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Thread: Metastatic Adenocarcinoma - CUP.

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  1. #1
    Regular User Chaase's Avatar
    Join Date
    Dec 2016

    Metastatic Adenocarcinoma - CUP.

    Hi all,

    Unfortunately after a long 6 months of being poked, prodded, told that what I am feeling and my gut instinct is wrong, I finally have an informal Dx.
    Informal because it is from the pathology report given to my by my doctor with a confirmation appointment to come with my surgeon on Tuesday.

    My surgeon has already let me know that there will be more surgery and more scans to see if he can find the Primary.

    I am strangely at peace with knowing what it finally is however not knowing if this is the beginning of the end or not, is a little daunting. I have 2 daughters under 10 and have no family locally. So its just me hubby & the kids.

    The story so far:

    2013 Removal of L Breast Hamartoma - 52x65x30 - Benign
    2014 Dx Fibromyalgia
    May - Began feeling unwell - Dizziness and Nausea
    June - Loss of balance, High BP, Persistent Migraines - BT reveals WCC outside on normal parameters (Doubled)
    July - MRI & CT of Brain - NED, Referral to Neurologist
    September - BT - POSITIVE PNMA2 (Ma2/Ta) IgG
    October - PET Scan & Ultrasound - suspect ovary - Referral to Gynecology Oncologist & Colorectal Surgeon.
    November - Colonoscopy - NED
    Left Oophhorectomy - NED, Peritoneal washing - POSITIVE Metastatic Adenocarcinoma. Lymphocytes, Neutrophils and macrophages
    also visible, further follow up with GI Surgeon

    Many symptoms that I have had for the past few years have been pushed under the rug due to the Dx of fibromyalgia. The medications I am also on for it have masked some of the symptoms until they became so great, they couldn't be hidden any more.

    Symptoms include:

    hair loss
    lack of sleep
    Weight gain (8kg in 6m)

    headaches/migraine increase in severity & occurrence
    vision disturbances
    wonky eyesight
    hearing loss
    ringing ears
    metallic taste
    sinus blockages

    neck stiffness
    neck throbbing

    Upper Body:
    chest wall pain
    shoulder aches
    mild palpitations

    pins & needles

    loss of appetite
    lower back pain
    tingling muscles
    abdominal cramping
    stitch feelings

    Lower body/Legs:
    hip pain
    body aches
    leg throbbing
    pins & needles

    Does anyone have prior experience with metastatic adenocarcinoma - CUP?


  2. #2
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Hello. I am so sorry you are going through this. We are not Drs here and most of us only really know about our own cancers but the emotions we have are the same. I hope so much there will soon be more light shed on this for you. I hope also that someone will be along who can be more help than I am.

    My best wishes to you and hang in there.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  3. #3
    Newbie Top User BobInBonita's Avatar
    Join Date
    Mar 2014

    I'm really glad you found us, but sorry you have to be here. I wholeheartedly agree with Didee said above.

    CUP (Cancer of Unknown Primary) can be difficult to treat unless the primary can be found.

    You don't say where you are being treated. If at all possible, try to get a consult/second opinion from a major cancer center or University medical school. Larger centers tend to have the most experience with more unusual cancers, they tend to have the most up to date equipment (possibly more sensitivity), and also access to more research trials.

    My best wishes that you can get to the bottom of this so you can start your recovery soon.

    7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
    8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
    12/12 Whipple - R0 margins, 2/29 nodes pos.
    1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
    2/13 - 8/13 Gemzar for 6 months
    Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
    3/15 - spot larger - probable met - surgery planned
    4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
    5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
    10/15 - 8/16 maintenance 5-fu every other week
    8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
    9/16 - lung biopsy confirms pan can met,
    10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
    4/17 - PET/CT showed significant disease progression, multiple lung mets, pancreatic bed tumor has grown
    5/17 - Started hospice care - striving for acceptance

    Stay busy and live life to the best of your ability.

  4. #4
    Administrator Top User ChemoMan's Avatar
    Join Date
    Jun 2008
    Blog Entries

    I found a link for you if you want more information


    You may have already read this so apologies if this is so.

    There are some scary stats there so another link is in order so that you do not freak out...please do not read the first article without reading this after. The article is about Stephen Gould a famous scientist who survived for a few decades with mesothelioma...it is an uplifting read for people with a daunting diagnosis...the link is:


    Good luck
    Age 60
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  5. #5
    Regular User Chaase's Avatar
    Join Date
    Dec 2016
    Thank you

    I am in Central Coast, Australia. Not too far from Sydney so I am quite lucky that I can choose my specialist from either location. So far, all of my specialists have been the top of their fields here where I live.

    Tomorrow is the day that I meet with the next surgeon to determine the next step.

    Keeping positive is hard but thankfully I work with the most amazing woman how has beaten Ovarian cancer past her 5year mark. So she has helped keep my mind at ease.



  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    CUP is a difficult one, I will admit. There are cases in which the primary is never identified, and so it must be dealt with according to what pathology finds. However, there is increasing crossover in cancer drugs, as the "pathways" of cancer cell replication are known. Thus, for example, a kidney cancer drug may also be very efficacious against some other, unrelated type, since both use similar methods of cloning themselves. Most doctors love challenges, so I think that you will get the help that you need. Obviously, we are pulling for you here. Do let us know how you go.
    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.
    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).
    To date: 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.

  7. #7
    Regular User Chaase's Avatar
    Join Date
    Dec 2016
    No news is good news huh? that is until you just cant take it anymore. it has been 6m and still cant decide if I do or don't. I am getting an endoscopic ultrasound to biopsy the stomach, pancreas etc.

    I am also off to see my regular GP tomorrow at his request, fingers crossed he can also help things along test wise


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