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Thread: pleomorphic sarcoma - urgent advise please

  1. #1
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    pleomorphic sarcoma - urgent advise please

    My father 80years old has been diagnosed with pleomorphic sarcoma. My father complained continous pain in left lumbar region, we got the ultrasound, followed by CT scan done. We found a 10cm x 9cm tumor pushing left kidney up, and we rushed him to nearest cancer treatment center.

    Our Oncologist MD ordered few blood tests and biopsy, he got preliminary report and said this is pleomorphic sarcoma, some soft tissue type of cancer which is very aggressive. MD advised us to go through PET CT scan to spot if the cancer has spread. We will wait for the final reports tomorrow and need advise on whatís the best way forward to treat.

    Our Oncologist said, given my fatherís age, if Sarcoma is not spread to other parts of the body, the best way to treat is to surgically remote the tumor and apply radiation at the site. He further said, due to proximity of the tumor to the kidney, we might lose a kidney during the surgery.

    If PET CT scan reveals the spread, he said we donít have good options, he does not recommend chemo due to the 80 years age, and he says Sarcoma success curing rates with chemo is limited to 30 to 40%.

    We are really shocked and scared. Appreciate if anyone with similar conditions have gone through similar conditions. We are in India, we are getting my father treated in Hyderabad.

    Thank you much in advance for the advise.

  2. #2
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    Quote Originally Posted by subsrvm View Post
    My father 80years old has been diagnosed with pleomorphic sarcoma. My father complained continous pain in left lumbar region, we got the ultrasound, followed by CT scan done. We found a 10cm x 9cm tumor pushing left kidney up, and we rushed him to nearest cancer treatment center.

    Our Oncologist MD ordered few blood tests and biopsy, he got preliminary report and said this is pleomorphic sarcoma, some soft tissue type of cancer which is very aggressive. MD advised us to go through PET CT scan to spot if the cancer has spread. We will wait for the final reports tomorrow and need advise on whatís the best way forward to treat.

    Our Oncologist said, given my fatherís age, if Sarcoma is not spread to other parts of the body, the best way to treat is to surgically remote the tumor and apply radiation at the site. He further said, due to proximity of the tumor to the kidney, we might lose a kidney during the surgery.

    If PET CT scan reveals the spread, he said we donít have good options, he does not recommend chemo due to the 80 years age, and he says Sarcoma success curing rates with chemo is limited to 30 to 40%.

    We are really shocked and scared. Appreciate if anyone with similar conditions have gone through similar conditions. We are in India, we are getting my father treated in Hyderabad.

    Thank you much in advance for the advise.
    I would like to provide an update on the progress so far ...

    PET CT scan report:
    ------------------------
    From the report Ö everything came clear except, the following in abdomen:
    Technique: Whole body CECT & PET scan was performed from vertex of the skull to mid-thigh after injecting about 10 mCi of 18F FDG intravenously. Scan was acquired 60minutes post injection.
    Abdomen: Note is made of a moderately FDG avid (SUV max: 6.1) relatively well-defined heterogeneously enhancing (predominantly hypotenuse) soft tissue mass lesion with internal separations (~ 11.0cm x 7.8 x 7.9 cm) in retroperitoneum in left lumbar region. The lesion is seen involving left psoas muscle and left posterior aspect of diaphragm. It is seen abutting the postero-medial surface of the left kidney and is seen pushing it anteriorly. Mild precessional fat stranding noted. No obvious precessional nodes noted.


    ONC OP MD suggestion/advise:
    ---------------------------------
    This is the case of pleomorphic sarcoma, high grade, and this type of cancer is highly aggressive.
    As the tumor did not spread, ONC MD says removing the tumor surgically is the only option. They may give radiation after surgery to control. Since it is closer to the kidney, we may lose kidney to remove the tumor (when surgery is performed).
    From the CT scan, ONC MD says the tumor seems to be not attached to kidney or other organs, it is not touching the bowel.

    ONC Surgeon review:
    -------------------------
    Consulted two expert Oncology surgeons in Hyderabad.
    First surgeon said since the patient has pain, the tumor has probably entered nerves. Surgery is possible however the patient may lose kidney. This surgeon said the tumor is in advanced stage and we canít guarantee complete removal.
    The second surgeon said the tumor is touching the psoas and removing the complete tumor may not be possible, he said he will examine the patient further and check with his radiologist to further advise on surgery.
    We are researching further to see whatís the best possible treatment.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    I am sorry to welcome you here under these circumstances. We are not doctors, so we cannot advise on treatment. However, what the doctors have told you sounds quite reasonable. Here is a little bit of infirmation from Wikipedia: https://en.wikipedia.org/wiki/Pleomo...tiated_sarcoma The news is not as bad as it could be, especially since the tumor does not seem to have invaded other organs. The pain could very well be from the tumor pressing on a nerve in his lumbar spine. But, all of this depends upon him getting into surgery. Imaging, whether MRI, Ultrasound, PET, CT or X-ray, is bascially a type of photograph. Nothing is better or more accurate than a physical examination of the tumor during surgery, to understand the extent of its involvement in his body. Let us hope and pray that all comes out as well as possible. Please let us know how the surgery goes.
    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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    Thank you for the advise and support. We consulted 2 expert oncology surgeons in Hyderabad, I've one more consultation with the surgeon before we proceed with surgery followed by radiation. I'll post updates to this thread as things roll out.

    I've also received advise from a US surgeon, and he advised me to make sure the right kidney is fully functional so in case of surgical complication we can afford to lose the left kidney. He also advised to leave some part of the tumor (since it perhaps touched/involved the diaphragm and psoas muscle, the left out section may be controlled with radiation. Dr said chemo is not an option given patients age (80 years).

    We are hoping for the best, god help us. Thanks to this forum and community for all the information and support.

  5. #5
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    Hi All, I would like to post update regarding my father's sarcoma. He had a major abdomen surgery on July 13th to remove the tumor and left kidney as the tumor engulfed the left kidney. He is discharged from hospital on June 23rd, and father is recovering slow, we are back at home town and got some help from rest of the family.

    The surgeon said there is infiltration to diaphragm and they removed part of it and repaired the diaphragm.

    I consulted medical oncologist in Hyderabad post surgery, he suggested that Chemo is not advisable for this case, and advised to go for adjuvant radiation therapy within 4 to 6 weeks from the date of surgery. I was told the radiation therapy need to be given for 1 month (30 sittings).

    Please suggest if adjuvant radiation is advised/mandatory in this case and if RT will really help. Please suggest the best course of treatment post surgery for my father, consider his age (80 years) and the potential risk with radiation and side effects. I'm consulting few RT Oncology MDs in Hyderabad, India.

  6. #6
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Location
    Pacific NW, USA
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    Thank you for the update. I would listen to the experts. Your father's age is the major limiting factor in his treatment.
    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

 

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