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Thread: Anyone else diagnosed with Myxofibrosarcoma?

  1. #1

    Question Anyone else diagnosed with Myxofibrosarcoma?

    I have been doing a lot of research since I have been diagnosed with Myxofibrosarcoma a week ago. Not a lot is known about this rare form of cancer ( It has been first diagnosed in 1993 ) and everything that I read online doesn't really make me feel any better. My hope is that there is someone, somewhere out there who has or is going through this as well. What I do know now is that this is a cancer that has a median age of 67 years old and that it mostly happens in males. I also have read that there is a lot of amputations that happen as a result of this cancer, and have been told by my doctor as well that there is a high probability of my left leg being amputated, but they are going to try and do everything possible to save my leg. The kicker of this all is that I am 34 years old, and female, so I guess these factors thrown into the equation add up to the rarity of this cancer even more. If there is anyone out there who has or have had this form of cancer, or a loved one, I am calling out to you. I have a ton of questions and I am eager to hear stories and experiences in the hopes to help me cope with this difficult time in my life. I thank you all in advance
    Last edited by ravendarkhart619; 03-04-2014 at 04:28 AM.

  2. #2
    Thank you sooo much for the info and links! Very helpful. So far I am 9 days away from meeting with the medical and radiation oncologists to get the ball rolling on shrinking this thing. Everything I have read from your post has given me peace of mind that I have chosen the right facility and I am taking the right steps into getting better.

  3. #3
    Newbie New User
    Join Date
    Dec 2014

    myxofibrosarcoma on the head

    I was diagnosed with myxofibrosarcoma on the right side of my head. 2 cm, stage 2/3
    Headed to MD Anderson for what looks like surgery and radiation. I am looking for anyone who has more information, especially someone that may have presentation similar to mine with regard to location. I am a 32 yr old female (also unusual it seems) any advice or info is helpful
    Also wondering how ravindarkart619 is doing???

  4. #4

    Red face Ravendarkhart update

    Quote Originally Posted by cctx View Post
    I was diagnosed with myxofibrosarcoma on the right side of my head. 2 cm, stage 2/3
    Headed to MD Anderson for what looks like surgery and radiation. I am looking for anyone who has more information, especially someone that may have presentation similar to mine with regard to location. I am a 32 yr old female (also unusual it seems) any advice or info is helpful
    Also wondering how ravindarkart619 is doing???

    Hello CCTX,

    Sorry I have been silent for a long time. Here is how things went for me.......

    I was diagnosed with stage 2 aggressive/intrusive Myxofibrosarcoma of my left leg as I believe I previously stated. I underwent Chemo and Radiation in the hopes of shrinking my tumor to the point that I could undergo limb salvage surgery.

    My treatment started 4/7/14 and consisted of 3 rounds of continuous infusion MAI (Doxy/Ifos/Mensa)chemo administered over a 5 day hospital stay per round. I had about a week/week and a half break in between treatments where I was given radiation treatments daily for 5 days at a shot, and that totaled 22 rads visits. After completing treatment on 6/3/14 my oncology staff and I were pleased that my tumor seemed to respond well and had shrunk almost 70%, so then it was off to have my radical resection/limb salvage surgery on 7/16/14. I had a very large portion of my calf, side of my knee, hamstring removed ( all in all about the overall area of an NFL sized football) and had to have my open wound covered in a wound Vac for 7 days while I stayed in the hospital in the hopes that when the pathology report came back they would continue to close me up and do a skin graft and muscle flap to put me back together again....Well the evening before I was to go back into surgery to be closed up my surgeon and medical oncologist told me that my pathology came back with negative margins and that the cancer had spread into my shin bone and muscle so deep that they could not see it with any scans, but knew it was there because of the pathology, and that I had two decisions at that point. 1- I could continue with the surgery to patch me back up and have to do more chemo and radiation and hope that it would kill the cancer ( which they did not believe it would kill it because at that point it was spreading like wildfire) and take my chances of it spreading so fast that it more than likely would be fatal and then they would have to resort to surgeries and amputations to save my life OR 2- I could amputate now, be cancer free, and be able to live my life again and only maybe worry further down the road of cancer ever coming back in any other form.

    So within two hours of me learning this news, I chose amputation, and less than 12 hrs later on 7/23/14, I was under the knife to have my leg removed 6" above my knee. It was an easy decision to make, because afterall a leg is just really aesthetic, and I would rather give up my vanity than my life.

    Now 4 months post amputation I am adapting well to my new form of "normal life", I passed my 3 month marker of clear scans and NED, and I honestly have NEVER felt this healthy in well over a decade. It is nice to not always be in pain, sick, exhausted, cranky, not mobile.

    Now my only aggravation is trying to work with my county OVR office to help me pay for my microprocessor leg that I desperately need so that I can return to work.

    Thank you much for asking about me, and feel free to keep posting to me. I have a lot of information on this topic (lol) and maybe I can help refer you to some great online support groups and websites for information if you haven't joined any already that I use that helped me get through all of this with my sanity in tact.

    Stay strong my friend, and do not ever give up hope! Keep fighting and kick cancer's ass just like I did!

  5. #5
    Super Moderator Top User Hope2012's Avatar
    Join Date
    Nov 2011
    Thanks for coming back to update us on your progress! You've been through a lot but you attitude and love for life definitely is felt in what your words. Stories like yours help inspire others here.
    This dark night shall end and the sun will rise again...

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

  6. #6
    Good for you. I would have done exactly the same. I may be facing the same decision though my Myxofibrosarcoma is in arm.

  7. #7
    Newbie New User
    Join Date
    Apr 2018
    Hello... I was diagnosed yesterday with myxofibrosarcoma. High grade aggressive. I am an artist and musician and the cancer is in my playing/drawing arm. I guess from what I am reading here that I may have many hard choices ahead of me. I will get scans next week for staging, etc. I am frightened of all that lies ahead. I lost my dear husband 2 years ago to small cell lung cancer. He was so brave and right now I wish I had his courage and hope. I feel like such a coward and have to be strong for my kiddos. So glad I found a place where I can discuss this a bit.

  8. #8
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    tsburkey, I made a thread for you, as this thread is years old.
    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.


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