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Mom's diagnosis
I signed up today very worried about any mother’s cancer diagnosis and needing answers to a question - only to find that the head and neck cancers forum isn’t accepting new posts”?? You have to be kidding me. I didn’t have time to waste. It feels like my email address has been stolen for spam purposes which is all I got from even perusing this website - plus my time stolen.
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Super Moderator
Top User
Not to worry. Must be a technical glitch. Anyway, do update with your concerns!
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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Super Moderator
Top User
Angel123, I moved your post to Head and Neck Cancers. You should be able to post there now.
https://www.cancerforums.net/threads...286#post391286
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.
-
Moderator
Top User
Hello, Angel123-
I am sorry that you did not receive the user experience you were expecting, especially under the stress of your mother's diagnosis. I can assure you that we do not harvest emails or other personal information from our users, nor do we sell them to advertisers.
I am a 6+ year survivor of head & neck cancer, and there are many others on these forums that would be happy to answer whatever questions you have. I hope that we can be of assistance to you.
Age 54 Male
early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
3/7/13 - CT-scan inconclusive, endoscopy negative
3/9/13 - FNA of neck mass
3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
3/25/13 - CT-PET scan reveals no other active tumors
3/26/13 - work/up for IMRT
4/1/13 - W1, D1 of weekly cetuximab
4/8/13 - W1, D1 of IMRT
5/20/13 - complete 8 week regimen of weekly cetuximab
5/24/13 - Complete 35-day regimen of daily IMRT
mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
Spring 2014 - No signs of cancer
Spring 2015 - NED
Spring 2016 - NED
Spring 2017 - NED
Spring 2018 - NED
Spring 2019 - NED
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