Undifferentiated Pleomorphic Sarcoma

mimi1978
mimi1978 Member Posts: 2 Member
edited February 2023 in Sarcoma #1

My husband was diagnosed in early 2021. He had a large fast growing mass on his upper arm. Radiation and brachytherapy brought the mass down to size for his surgery. The surgeon removed the mass but had to go back in a day later to get clear margins. Wound vac for a couple months then infection set in and they removed the vac. Infection in bone. Three more surges to close wound with skin flap. Ten weeks antibiotic therapy. Mets to lungs found in January of this year. He began Gemcitabine and Docitaxel. He has had ten rounds. Tumors in both lungs stable. Now dr has him on a chemo holiday for three months. She reminded us that it can’t be cured and go have fun this summer. He has so much swelling from chemo - hoping it will go down to enjoy this summer. He is struggling with knowing he will die from this and seeing stable scans. I struggle with making him as comfortable as I can.

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  • Narcissus
    Narcissus Member Posts: 3 Member
    #2

    My husband was also diagnosed in 2021. I can identify with so many things you say. My husband's Sarcoma has metastasized to his lungs.He has been treated with the same cancer drugs. Every 6 weeks we drive 8 hours to MD Anderson to have a PET Scan and visit our Sarcoma specialist there. Anxiety just almost overcomes me as we wait for our oncologist to come in and give us the latest update. We are to the stage where we need to make some decisions about "quality of life" vs. length of life. I know we need to ask our oncologist whether the side effects from treatment are worth the few months that my husband's life could be extended. I just do not want to ask this questions? I do not want to hear the answer. Our number one priority is that he enjoy the months he has left. I do not want him to be exhausted all the time and dealing with aches and pains. Have you read the book "Being Mortal?" It provides a wonderful perspective on life and living with cancer.


    It is a gift to talk to another wife who is on this caregiver journey with her husband.

  • mimi1978
    mimi1978 Member Posts: 2 Member
    #3

    Today was my husbands check up after a three month break from chemo. The lesions have all grown with one doubling in size. The only thing we can do is go back to chemo. We have to bring his cardiologist onboard because of his bad heart. Our oncologist want her to monitor him during treatment. Im stunned right now. He is feeling so good! He has no symptoms. If she had t showed us the scans I would t have believed her. His lungs are full of lesions. They only track the larger ones.

    We will fight. And pray a lot. And trust God in His plan. I can’t say I understand that plan. My hope lies in trusting God.

    I pray your husband will find comfort and peace. You as well. Thank you for writing back.

  • Narcissus
    Narcissus Member Posts: 3 Member
    #4

    I am so sorry to hear this news! I am thrilled your husband is feeling good right now. We just have to take this one day at a time. I try to enjoy every sweet moment I have my husband. Today I held his hand as we walked around a beautiful, tree shaded walking path. We had to pause by the creek and sit on a bench for awhile so that he could catch his breath. I tried to just drink in the trees and green grass and gentle summer air with my husband by my side. He is struggling with neuropathy and has a difficult time walking

  • Frighter1985
    Frighter1985 Member Posts: 2 Member
    #5

    Hi Ladies, Where are your husbands being treated. I am a a sarcoma patient since 1985 at age 13 I got diagnosed with a tumor in my right arm and because of the treatment radiation and chemo. I keep getting other tumors in 2020 when Covid started I was diagnosed with undifferentiated pleomorphic sarcoma in my neck, arm and scapular. I had my right arm and shoulder amputated. Six months later, they had to go back in on the sidewall of my chest and remove another tumor. Same thing UPS. It was a very aggressive tumor and would come back if I did nothing. Because I’ve had so much chemo. I could not do any more chemo therapy. so my doctors in New York recommended I do immuno therapy. I’ve done a year of keyTruda. So far I have no tumors. But I am getting scanned this month and pray that no Tumors have grownM since the immunotherapy is out of my system now. They said, sometimes the body can go back to what it was but if it does come back, then I would have to go on two types of immunotherapy. I am only the second person that they’ve use this, for the first person had tumors all over her body from sarcoma and she went into remission if the chemo is not working for your husband look into a place that’s doing immunotherapy the side effects are nothing like the chemo I feel like I’m not even taking anything. The only bad thing was that it did wipe out my thyroid, so I am on thyroid medication , and from all the chemo, I have to be on her medication to watch my ejection fraction rate but that’s gone back to normal to since I’ve been on this medication but overall it is a lot easier than regular chemo makes your body fight itself. I hope your husband to doing well , look forward to talking to you again from upstate New York.

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