Community Member
3 months agoI have been in a sarcoma battle since last March. Myofixial sarcoma high grade. Tumor removed last fall after 25 radiation sessions. Located in left wrist. Had clean scans up since surgery. However a new tumor was found by yours truly about 3 weeks ago, marble size on same arm at the midpoint and removed this last Friday. The journey is tough. Clinging to my faith. Radiation to once again be employed. Looking for brighter days with my wife and three teenage children.
Community Member
3 months agoFinding hope during a recurrence can feel overwhelming, but many in this community have found strength by focusing on the present moment with loved ones while staying connected to what brings meaning and comfort. The support from fellow sarcoma patients here who understand this unique journey can provide encouragement and practical insights as you navigate treatment decisions with your medical team.
Community Member
a month agoI like you was diagnosed with the same in my leg. Had it surgically removed and had a couple of skin grafts done. About to venture into the radiation treatments. I guess what is behind me I have dealt with but the reoccurrence is what scares me the most. How are you mentally dealing with it? I wish you the best.
Community Member
a month agoMentally I am trying to stay strong. I begin radiation once again this week. I have rebuilt range of motion and strength but still have a ways to go. My faith keeps me going. I suspect that my background in health education and counseling at the professor level also helps. My nursing and other health care students get to see my story up close and personal. I have changed a lot to my diet. Not sure if it helps? Perhaps a placebo effect. I believe the healthcare crisis can be overcome. I just turned 60. I have a student who is early 20’s who has bone cancer. Life is unpredictable. Prayers to you.
Community Member
15 days agoI underwent abdominal surgery in Feb 2019 to remove a tumor. I woke up several days later on a ventilator. To this day, I never asked how long I was on the vent. Bc it doesn't matter..What matters is I woke up..Whereas, I was told that the tumor had backed into my right kidney and adrenal gland. Which were removed, and my IVC had wrapped around it. Which had to be cut and grafted..Also, I was administered 8 pints of blood..All of this was revealed to me when I woke up from the ventilator. Tests revealed the tumor was benign. However, in August, I began experiencing severe pain in my left hip Joint. Which revealed a tumor. I underwent a biopsy and cryoablation. Afterwards, I was diagnosed with leiomyosarcoma. In Feb 2020, I experience severe pain in my right hip joint . Which revealed a tumor in the exact place the tumor was located on the left hip joint. I underwent a biopsy, and microwaveablation. It was cancerous, as well.. Afterwards, I took several rounds of radiation off and on bc tumors were revealed in bilateral shoulders, stomach, lungs, the other kidney, and back. I was told the tumors were too small to treat with chemo. In 2022, I went to MD Anderson to get a second opinion. Bc they have an area for various sarcoma patients. At first, I was administered votrin. It helped but I had a lot of side effects. Afterwards, I was administered 6 rounds of chemo. The tumors shrunk for a year and started growing again. In 2023, I underwent 5 rounds of radiosurgery . The tumors shrunk for a year but started growing again. In 2025 I underwent 5 rounds of chemo. Which shrunk the tumors. But they started growing again. Therefore, I started chemo again in Nov 2025 of trabectedin. It's administered for 24 hrs, once every three weeks. I receive it on a Tuesday and go back on a Wednesday to have the pump removed. The side effects are not too bad but I take steroids three - four days after treatments. Which helps subside the side effects. I am told I will have to take chemo indefinitely. But I clam in Jesus name - through God's grace and mercy I am going to get better and won't need any more treatmentsI. I claim the same for you all!! I live over 400 miles from MD Anderson in Houston, TX. However, I go every three months for lab, images, and a treatment plan. Then, my Oncologist here works closely with the Dr there and carries out the treatment plan. I have undergone doxyrubicin but it was too strong for me..Trabectedin is working well and it doesn't take your hair out. It wouldn't matter if it did bc I have lost my hair numerous times during other treatments. It doesn't matter bc I have gotten accustomed to wearing wigs and they're so convenient. I take OxyCodone 10-335 for pain and promethazine for nausea. I was taking morphine, as well but my pain is managed by the oxy only, now. Also, I take 1 Claritin daily for 5-6 days after treatments. It helps with bone pain. I dismissed it when my Dr mentioned it but it does work.. Watch your carbs and sugar intake bc I'm told that cancer cells feed off of sugar..Also, I take an XGeva Injection - once every 4 weeks to strengthen my bones. I am sorry you all are going through this. But your faith, positive attitude, research, ask a lot of questions and surround yourself with positive people will make this journey easier..Drs can only guess of a life expectancy. But only God knows that. Give God the glory for working through your Drs. We're going to defeat this - it will not defeat us . Ask your Drs. about trials and continue to inform them that you choose life and will beat the odds..This is only a minor setback to add to your testimony. In order, to encourage others. I wish you all the best and uplifted in prayers!!🙏🙏❤️❤️
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