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Thread: Pancreatic Worry.

  1. #1
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    Pancreatic Worry.

    It all started on December 8th 2018. I woke up with this weird right leg pain which felt similar to meniscus tear but I was not involved in any sport activities so was awkward and that still hurts today but not as bad as December 8th. After this 2 weeks later my stomach would make weird rumbling sounds all day and I developed a lipoma on my back which was painful when driving. I noticed my urine was dark especially in mornings and my stools would be very smelly and sometimes diarrah also constipated. This is a long story so Iím sorry if I am confusing anyone. After two weeks of hearing my stomach just make noises which I never had this knowing my own body..I started to wake up sweaty for 1 week with pain in middle top that would hurt also my back. First I went to see a dermatologist he ordered a ultrasound which came back as fatty lipoma. I know my body so well and I been sick for 5 months losing weight to the point I accept the pancreatic cancer but at least give me a diagnose to know what Iím fighting. So for the past 3 months my main symptoms are back lower pain daily..nausea and this dull stomach pain like annoying. Very smelly gas like a rotten tomato excuse my language just being honest. By the way Iím 35 year old. So I kept going to ER for 3-4 months they would not give me a ct scan and keep telling me I have gastritis and be sent home. Blood tests show everything normal but elevated WBC 13 or so. Finally got approved for health care being that I did not have insurance at the time and had a colonoscopy and upper endoscopy done. Normal Results. Had an MRI done in April 3íd they only found some gall stones which Iím sure everyone has them or for most part. They found a hepatic lesion but on the report it is stated it looks benign and mostly a fatty lipoma hmm..and yeah a kidney cyst. Look first 3-4 months I was panicking and frustrated with knowing something is wrong with my health but not finding a diagnose now Iím to the point where Iím waiting to turn yellow so they can find whatever is happening. I donít understand what else can cause my symptoms I do not want pancreatic cancer but itís frustrating how doctors do not take the patient serious. I do not love going to the ER honestly who loves going to hospitals? We go because we are in pain. They think we are some pain killer addicts yet I do not take any meds beside Alleve for my daily back pain that it gets worse each day with nasty looking stools and no answers. So in short my symptoms were 1 leg pain 2 upper stomach pain, numbing sensation in hands and legs, elevated WBC, dark urine, fatty lipoma on my back, nausea, smelly gas, changed bowls, weight loss 20 lbs back in December when all this started I was swaying at night and not eating I felt food was disgusting. My appetite is okay now but my stomach feels like swollen and my back hurts.. I am ok when I sleep but staying in one place or driving my car I am annoyed by back pain. I know I have pancreatic cancer symptoms but I refuse to believe it and I just wanted a chance to catch it a bit early but I will most likely join the others with stage 4. I do not fear death we all will die one day I am sad for my parents to actually bury me and me being able to bury them. If anyone knows any doctors in Ohio and is willing to help me get diagnosed please do help. I do have Medicaid being that I was born in Europe we lack knowledge of how important health insurance is in USA. I most likely will get diagnosed only when I develope jaundice. Take care everyone and no I am not crazy or google hypochondriac I have real symptoms but no diagnose yet.

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    Replying to a thread like this is awkward because of the mental state of the OP. I in no way consider you crazy or a ďGoogle hypochondriacĒ, and I believe your symptoms are real. Please take no offense to this frank, heartfelt reply as I am speaking from experience and a genuine desire to have you get past this or get a diagnosis.

    I recognize a lot of similarities between your assessment or your health, and my own from just a short time ago; Iím still battling depression and anxiety. Your unfounded resolute self-diagnosis is illogical. The wording youíre using is classic health anxiety. You say you have ďpancreatic cancer symptomsĒ. You simply have symptoms. Iím not saying the symptoms arenít real, as they most certainly are. Whatís wrong here is that youíre arriving at a diagnosis with no basis other than your own google research. I realize youíre not a Google hypochondriac, but ask yourself this: would I have arrived at this diagnosis without Google? The answer is almost assuredly ďnoĒ. But because of it you have, without a medical degree and without a single test result to suggest it, arrived at a self-diagnosis and are so convinced youíre staging yourself at stage 4 cancer, sounding your death knell and speaking of your own burial. This is far from a healthy outlook and mindset.

    Please understand Iím not saying thereís no way you donít have cancer. No one can say that. Iím saying the odds are you donít, yet youíve decided you do. Take it for what itís worth, coming from someone who sounded just like you a little while ago. Go to your doctor, tell them your symptoms, and let them do their job. Stay away from Dr Google, heís a subversive fiend who steals your peace of mind while convincing you youíre smart enough to have figured this out.

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    Chris, thanks for taking the time to reply Iím not saying I have 100% pancreatic Iím basically saying I know my own body better than anyone l like yourself you just know when something is wrong. Iím praying itís not pancreatic cancer and yes google can be bad for your health but it also gives you somewhat of a knowledge. Honestly I donít even know what pancreatic cancer is until I started having issues in bathroom still do but have no diagnose atm. Iím curious to what have you been diagnosed with? I did read a bit about your blood clots in past. Excuse my grammar English is second language to me but I do love USA 🇺🇸❤️ I do not fear death my friend I just feel very unlucky if I have it.

  4. #4
    Administrator Top User lisa1962's Avatar
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    Thealbanian

    I can not say it more direct and logically than the reply to you from Big Chris. Yes, you know your own body but why jump to the worst case scenerio?

    We get a lot of Worried posters here believing they have pancreatic cancer
    Not one, as far as i can think of, was actually diagnosed with cancer
    Further, you are far below the median age for such type cancer. Not that it can not happen, but would be highly unusual.

    In order to curtail further continuation of this discussion, go back to your doctor, not the ER, and discuss your concerns both physically and mentally. There is little else we can offer.

    If you are ever diagnosed with cancer, we will be here for you but for now, take the advice given and be proactive in a logical way with dealing with your concern.

    Lisa

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    Quote Originally Posted by Thealbanian View Post
    Chris, thanks for taking the time to reply Iím not saying I have 100% pancreatic Iím basically saying I know my own body better than anyone l like yourself you just know when something is wrong. Iím praying itís not pancreatic cancer and yes google can be bad for your health but it also gives you somewhat of a knowledge. Honestly I donít even know what pancreatic cancer is until I started having issues in bathroom still do but have no diagnose atm. Iím curious to what have you been diagnosed with? I did read a bit about your blood clots in past. Excuse my grammar English is second language to me but I do love USA 🇺🇸❤️ I do not fear death my friend I just feel very unlucky if I have it.
    Your English is fine, better than a lot of folks born here, hehe.

    You asked what my diagnosis is. I have a blood clotting disorder, determined by genetic testing. The rest of my gastric symptoms were ultimately explained by the side effects of the blood thinner injections, and anxiety. You can have anxiety and not realize it. You can have symptoms exacerbated by anxiety. You can symptoms caused by anxiety. You can have no fear of death but fear cancer. You can know your own body but your mind play tricks on you.

    Iíll say one more time you would not be thinking pancreatic cancer had it not been for Google. And what have you gained from it? Do this (as I did): go back through this Worried sub forum and read every post from someone who feared pancreatic cancer (there are MANY), and see how many of them ended up with it.

    I wish you well, and Iím praying for an healthy body and spirit for you.

  6. #6
    Super Moderator Top User ddessert's Avatar
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    I am no doctor but all of your pancreatic-like symptoms can be explained by gallstones which you do have.

    I would concentrate your doctors on the gallstones (perhaps they are getting larger?). In the very unlikely chance that there was pancreatic cancer, it would be uncovered at the same time.
    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
    @pancanology

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    The problem is the referal time it takes to see someone for gallstone removal.. 😔 any ideas? God bless you all and my understanding is that you are not doctors but I just feel better discussing my situation with you all and not my real life friends. Thank you

  8. #8
    Super Moderator Top User ddessert's Avatar
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    Quote Originally Posted by Thealbanian View Post
    The problem is the referal time it takes to see someone for gallstone removal.. �� any ideas?
    This sounds like a person that will not see a doctor unless they are going to diagnose them with pancreatic cancer.

    A referral for a gallstone will go over much better with a doctor than a 35-year old who insists that they have pancreatic cancer. If you fixate on the pancreatic cancer diagnosis, you will only get labeled by doctors as a hypochondriac and you will find it difficult to receive adequate medical care in the future.
    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
    @pancanology

  9. #9
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    Two things to remember. Although a lot of people with pancreatic cancer have some or all of the symptoms you describe the vast majority of people who have those symptoms have nothing serious wrong with them.

    Most doctors are used to dealing with people with health worries. It is fine to say that you are worried about pancreatic cancer, but go with an open mind about what the diagnosis will turn out to be and what tests will be done. Good luck.

  10. #10
    Super Moderator Top User po18guy's Avatar
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    I have had five out of the seven common symptoms of pancreatic cancer. Did I have cancer?

    No.

    I had symptoms. Keep in mind that our bodies can produce only about 150 different symptoms - total. Those 150 symptoms must cover over 68,000 diseases and conditions. Anxiety - the invisible disease as BigChris just said, can cause symptoms. It can actually cause over 100 of those 150 symptoms.

    Ask yourself - ask your family and loved ones if they think you are anxious. Listen to them, as they know you best. Talk to doctor about anxiety, as treatment does not always involve drugs.
    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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