A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 2 of 2 FirstFirst 12
Results 11 to 19 of 19

Thread: Stomach Pains

  1. #11
    Experienced User
    Join Date
    Sep 2012
    Posts
    89
    Appendix and rest of Organs appear fine... he is getting a colonoscopy tomorrow at noon... Like I said , the abdomen pain is very random, non food or drug related.. ( He is taking zero meds) He did NOT have a BMT/SCT … just chemo / pediatric protocol starting 2012 -2015
    Son Jacob - 21 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015

    Post Treatment issues:
    2016 - diagnosed with Necrosis of both knees ( in femur)

  2. #12
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,743
    Did Jacob have any involvement outside the marrow? It is not unknown in T-ALL, therefore he might have developed some scar tissue. I have scar tissue in my ileum and it occasionally causes some "noise." Tenderness - not really pain - just enough to let me know it is there.

  3. #13
    Experienced User
    Join Date
    Sep 2012
    Posts
    89
    Not sure? The colonoscopy was done yesterday, and the GI doc stated he was pretty certain there was no lymphomas.. ( The Lymphnode glands were normal size. ) - huge relief.... GI doc said he has patchy erythema in terminal ileum. Did biopsy and sent to path... said its vert treatable
    Son Jacob - 21 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015

    Post Treatment issues:
    2016 - diagnosed with Necrosis of both knees ( in femur)

  4. #14
    Experienced User
    Join Date
    Sep 2012
    Posts
    89
    possibly the beginnings of Crohn's disease , but not sure.
    Son Jacob - 21 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015

    Post Treatment issues:
    2016 - diagnosed with Necrosis of both knees ( in femur)

  5. #15
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,743
    Well, we can hope not! As much as your son has been through, there is bound to be some collateral damage and associated symptoms, but an autoimmune disease is not a good thing. His marrow/immune system has been under assault - first from the leukemia and then from the chemotherapy. It will simply take some time to recover and normalize once again - if "normal" can even be applied. With each case being unique, sadly, there is often little comfort to be found in the experience of others.

    I don't know what it is about the ileum, but scar tissue does seem to upset its function from time to time for no apparent reason.
    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 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 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 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).
    09/18 Due to refractory GvHD, treatment with Imbruvica (Ibrutinib) or clinical trial of Interleukin2 being considered.

    To date: 1 cancer, relapse, 2 cancers, then 3 cancers simultaneously, 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.

  6. #16
    Experienced User
    Join Date
    Sep 2012
    Posts
    89
    The GI dr. office called, and said everything looks good ! We will chalk it up to residual from chemo...
    Son Jacob - 21 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015

    Post Treatment issues:
    2016 - diagnosed with Necrosis of both knees ( in femur)

  7. #17
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,743
    At least there was good news in the bad. Collateral damage can be the cost of living.

  8. #18
    Experienced User
    Join Date
    Sep 2012
    Posts
    89
    Quote Originally Posted by po18guy View Post
    At least there was good news in the bad. Collateral damage can be the cost of living.
    and that we can live with. Hope all is good in your world. ~ Tom
    Son Jacob - 21 years old
    Diagnosed Acute T-Cell ALL July 15th 2012
    Induction Phase from 7/17/12 to 8/15 ( Day 29) Hit Remission couple days prior
    He's on a "Clinic Trial" and qualified for Nelarabine in his Consolidation Phase/Maintenance Phase
    Started Consolidation 8/19/12 - Ended on 11/7/12
    Started Interim Maintenance on 11-28-12 - Ended on 1/23/13
    Started Delayed Intensification on 1/23/13
    Started Maintenance Arm B on 4/10/13 ( It will last 180 days
    Last Round of Nelarabine on 10/25 /13 - Port Removed on 10/30/13
    Started Maintenance Arm B ( No Nelarabine) on 12/16/13
    Continued maintenance ( 90 day lumbar with IT Chemo - 30 Day Vincristine push)
    Will have last Lumbar with Chemo in September 2015
    Off treatment in December of 2015

    Post Treatment issues:
    2016 - diagnosed with Necrosis of both knees ( in femur)

  9. #19
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    9,743
    Jacob will become used to the "noise" of various aches, pains and other minor malfunctions. This is not aloofness, but merely being aware that it only gets worse with time!

 

Similar Threads

  1. Do you think this is stomach cancer or a stomach ulcer in your opinion ?
    By Bansaw in forum Worried About Possible Cancer
    Replies: 4
    Last Post: 09-04-2013, 02:38 PM
  2. Stomach pains
    By RodHunter in forum Prostate Cancer Forum
    Replies: 1
    Last Post: 05-04-2013, 04:47 AM
  3. Stomach Pains and passing food?
    By agnady08 in forum Pancreatic Cancer Forum
    Replies: 1
    Last Post: 05-20-2009, 03:22 AM
  4. Chest pains and dark phlegm
    By Trimix in forum Lung Cancer Forum
    Replies: 3
    Last Post: 03-27-2006, 11:24 AM
  5. New User - Taxol and face pains?
    By Denise in forum Breast Cancer Forum
    Replies: 5
    Last Post: 04-02-2005, 10:55 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
  •