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Thread: When To Get a New GI

  1. #1
    Newbie New User
    Join Date
    Oct 2019

    When To Get a New GI

    I understand that Pancreatic Cancer is in the headlines lately. I am admittedly a hypochondriac sometimes as well. However, I am wondering if anyone else has had any issues getting their GI to take them seriously?

    I have had a series of of medical issues the past 5 years. I went from being a healthy 28 year old female to suddenly having migraines, gastro issues, back pain, and Central Nervous System problems (complete with tremor, stutter, vision and motor skill problems. There was a point I was unable to walk.) Sparing you as much of the the nonrelevant information I can, I eventually found a direct link between my gastro issues being gluten related. Every scope, colonoscopy and Celiac panel came back negative. However, eliminating gluten immediately helped me to walk, talk and feed myself again and an allergy test confirmed a high wheat sensitivity and several other food additives. Flash forward and 2 years into my new diet, I am having abdominal pain worse upon eating. Again GI dismisses it because all scopes come back negative. Finally a HIDA scan ordered by my PCP confirms my gallbladder functioning at only 8%. Gallbladder gets taken out.

    Also within 3 years of my gluten free diet I lose 25lbs, but I start experiencing excruciating sciatic and pelvic pain. Suddenly I start having non-epileptic seizure like episodes. After 6 months I am suddenly unable to walk without assistance from a cane or walker, occasionally finding myself completely unable to stand at all without help. Every Neurologist sees negative brain scans. They tell me my pain and motorskill issues are manifestations of a childhood drama and hysteria. However in July 2018 it was found that I have bulging discs from L3-S1, Spina Bifida, nerve root and spinal canal stenosis, spinal instability and annular tears and hairline fractures. I am in the process of getting my spinal fusion authorized by insurance.

    Most importantly (and to the Pan Can point) during the many CT scans and MRI scans, it was discovered that I have a nonalcoholic fatty liver, a 5.3x3.3x3.0cm hemangioma in the liver, and 5mm cyst in the posterior segment right lobe. Same scan also discovered I have 2 cysts in my pancreas- 2mm IPMN and a 4mm pseudocyst. It has been less than 1 year from the discovery of these cysts. Since then, I have been through lots of physical therapy for my spine. However, my digestive issues keep worsening. Despite my gallbladder being removed I have very similar, more painful attacks upon eating. The pain is under my right breast, straight around the side to near my spine. Sometimes I find it very hard to breath due to the pain and pressure. The Nuerosurgeons working on my spinal issues advise that although I have advanced Degenerative Disc Disease for someone my age, they do not see any new structural issues in my thoraic xrays. When I consult my GI, he simply states that he thinks my pain is in my head- in my opinion this is all because the stupid Nuerologists stamped my medical files with a diagnosis suggesting mental issues, despite the fact there was in fact a diagnosed spinal canal issue. Feeling like I want to vomit after a fist full sized serving of food is not normal for me. I have my diet in check and I am not consuming any of my allergens, yet the constant dull pain in the pancreatic area worsens MUCH more after eating or laying down. Not a single PA or GI doctor in my practice will do further testing on my pancreas because the cysts are under the size of "troublesome" masses. Even my PCP tells me my pain is a muscle spasm. I can't see a muscle spasm lasting over 1 year, especially with the number of muscle relaxers, nerve blockers and anti seizure medicines I have been on/off in that year. I can't seem to get any doctors to take my concerns seriously. With my spinal fusion upcoming I am concerned about the possibility of my pancreas being more of an issue. I know I will not be able to do CT or MRI scans as often with my new metal implants.

    Any advice is greatly appreciated. Should I abandon the GI office that ignored my Celiac issues and go directly to the Hematologist that gave me some of my genetic blood tests? I don't mean to jump the gun and don't want to be considered "hysterical" by going to the wrong specialist. BUT thus far, I've been the only one who has been right about my health. I was able to diagnose my gluten intolerance and demanded spinal MRI's due to my suspicions. I look back over the last 4 years and I know it all looks crazy on paper, but I've been through the wringer and I have gotten to know my body very well.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Very sorry to hear this. Without multiplicity of health issues, where to begin? Such wide-ranging and generalized symptoms do not strike me as specific to any cancer. A malignancy which produced such profound and life-changing symptoms, over such a considerable period of time, would have you extremely ill, if you were even alive. Rather, I think that your hypochondria has much to do with this. And, for that reason, many physicians will not probe further as they believe that they are testing a person without cancer.

    Are you in treatment for anxiety or hypochondria? It is 100% treatable, and often without drugs. Scroll down this page and notice the over 100 symptoms that anxiety can produce. With all of your other health issues, you deserve to live in some degree of peace.
    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
    Newbie New User
    Join Date
    Oct 2019
    I do not have anxiety. As I mentioned I have been on and off several seizure meds, which are typically antianxiety meds. I've been on Ativan, Baclofen, Topamax, Amitriptyline, Lorazepam, Keppra and Gabapentin. I have never had any issues with anxiety. My concern is not that I have pancreatic cancer right now. My concern is that I am talking to the wrong specialists. I was told I have pre-cancerous cysts on my pancreas and liver. Now when I am having chronic pancreatitis symptoms and intermittent insulin issues, my current GI doctors will not assist me with further exploration and/or testing to see WHY. I am a holistic healing nut and I hate taking drugs, so I have weaned myself off of most of my medications. Due to my body's inability to process alcohol well, I can't imagine how it metabolizes Big Pharm meds. In fact, some of my doctors are shocked that I am as calm, functional and good spirited as I am despite what I am going through. My Nuerosurgeons, my allergist and some ER doctors have all suggested I study medicine because my off the beaten path suggestions have led them to some pretty serious health issues that explained the symptoms I was told were 'just my hypochondria" 4 years ago.

    I am a rational person. I am not blaming my other conditions on being cancerous. I have spinal issues, it has nothing to do with cancer. My main reason for posting is because I am just not sure if I want to head out to a hematologist for this particular issue. Typically one doesn't see that type of specialist for simple pancreatitis. However, I feel like being told I need annual MRI's and tests for monitoring my cysts/growths and then "shooing" me away when I complain of the worsening pain is a bit cruel and uncaring. Wondering if I just find a new GI doctor or take it up with the hematologist who has done some of my other tests/labs.

  4. #4
    Super Moderator Top User ddessert's Avatar
    Join Date
    Oct 2013
    Blog Entries
    You could try germline genetic testing. If you want to order it yourself, there are direct to consumer options such as color.com for about $250 out of pocket (no insurance). It is not a full genetic testing for any kind of mutations, but includes checks of most of the known cancer related genes.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919


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