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Thread: Cancer treatment Centers of America

  1. #1
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    Cancer treatment Centers of America

    I have recently found out I have cancer. The biopsy was done during a colonoscopy that showed "poorly differentiated cells". I had a CT on Monday that shows the cancer is coming from my ovary or uterus. Apparently it also involves my colon, ureter, and abdominal lining. I am trying to decide on a doctor and I was wondering if any of you have experience with Cancer Treatment Centers. Any advice is welcome. Thanks!

  2. #2
    Moderator Top User jorola's Avatar
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    Hi Patty

    I am sorry I do not have experience with Cancer Treatment Centers but wanted to let you know I was thinking of you.

    I am hoping my American friends (I am from Canada) can chime in here with more of an answer for you.

    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

  3. #3
    Super Moderator Top User po18guy's Avatar
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    CTCA is a private operation, so it greatly favors those with excellent private insurance. Lacking very good-to-excellent insurance, they might just send you elsewhere.

    Personally, I would consider nowhere except a National Cancer Institute designated cancer center. The reason being that they are cutting edge, conduct clinical trials and employ the best and brightest.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  4. #4
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    Thanks jorola!

    po18guy, thanks for the link. I'll check it out. I actually do have great insurance through my husbands work. Is the insurance issue the only problem you've seen with them?

  5. #5
    Super Moderator Top User po18guy's Avatar
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    Quote Originally Posted by Patty802 View Post
    Thanks jorola!

    po18guy, thanks for the link. I'll check it out. I actually do have great insurance through my husbands work. Is the insurance issue the only problem you've seen with them?
    I do not think that they conduct clinical trials, thus the treatment you receive might not be cutting edge. And, the cutting edge changes week by week in the research field. They are certainly worth a consult, but if your case is the slightest bit complicated, I would veer toward the NCI designated centers.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  6. #6
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    I followed the link and there is one in my area. The problem is, I haven't heard good things about them. The person who raved about CTCA went to that place first and wasn't happy at all.

    I'm seeing a gyn/onc today for a first opinion. I don't think I've ever dreaded anything more.

  7. #7
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
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    7,000
    When your life is potentially at stake, it is worth traveling to one of the NCI centers. Questions to ponder: Was your friend's diagnosis the same as yours? Was the grade or stage ther same? Areas affected the same? Was your friend's complaint doctor-specific of facility-specific? If doctor specific, you may request a different doctor, and do a bit of research on that doctor first, such as at healthgrades.com.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, 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. 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) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Haploidentical Allogeneic 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 Blood nose dive. Fever. Hospitalized two weeks.
    08/04/15 Engraftment official - released from hospital.
    08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    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.
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.

    I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.

    "What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
    - Hebrews 11:1

  8. #8
    Moderator Top User BobInBonita's Avatar
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    Mar 2014
    Location
    Bonita Springs, FL USA
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    1,553
    I do not have direct experience with CTCA, so what I am about to say is an opinion, not necessarily fact. It is an opinion based on several years of reading of others experiences, and on my what I found when I was originally considering them in mid 2012.

    I 100% agree with what Po has said. NCI designated Comprehensive Cancer Centers are on the top as far as technical excellence goes. Not everyone ranks technical excellence as the most important factor. If you want massage therapy along with your chemo, if you want limo service from the airport, if you want a "prettier" environment, if you want dietary therapy that goes beyond good nutritional suggestions, then you might consider CTCA. If you want artificially inflated numbers because of the way they select patients, instead of world class actual results, then you might consider CTCA.

    I would go with the best therapy that has proven and scientifically valid results. I found that at an NCI site and am here 4+ years after I was originally given 5-7 months.

    Here are a couple of links you might find interesting:
    Reuters - CTCA 2013
    Naturopaths review CTCA
    http://www.highya.com/cancer-treatme...merica-reviews
    https://www.sciencebasedmedicine.org...e-cancer-care/
    http://scienceblogs.com/insolence/20...cherry-picked/

    There are many more review articles about CTCA. Please don't just take the "case studies" that they present as how everything works.

    I'm sure your friend is well meaning, but please keep your eyes wide open if you even get a second opinion from CTCA. This does not mean that all CTCA sites and practices are dubious. There are probably good Drs at every cancer center. The problem is that as a patient walking in for the first time, we usually don't have even the same amount of knowledge that we have when we walk in to buy a car. I have been sucked in by several slick car salesmen over the years. Beware of the potential pitfalls and go wherever you feel is best for you.

    Please tell us about your experiences no matter where you choose to go.

    Best wishes to you.

    Bob
    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

    Still open to immuno-oncology trials (vaccines or checkpoint inhibitors) if I find one I'm eligible for.

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

  9. #9
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    The NCI center is only 15 minutes further than CTCA from my house. I am close by and have good insurance that I believe would be accepted at either place. I may get an opinion from both of them.

    The Gyn/Onc I saw today is the referral from my regular Gyn. She is not NCI or CTCA. I wasn't really impressed. She wants me to see Urologist and Gastroenterologist surgeons because the cancer involves the ureter, bladder and colon. She is ready to schedule me for surgery and she hasn't even done a PET scan or drawn a single lab. She is closest to me, but I think I've ruled her out.

    My appointment with CTCA is next Thursday. I'm still planning to check them out. I admit I am intrigued by their holistic mind/body approach. I truly believe the stress I've been under for the last 4 years have played a big part in this diagnosis. Most of the complaints seem to be financial practices. I am more concerned with getting this cancer out of me and staying out of me with the least amount of stress to my body as possible. I will definitely keep my eyes wide open and if I start feeling like I'm being scammed I will walk away.

    I will try to make an appointment with the NCI place on Monday, but the only person I know who used them, hated them. Of course, the ovarian cancer dr could be amazing.

    Thank you all for your responses! I had heard nothing but glowing reviews about CTCA, but none specifically about ovarian cancer. Now I think I'll be able to see them with a sharper eye.

  10. #10
    Moderator Top User jorola's Avatar
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    Hi Patty,

    Thanks to my fellow mods for helping here.

    I think checking out both providers is an excellent idea. That way you can make an informed choice.

    Regardless of what direction you chose to go. I wish you the all best and please keep us posted. We will be here to listen and provide any assistance we can as you travel on this road to recovery.

    Peace and comfort.

    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

 

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