Rare differential sarcoma diagnosis
I am 26 years old, writing to inquire if anyone is familiar with myxoid liposarcoma and fibrosarcoma. I recently had a tumour removed with both types of sarcomas, I am currently pending treatment. Doctors are quite shocked and figuring out how to proceed.
I don't have any experience at all with this and as you have a diagnosis I am moving your post to other cancers forum. I hope someone will be by who has some experience. We have a good coping and support forum too, should you feel like posting there for support. We may not all have the same cancers but our feelings are alike.
My best wishes to you.
Aussie, age 59
1987 CIN 111. Cervix lasered, no further problems.
Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.
Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
6 chop14 and Neulasta.
Clean PET April/10, 18 rads 36gy mop up. All done May 2010
Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
Discharged Nov 2014.
May/2012. U/sound, thyroid scan, FNB. Benign adenoma.
Relapse Apr 2016. AITL. Some chemos then on to allo or hap transplant. Onc says long remission was good. Still very fixable. All I needed to hear. I am pumped and ready. BRING IT ON
If pathology was not absolutely certain (even if they were), it is prudent to ask for a second opinion on the pathology. Since this is such a rare and unusual finding, I would think that the doctors would want to be certain.
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
Sorry to hear of your diagnosis, especially with something so rare. My son was diagnosed with fibrosarcoma 10 years ago, and was cured with surgery. We went to an oncologist who specialized in soft tissue tumors and she said she had seen a tumor like his only 6 times in 26 years of practice. We had his tumor typed as part of a rare cancers trial at St. Jude and his tumor was low grade. Per the study protocol he received only surveillance, even though his margins weren't clear after surgery. It never recurred and other than the surgical scar on his wrist you would never know anything had happened to him. I'd recommend finding a soft tissue cancer specialist who has at least seen these tumors before. I was so scared for my son and the doctors were at a loss initially because it was so rare. He came through it just fine, and I wish the same outcome for you.