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Thread: Liposarcoma

  1. #1
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    Oct 2018


    I'm now getting radiation for 5 weeks for this and then 6 weeks off before they do surgery. Been in pain for a while now and have been taking Tramadol and Gabapentin and Ibuprofen. Helps, but still, have pain. Don't really want anything stronger if I can help it. This tumor is in my inguinal area. My groin for those that donít know where it is.
    Iím on week three and the pain from the radiation is now starting. Keeping plenty of Aquaphor and Aloe Vera gel on the area. I have to sleep in a recliner because of the location of the tumor makes it impossible to lay flat without much pain. Basically feels like a knife sticking in me. Getting the radiation treatments is like torture because you must lay flat and in a body form so they can direct the radiation to the affected area.
    They said I would experience pain when urinating, but the only pain I have so far is having a bowel movement. Burns like hell and also keeping that area covered with Aquaphor. I never in a million years thought Iíd end up with cancer, but I did. I will be out of work for 6 months because of this. My mother passed away from Alzihmeirs two years ago and I had said I wish she had had cancer instead because of the fact she lost her memory and all the other problems associated with the disease.
    I now think that was a rather stupid statement to make as I would not wish cancer on anyone. They both suck. Well, thatís my story. Nice meeting you.

  2. #2
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Sorry to hear of this, and very sorry that mom passed due to Alzheimer's. Alzheimer's claimed my mother-in-law. It is true that treatment can be almost as awful as the disease itself. However, 5-year survival runs from over half to 100% depending on the type of cell involved in the malignancy. It may or may not help, but my 5-year survival was fixed at 20% before my prognosis dropped several more times and two more cancers arrived. That was 10 years ago.

    As to daily pain killers, I think your plan is good as long as you can tolerate it. While receiving radiation, they can sedate you or put you completely under - which they may be doing. If not, ask for it!
    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.
    11/19 MRI of brain reveals apparently benign frontal lobe tumor. Has the appearance of a cerebral cavernoma. Watch & wait on that.

    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.

  3. #3
    Newbie New User
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    Oct 2018
    Thanks for the reply. I drive myself to the treatment so I really don't think they would sedate me. It's only two more weeks now I can tough it out. It is working though it has stopped growing. It hasn't really shrunk any, but it is not growing. Right now the thing is hard as a rock. The Dr explained to me that the radiation encapsulates the tumor making excision easier for them to remove. They also have to remove healthy tissue as well to have clean margins. This thing is right above my penis and my worst fear is I'll wake up without one. I hope not, but if I do I'll deal with it.
    I'm also constipated from the Tramadol now and will start taking Metamucil and hope it doesn't worsen. You right about the treatment being worse sometimes. But, the alternative was a tumor growing out of control. I ask the Dr's at first if I did nothing what would happen? He said you be dead in a year, so I then realized the seriousness of this cancer.
    It was diagnosed as stage three.
    Final Diagnosis The above-captioned slide(s), corresponding pathology report(s) and sarcoma clinic notes dated 8/31/2018 have been reviewed as a second opinion to confirm the diagnosis. A. HYDROCELE SAC, SITE NOT SPECIFIED, EXCISION: Fibroconnective tissue with cuboidal epithelial lining compatible with hydrocele sac. B. LEFT SCROTUM, ORCHIECTOMY: High-grade sarcoma most consistent with dedifferentiated liposarcoma (see comment). Tumor measures 6 x3.5 x 2.5 cm in greatest dimension.
    The circumferential margin of the cord is positive for sarcoma. Lymphovascular invasion is indeterminate. The testicle and epididymis have physiological changes. Shohreh Eliaszadeh, MD (Oncologic Surgical Pathology Fellow) Comment The tumor is composed of malignant cells with epithelioid, pleomorphic and spindle cell morphology. In some areas, the tumor cells have large irregular nuclei, prominent nucleoli, and abundant eosinophilic cytoplasm. Occasional multinucleated giant cells are present. There is extensive tumor necrosis and high mitotic rate of up to 15/HPF. Immunohistochemical stains with adequate controls were performed on block B4 and provided by the contributor for review and interpretation at Moffitt Cancer Center. The tumor cells are positive for Vimentin, Ck 8/18, AE1/AE3 (twice), SMA (focal), and desmin (focal). They are negative for S100 (P), SOX10, PLAP, CD30, Caldesmon, and AFP. As per the contributor's report, the case was sent to Johns Hopkins laboratory for consultation by Dr. Jonathan I. Epstein. Additional immunostains (not provided) were performed that revealed malignant cells are positive for MDM2 and negative for WT1, ERG, Calretinin, and Myogenin. The focal area that is suggestive of well-differentiated liposarcoma component is identified (B5). These findings are most consistent with a dedifferentiated liposarcoma. Performing Location The physician professional service reflected in this report was performed at Moffitt Cancer Center, 12902 USF Magnolia Dr. Tampa FL, 33612. CLIA # 10D0290540The facility technical service reflected in this report was performed at Moffitt Cancer Center, 12902 USF Magnolia Dr. Tampa FL, 33612.
    I'm getting treatment at Moffitt Cancer center. They are one of the best in the country so that's a good thing. After my radiation I have to wait 4 to 6 weeks and then they will do the surgery. I will actually have 2. One to remove the tumor and another to reconstruct the area of the tumor. Then it's 6 weeks to recover from that and if all goes well I'll be back to work by the end of February. I will have missed about 7 months of work because of this. It all started when I called my sister who is a nurse and jokingly said I think I have a tumor. She said you probably have a hernia which I did. A double hernia which they use mesh to repair. The Dr also removed the lump which had grown substantially by then. The only problem was he didn't know what it was at the time so he didn't get it all. He did remove my left testicule at the time because it had wrapped around the spermicidal cord or whatever it's called. After he sent it off for a pathology, he then told me it was a soft tissue sarcoma and recommended me to Moffitt.
    By the way, I don't know how you maintain your sanity being diagnosed with so many cancers. You must be tough as a rock. Good luck to you, I wish you success with this disease.

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Thank you for your very kind words. Cancer is a life changer and everything that we do, think or say must be balanced against what would happen without treatment. Life has changed and it does not have to be for the worse - it is all a matter of perspective. Stephen Hawking did not have cancer, but he was profoundly disabled for decades - yet still happy to be alive.

    No matter what our problems may be, there is always someone much worse off. Pondering their lives and their responses to life's changes helps us to see ourselves in a new light. Life becomes more precious when we are aware of its fragility, thus each day can be viewed as a blessing. And even if it seems to be a curse, it lasts only 24 hours and then it is gone.

  5. #5
    Newbie New User
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    Oct 2018
    Well, at the beginning of this year I would have never believed that I would end up with cancer. Like all people you never think it will happen to you. But, I guess you could say that about any dreaded disease or other accident that could affect your life. You just never know what lurks behind the corner. As mentioned before I was diagnosed with Liposarcoma in the inguinal area. After 5 weeks of radiation to slow it down it's been almost 6 weeks of recovery and now I'm scheduled for surgery Wednesday not only to remove the tumor, but I'm having a penectomy, as well as the radiation, didn't halt the growth enough. In the middle of radiation,n the Dr had to come up with another plan because the radiation wasn't being as effective as they hoped. Well, what began the year as what was just supposed to be a hernia has now cost me my manhood. I can't say for sure how I really feel about the prospect of losing my penis. I never gave it much thought, to be honest.
    But, with the massive pain, I'm enduring now, I'm more than willing to make that sacrifice and let the Dr know that in no uncertain terms if that's what has to happen they make it happen. I am 56 years old and in all my life had never taken drugs and even wanted too. Never even smoked pot. Drank when I was younger, but I hated beer and booze. Tasted nasty to me. So taking all these narcotics for pain has been a real eye-opener. Did I mention constipation? Yea that bites you in the ass too. But, lucky for me I've been ok with it and haven't had too many issues. It's just the constant pain that takes any enjoyment out of life completely away as I'm sure most of you are aware. When you have to take something every 4 hours just to remain at a 5 then you know it's not going to be a good day. As I write this I just had a brain fart and forgot what else I was going to talk about. So I'll leave that until next time. Good luck to the rest of you all going through this.


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