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Thread: Worried I don't have long to Live......

  1. #1

    Left Side Back Pain.... Very Scared

    This all started one evening (6 months ago)when I felt like someone stuck a finger into left side of my back below the ribs.....then a few seconds later it felt like a second finger was stuck into my back just about an inch below the first one.....later that night I had clear fluid coming out my backside.....the next morning the constant left side back pain started.....

    Sometimes my back feels a liitle better after walking for at least 30 lminutes....takes the edge off....

    Some days the pain is not as bad .....other days worse....but the pain is always there to some extent or the other.....

    I sleep ok most nights....seems like the pain gets worse not long after waking in the morning.....

    I made the mistake of Googling my symptoms and now I fear the worst.....the last 6 months have been torment for me....
    I changed my diet to a low fat diet(lost a lot of weight) but made no difference with pain....

    I went to GP 5 months ago and explained my symptoms......he said pancreas does not cause back pain.....he felt around my abdomen and said it was not tender.....I told him my research said otherwise......he stopped and looked at me and said that he was a doctor of 25 years and knew what he was talking about.......
    So he gave me several xrays and a regular cbc blood work that came back normal.....with normal bilirubine and liver numbers.....

    TWO years ago I went to the ER (when I thought I had bladder cancer because of blood clots in urine) I had slightly elevated liver ALT numbers and a CT scan that was normal.....

    I have several weird symptoms on top of all this....such as.....

    **lost a lot of weight (I changed my diet drastically to low fat, low sugar and eating small portions.....also cut out drinking soda pop)
    **Dry flaky skin over my entire body
    **my voice is effected some days
    **head hair falling out
    **pale stools most of the time sometimes brown but normal size and shape
    **burning right thigh muscle
    **some days both legs hurt

    I know you guys cannot diagnosis me but you guys have a wealth of knowledge....probably more than most Dr's....
    Please help me......I don't know if I can go on.....
    Last edited by BillysPain; 05-11-2019 at 02:43 PM.

  2. #2
    Super Moderator Top User Baz10's Avatar
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    Billy,
    What you describe is what I have lived with for several years, yet I stress not with anxiety.
    Most of the time it just lets me know it is there, unfortunately more frequently these days it erupts into a full blown fight between the pain and the pain meds.
    If and I stress IF I googled the symptoms I’m darn sure my search would come up with several different types of cancer.

    This is why my friend I don’t Google as I don’t wish to be mislead into thinking I have a disease I don’t have.
    Life is tough enough without adding anxiety into the equation.

    If as it appears you are suffering with anxiety get back to your doctor and talk through your concerns as well as the symptoms.

    Fact, if you think you have something the brain through anxiety will magnify those symptoms.
    Good luck and get back to your doc.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Sorry to hear of your situation. Know this: 1 in 5 today suffer from anxiety. That is 64 million in the US alone. Anxiety can produce (without physical disease!) over 100 of the 150 symptoms our bodies can experience. Have a read here. Scroll down the page and see how bad it can get. Anxiety steals your peace.

    You deserve to live in 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.

  4. #4
    Thanks for taking the time to respond I deeply appreciate it.....it means a lot to me.......

    I have been lurking around the worried forum section for 3 months before posting.....hoping to see other people with my symptoms that did not have the worst case scenario......

    My age is 47 (which worries me)
    I'm married to a beautiful wife and 4 kids.....

    I don't drink and quite smoking 21 years ago in 1998
    My diet was bad as I ate what I wanted.....Lots of sugar, sweetners etc.

    I cannot bring myself to look at the actual Pancreas C. section on these boards...as I fear my symptoms will line up with most of theirs.....

    I just don't know what else this can be but the worst....with all these symptoms combined together.....especially the left side back pain just below the ribs

    I have a strong fear with the symptoms I have had for 6 months that going back to the doctor will be pointless as they (Drs) won't be able to do anything for me.....and confirm my worst fear...
    .....
    I did not worry then develop symptoms but developed symptoms and then worried as the pain is always there to some extent with more symptoms appearing as time goes by.....

    I know you guys aren't doctors....i just need your opinions please....

    I'm really surprised that I'm still here(alive) after 6 months....

    God bless all of you and thanks again for your time....

  5. #5
    Administrator Top User lisa1962's Avatar
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    Sorry you are so worried but given that fact and you jumping to the worst case scenerio, why not go back to your physician?

    If your not confident that your fears are being addressed with your doctor, then it's simple, find another. However, with that said, at some point you have to put faith in the medical professional. If you can not, then clearly, there is more going on than you wish to consider, emotionally.

    Just about any random symptom can point to cancer if you Google. Google is not a doctor, not medically trained and convinces even the most rational person they are seriously ill.

    Make an appointment as there little else we can offer. You also may want to consider something muscular as that is painful and sometimes difficult to identify. Your other symptoms, stress and fear can make one believe there is physical pain.

    Good luck to you and make that appointment. Posting on a cancer support site is certainly amplifying your fear.

    Lisa

  6. #6
    Quote Originally Posted by BillysPain View Post
    I'm really surprised that I'm still here(alive) after 6 months.......

    Thanks again for your time....

    The fact that you've been so worried for so long is a point of positivity for you. If you had pancreatic cancer that was causing your symptoms, by this point in time, it is likely that it would have killed you already after years of just worrying and no treatment.

    The kind of fear that you have is very debilitating, by all means see a doctor that you trust so that you can enjoy a little less insecurity and anxiety over this.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  7. #7
    Quote Originally Posted by lisa1962 View Post
    Just about any random symptom can point to cancer if you Google. Google is not a doctor, not medically trained and convinces even the most rational person they are seriously ill.

    Before Google, we had the Merck Manual. If looked up symptoms, they always listed the most ominous possibilities first. Its really not good for some people's mental health, if they look up "Headache" and see brain tumors and brain abscesses as the #1 and #2 causes. Google just makes it a lot easier to worry people.
    Nov 2013 PSA 4.2 Biopsy Jan 2014- 1 core positive, 20% Gleason 6, doctor highly reco'ed robotic RP - 2nd opinion at UPMC April 2014, put on active surveillance. 2nd biopsy Feb 2015, results negative. PSA test Feb 2016, 3.5. 3rd Biopsy Feb 2016. 3 positive cores less than 5%, Gleason 6. Octotype DX done April 2016, GPS Score of 24--rated "Low risk". PSA test 8/2016, 3.2. PSA test 1/2018 2.2 (after 7 months of proscar) PSA test 7/2018 2.3, PSA test 7/2019 2.0


    DOB 1956, in Pittsburgh, USA

  8. #8
    Southsider ive only had back pain and worrying for 6 months......not years......
    Do you still think it's a positive for me ?
    Do you think I would still be around ?

    Lisa1962 the pain feels internal......Tylenol and all otc does not touch the pain....

    Thanks for taking your time to reply....

    Feel free to ask me any questions.....

  9. #9
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Posts
    5,420
    Billy,
    Butting in again
    One question
    Does the pain appear before, during or after exercise. ie stretching, walking etc
    reason for question
    is it mechanically related eg: skeletal or tissue muscle.
    only you know,
    so ?.
    Pancreatic cancer is difficult to diagnose, difficult to treat and progresses quickly, therefore I’d suggest after 6 months you would be in a far worse state than you seem to be.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  10. #10
    Baz10 thanks for the reply you are never "butting in"......I appreciate eveyone taking time with me....

    As far as walking usually I will have pain before....

    Pain lessens when walking.....

    Pain comes back gradually after walking.....

    I dId walk about 30 to 40 miles in 2 days about 15 days ago at a large car swap meet....but my legs have been paying for it since.....

 

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