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Thread: I am new here and afraid. thank you for being here

  1. #1
    Newbie New User
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    I am new here and afraid. thank you for being here

    Hi friends,

    I am 69 and new in this forum. I live in Spain and below you have my history.

    Result of pathological anatomy: bilateral ovarian serosal adenocarcinoma, Grade 2, present in both the primary lesion and the resected implants. No affected ganglion, cytology of ascitic fluid: negative. Stage IIIB

    I am here to know you thougths...I have been reading a lot in Internet, may too much and I am would like to know more about your cases and about clinical trials. do you believe in them? How can I find them?

    thank you

    x

  2. #2
    Moderator Top User jorola's Avatar
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    May 2014
    Location
    Alberta
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    Welcome Palomaie,

    I am sorry I have been away and just read your post now. First thing I must say is stop googling! Please for your own sanity. Google does not have a med degree, does not know your history, never examine you and cannot read and interpret results from tests like your doctor can. So google is just a search engine pretending to be a doctor and he sucks - big time!

    As for the clinical trials, each country and their healthcare system is different so what I may have access too (I live in Canada) compared to others like the US, or Europe can be very different. I strongly encourage you to write down all your questions and then book time (let the booker know you may need more time) to sit with your doctor and ask away. If possible - take someone with you. 2 sets of ears are better than one and the other person can also take notes while you speak to your doctor. Your doctor should be aware of all the possible clinical trials or point you in the right direction. Also many Cancer support organizations (I am sure your country has several) can be a source of good info for you. Many people on here have participated in various clinical trials. Some have done well, others not but keep in mind there are so many personal/individual factors involved that the only one who can really say if it is right fr you and your doctor and you.

    I hope you find some answers. Let us know what you find out. Your story may help others on here or those who come looking on here.

    All the best,
    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto

  3. #3
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
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    Pacific NW, USA
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    8,256
    Sorry to hear of your diagnosis. Are you being treated at MD Anderson in Madrid? If not, that is definitely an excellent resource, as MD Anderson in Houston, Texas is generally rated #1. As to clinical trials, I am here because of a clinical trial. They offer you the possibility of receiving drugs years ahead the general public. You may drop out of the trial at any time, and for any reason. If the trial drug is not effective, you will be switched to standard therapy. Additionally, the only way that cancer therapy is advanced is via clinical trials. Just have a look at the adverse effects or events from data gathered so far and discuss this with your oncologist.
    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.
    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. Active surveillance is the course of choice.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 3 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. Two lymphoid malignancies plus a myeloid malignancy lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

 

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