your struggle with the beast is presenting new challenges. It is my hope that the SCT will be successful and you will be on a path to wellness soon. Hang in there.

    Good health,

    kermica
    Thank you very much Kermica. I got a second opinion today for good measure and have been told to stay the course of the upcoming decisions. The SCT isn't an ideal next step to my mind but will stay positive and focused.
    Last edited by Chef; 10-18-2016 at 10:56 PM. Reason: Very tired
    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 {ALCL ALK-} 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-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  7. #7
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    269
    Quote Originally Posted by johnr View Post
    All being well this is still treatable and its finding the right chemo combination to get you into remission to ensure the transplant is successful. If it does not the are still other options to get you there, some have found Bendamustine works and its starting to be used with some HL patients. One of the drugs that has been successful when other treatments have failed is Brentuximab and I know a few who have had successful transplants on the back of this drug


    I can also give you a link to a stem cell transplant group in the UK which is predominately HL patients if you think it will be of benefit.


    john
    John,

    Yes please do send the link along, I would appreciate it. There are national guidelines here that are very limited/strict, as to what an onc can or cannot do re protocols. The states is my best option for these, however very costly. Chemoman mention in another thread the drawbacks of trials which I have read up on, wow it's crazy, blind vs double blind vs placebo effect etc. Hmmm, as always thanks for the heads 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 {ALCL ALK-} 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-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  8. #8
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    269
    Quote Originally Posted by Coffee View Post
    I still like the odds! After all lies, damned lies and statistics. That said this sucks. I suspect it is never a good time to have a stem cell transplant but I'm sorry to hear that card is being dealt and the wedding is to be postponed. And teeth issues. Argh. My teeth are shot from chemotherapy as well (well two visible gaping holes & probably a bunch of others). What did help/keep things at bay during treatment was 5000ppm flouride toothpaste (stuff with 1.1% w/w Neutral Sodium Flouride). I should have used it from the beginning - stuff dry mouth toothpaste. But be guided by your dentist, there is a potential for a 'flouride bomb'. It's when the enamel becomes too hard due to excess flouride & there is still decay in the fissures which keeps going on unbeknownst to random dentists or something like that!

    Anyway, I hope the rash improves & sending you some positive vibes! (that's green for positive apparently; and the lovely, if somewhat large teeth)
    Hi Coffee,

    Firstly, congrats on achieving remission. That is such wonderful news!!!

    It most definitely sucks on the wedding front, very dis-heartening but we have decided that if the SCT works we just make a break for Hawaii as soon as we can (no more dates), lol.

    I got the tooth yanked and find out in a few days how it's healing. I will ask about your advice then, makes sense to me. The rash subsided within 36 hours of stopping pred so I know it's the culprit. I'll have to mention that to my onc. Thanks for the positive vibes.

    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 {ALCL ALK-} 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-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  9. #9
    Senior User Chef's Avatar
    Join Date
    Mar 2016
    Posts
    269
    Quote Originally Posted by po18guy View Post
    Crap, dude! We are here, as you well know. Sending prayers up on your behalf.
    Po, thank you very much. The forum provides many avenues of hope, knowledge and understanding that I find extremely valuable. Thank you for the prayers!
    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 {ALCL ALK-} 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-} CD30 4/26/17
    Restart Adcentris 5/18/17
    High dose Chemo/MTX/Total Body Irradiation for three days-twice daily 8/17/17
    Donor Allo Transplant 8/23/17
    Pet scan NED 12/01/17

    的n the middle of difficulty lies opportunity."

  10. #10
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,342
    Quote Originally Posted by Chef View Post
    Po, thank you very much. The forum provides many avenues of hope, knowledge and understanding that I find extremely valuable. Thank you for the prayers!
    As to plans that are now seemingly impossible, remember that you must be alive to have complaints.
    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.

 

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