A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Results 1 to 3 of 3

Thread: Best ALL Center/physician

  1. #1
    Newbie New User
    Join Date
    Sep 2019
    Posts
    1

    Best ALL Center/physician

    My father is 79 y/o, and was diagnosed with CLL about 10 years ago. He is otherwise in excellent physical condition, he works out and plays tennis most days, and has an excellent diet. He has never needed any treatment for his CLL other than his healthy lifestyle. Yesterday, we learned from his local doctor here in Florida my father is now suffering from ALL. I'm not aware of any specifics other than his WBC is up to 28k. Upon learning of his CLL diagnosis years ago, we researched the best CLL doctor to see and came up with Dr. Michael Keating at MD Anderson. We contacted MDA today but unfortunately Dr. Keating is no longer practicing, and I'm not sure if he would be as knowledgeable on ALL anyway. So, once again I am searching for the hospital and physician who will give my father a chance for the best possible outcome. I imagine a return to MDA is likely, I've read on here that Dr. Kantarjian is tops in this field (although may not be available to new patients), and Dr. Nicholas Short specializes in ALL as well. What other centers and /or physicians should we be considering? TIA!

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,449
    Sorry to hear of this. In Florida, or perhaps anywhere in the south, I would head straight to Dr. Lubomir Sokol at Moffitt. At least for a consultation of not treatment. I have met him and listened to a presentation he did at a lymphoma seminar. He is a brilliant doctor and researcher.
    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
    Experienced User
    Join Date
    Dec 2017
    Posts
    81
    My husband has been treated for ALL at Moffitt since 2014. Over five years with Dr Bijal Shah. Yes, ALL and hes in remission.

 

Similar Threads

  1. Looking for diagnosis, consulting with internal medicine physician who is unsure..
    By Danni.lea in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 16
    Last Post: 12-21-2012, 04:43 AM
  2. Physician followup after RRP
    By Livinit in forum Prostate Cancer Forum
    Replies: 1
    Last Post: 08-30-2008, 09:39 PM
  3. Best Lung Cancer Center in Southern California?
    By prkerber in forum Lung Cancer Forum
    Replies: 2
    Last Post: 01-11-2007, 12:18 AM
  4. Best Eastern Cancer Center
    By Mia in forum Stomach and Esophageal Cancer Forum
    Replies: 2
    Last Post: 05-01-2006, 05:50 PM
  5. Replies: 0
    Last Post: 05-23-2005, 04:00 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •