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Thread: Husband's First Day of Chemo

  1. #1
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    Husband's First Day of Chemo

    Hi,
    I am new to this forum so please forgive me until I get acclimated.

    My Husband and I will likely be receiving his test results, diagnosis, treatment plans and prognosis on Wednesday when we return to the Center. We are taking it one minute at a time. He had an mri done and we took that report to the specialist. We will celebrate our 30th Anniversary in 9 days and we celebrate our love each and every day.

    We've been through, "Richer and Poorer, Better and Worst....in Sickness and in Health.

    This is so foreign as my Husband is a hard worker and it's taking a toll on him missing work for all these appointments. He will be having radiation treatments regardless of a cancer diagnosis or not.

    Please forgive me if I've said things not permitted. I came here for experience, strength and hope and support for us while we travel on this unknown path.

    Thank you for listening.

    lbogie

  2. #2
    Administrator Top User lisa1962's Avatar
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    Sorry you to hear of your situation. What cancer do they suspect? If you can provide this, I am sure we will be able to answer some of your questions.

    Lisa

  3. #3
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    It's so hard to even say the word for I unrationally think that by not saying it will not be true.

    Mri said tumor compatible of sarcoma. Soft Tissue Sarcoma. I have no idea on most of the verbage but I know I will be learning really quickly. I think we are in a state of shock. Went to a general surgeon fully expecting the mass to just be removed, no big deal. Only to hear that he couldn't take the case. We respect that he said that but now we are neck deep in this. It's all so surreal. But this is happening. The surgical oncologist didn't say the words but we are scheduled next week to get the results, meet with a radiation oncologist and a medical oncologist. Preparing as best we can (no one can prepare for this, really) for the worst but are hoping and Praying for the best possible outcome. One baby step at a time. We are so powerless over this. I can't change it, I need to educate myself, get support for me so I can be the best I can be for him. Thank you for responding.

  4. #4
    Moderator Top User HighlanderCFH's Avatar
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    Hi lbogie,

    Here's hoping that your husband's situation is one that can be cured and that you go onto another 30 years of a wonderful marriage.

    Can you tell us where the STS is located on his body?

    If this is helpful, I found a link for you to an informative article from Mayo Clinic.....
    http://www.mayoclinic.org/diseases-c...n/con-20033386

    Wishing him -- and you -- the best!
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Five annual post-op exams 2012 through 2016: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns blue.

  5. #5
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    Large tumor on his outer thigh. Muscles involved and close to nerve. They don't think the bones is involved. Thanks.

  6. #6
    Moderator Top User HighlanderCFH's Avatar
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    I hope it is something that they will be able to completely cure for him. Could be a combination of treatments to accomplish the task.

    Good luck!
    Chuck
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Five annual post-op exams 2012 through 2016: PSA <0.1
    Semi-firm erections 5 years post-op whenever the moon turns blue.

  7. #7
    Senior User
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    Alberta, Canada
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    Quote Originally Posted by lbogie View Post
    Large tumor on his outer thigh. Muscles involved and close to nerve. They don't think the bones is involved. Thanks.
    I have a friend who had sarcoma in his thigh muscle and it was cut out surgically maybe 25 years ago and he is doing fine. Your husbands sarcoma is probably bigger than my friend's, but they can shrink it with chemo and radiation and then cut it out. Good luck.
    66y female, dx @43 in 1992 - DLBCL (aggressive lymphoma) CHOP x 6, rads x 20. 2007- Follicular Lymphoma (FL) grade1-2, stage 2, rads x 20. 2013 relapsed FL, grade 1-2, stage 4. R-bendamustine x 6. Finished Jan 2015. Rituxan maintenance till 2017. 11/2014 bladder cancer, surgery end of Jan 2015.

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,754

    We are purified when we are tested in fire

    Welcome! We hope to be a reliable resource in this very trying time.
    Quote Originally Posted by lbogie View Post
    We've been through, "Richer and Poorer, Better and Worst....in Sickness and in Health.
    Oddly enough, we sometimes find that life is somehow richer, the poorer it is.
    Quote Originally Posted by lbogie View Post
    This is so foreign as my Husband is a hard worker and it's taking a toll on him missing work for all these appointments.
    This IS his job now, and you will witness him shouldering this new workload.
    Quote Originally Posted by lbogie View Post
    I came here for experience, strength and hope and support for us while we travel on this unknown path.
    You are in the right place. I have received an embarrassment of riches here as far as support goes.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 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 type of 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 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 those drugs 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

  9. #9
    Newbie New User
    Join Date
    Oct 2015
    Posts
    4

    Husband's First Day of Chemo

    It's been 2 weeks since I've been on here. They have been a blur and extremely stressful. We got the "official" diagnosis last Tuesday and saw Surgeon, Oncologist and Radiation Oncologist on Wednesday. My Husband has been diagnosed with high grade Stage 3 Soft Tissue Sarcoma. He was admitted today to begin chemo.
    Today was extremely emotional, to say the least. So many fears and emotions.

    He is terrified as we all are but I do not know how to help him. I am not taking things personally as he is lashing out. This is all just such a nightmare and it's only just begun. I do not know what to do or what to say to him.
    It's all so very overwhelming, the paperwork, the medications, the financial issues, the unknown.

    My Mantra is one day, one hour or one minute of the day. I am trying to take one day and one task at a time.
    He insisted that I leave him this afternoon and that was excrutiating, a million times worse than leaving a toddler at pre school for the first time.

    Our Daughter and her boyfriend went over to visit with him this evening. I did not. I feel guilty but I think he needs some time to process his own emotions. I know he is in good hands and will be kept as comfortable as possible. I'm so worried for him. Thankfully, I am ever so grateful for being able to stay with my Daughter and her boyfriend while he is admitted. Frankly, I'm more terrified about going home for 2 weeks in between the cycles. So much to learn and try and remember.

    Just sharing.
    Lois

  10. #10
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
    Posts
    6,754
    Lois, I have moved all of your posts to this thread, as it is easier to keep it all under one roof, so to speak. As well, STS is reasonably rare, so others can benefit from reading this from the start. Is there a counselor, minister, close family member or other who can spend some time with him? We all react differently, but he needs you now more than ever. His emotional journey is his own, and it is his illness, but you are dealing with it better, I must say.

    Since you are bearing all of the logistical weight of running things while he is treated, as well as coping with the (temporary) rejection, please visit often. We will walk you through this as best we know how.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. 50+ tumors with BMI
    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
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, but stopped due to ineffectiveness. 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.
    01/12/15 Belinostat resumed/Failed 02/23/15
    02/24/15 Pralatrexate/Failed 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 type of 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 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 those drugs 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

 

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