A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
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Thread: New here

  1. #1
    Newbie New User
    Join Date
    Mar 2016

    New here

    Found this site in the wee hours this morning.. I have been researching and researching like crazy ever since I came home from the hospital on Jan 27th 2016.. Initially went in for colon cancer surgery.. stage 3.. when the pathology report came back in we had an additional surprise, Signet Ring Cell Carcinoma of the appendix..

    Still waiting on having chemo.. problems there.. oncologist and surgeon.. long story short.. when I go back next week to another checkup with surgeon I maybe asking to obtain a second opionin.. Oncologist yesterday informed that he knows of two cases of the same kind of cancer of the appendix and they were receiving treatment and died..

    I am a bit overwhelmed at times.. so I am reading and researching everything I can . I am one that wants to be informed..
    Once I get started on chemo I will be on FolFox 6 every two weeks for 6 months..
    Looking forward to learning from all of you.

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Love your username! Sorry to welcome you here under these circumstances. Have they done any testing to ensure that it is localized?
    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
    Top User mojo's Avatar
    Join Date
    Apr 2010
    Welcome wheezeerider. Sorry about your cancer. Be careful of Google because many things are not up to date, it can frighten you more than need to be, I think getting a second opinion is always a good idea. I'm not up on signet ring ca, my husband had regular old colon cancer. Others will chime in with help soon. Please keep posting. Sharon

  4. #4
    Sorry you are here but it is a great place for support and first hand info, been there, done that! Jot down all your questions to ask and if possible have another set of ears at the appointment to help digest everything you will hear. Best of luck to you on this journey!
    Hubby diagnosed in 2005 with Stage IV, January...Journey on this road has had some major obstacles ..... God continues to help us endure each one.... enjoying life and doing as much as possible!

    My Carolina Cowboy gained his angel wings in August, 2017, 11 1/2 years with Stage IV. It was an amazing journey on this bumpy road. His attitude in fighting this beast was like no other. He did not want anyone's sympathy or pity so much that a lot of our friends did not even know he was in this battle. Many, many thanks to our super oncologist, surgeons, radiologists, staff, and etc. Most thankful to our God above for letting my soulmate be with me all this time! Amazingly, most of the time in this fight was great! We enjoyed trail riding every chance we had to go and so many other things that life offered to us. Even took a few rides with a 5FU pack. My cowboy was a tough one, John Wayne had nothing on him!

    Don't give up! Keep the fighting attitude!! Blessings to all!! May a cure be found!!

  5. #5
    Welcome wheezeerider, sorry about your situation, but you came to a good forum. Lots of good folks here.

    Keep us updated!

    Best wishes,
    Feb. 3, 2015 - Diagnosed with Colon Cancer with Liver mets
    Apr 21, 2015 - BardPowerPort catheter
    Apr 22 - 1st chemo of FOLFOX + Avastin
    May 8 - 2nd treatment (However, the port had a staph infection and had to be removed mid-May.)
    Jun 23 - now with a new port, chemo resumed up through July 7th when I had an allergic reaction.
    July 28 - up through Sep. 8th - chemo is now FOLFIRI +Avastin
    Sep 22 - CT scan (chemo has been stopped due to too much weight loss, dehydration, diarrhea & nausea)
    Oct 14 - Consult with Sir-Spheres (Y-90, SIRT) Specialist in PA
    Oct 20 - Started taking Xeloda chemo pills (generic Capecitabine) 3000 mg daily
    Nov 24 - Sir-Spheres microsphere radiation procedure to the liver tumor
    Feb 24, 2016 - MRI shows 7.7 original liver tumor shrunk to 4.7 cm However, there are several new 1 cm tumors
    Mar 24 - Lung nodule biopsy confirms metastases April 16 - KRAS gene mutation Positive - Apr 22 - CT scan shows new bone mets in hip/pelvis


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