Need help effectiveness of chemo on sarcomas

grammy05
grammy05 Member Posts: 5
in Sarcoma #1
Have pleomorphic liposarcoma. Radical resection done, and "showed" no remaining cancer. CT "showed" no cancer in chest, abdoman, pelvic area. Doing 7wks of radiation. Family doctor wants me to do chemo, surgeon and radioloigy oncologist say it doesn't work. University of Michigan sarcoma center says my decision, would improve chances by 0 to 12%, but I could tolerate the chemo "well" because I am otherwise healthy (for 64yrs old). Has anyone had any good results with chemo for this type of cancer? If so,did you have chemo or radiation first?

Comments

  • lfrankva
    lfrankva Member Posts: 4
    #2
    Chemo

    I had a high grade, aggressive, stage 3, 15 cm sarcoma removed from my shoulder. As a precaution, because the biopsy was inconclusive, I also had limb sparing surgery. I had a proximal humeral replacement done. I am now missing all the muscle over the shoulder blade and some of the deltoid. I had a muscle flap reconstruction done to cover the shoulder blade.
    Prior to surgery I had radiation and after surgery I had chemo. It was rough. I was scheduled for 4 rounds-5 days at a time. I was lucky that I didn't have to be admitted to a hospital for my chemo, my dr. could do it in his infusion center.
    I felt like crap after round 2, I had 6 blood transfusions and 2 platelet transfusions. I never made it to round 4. I would do it again. The chemo was unlikely to kill me and to thwart the chance of having the beast come back was worth it. I need to be here on many levels.
    It's an individual decision but again to have that chance for it not to come back ....
  • grammy05
    grammy05 Member Posts: 5
    #3
    lfrankva said:

    Chemo

    I had a high grade, aggressive, stage 3, 15 cm sarcoma removed from my shoulder. As a precaution, because the biopsy was inconclusive, I also had limb sparing surgery. I had a proximal humeral replacement done. I am now missing all the muscle over the shoulder blade and some of the deltoid. I had a muscle flap reconstruction done to cover the shoulder blade.
    Prior to surgery I had radiation and after surgery I had chemo. It was rough. I was scheduled for 4 rounds-5 days at a time. I was lucky that I didn't have to be admitted to a hospital for my chemo, my dr. could do it in his infusion center.
    I felt like crap after round 2, I had 6 blood transfusions and 2 platelet transfusions. I never made it to round 4. I would do it again. The chemo was unlikely to kill me and to thwart the chance of having the beast come back was worth it. I need to be here on many levels.
    It's an individual decision but again to have that chance for it not to come back ....

    about chemo
    Thanks for sharing your decision and experience with chemo. Which drugs did they give you? Do you feel you received the full benefit of the chem by not completing the 4 rounds? I am not sure I am as strong as you to go through the chemo. My parents and husband had it and they were very sick from it. I have a lot to think about. Wish you good health.....and cancer free.
  • grammy05
    grammy05 Member Posts: 5
    #4
    lfrankva said:

    Chemo

    I had a high grade, aggressive, stage 3, 15 cm sarcoma removed from my shoulder. As a precaution, because the biopsy was inconclusive, I also had limb sparing surgery. I had a proximal humeral replacement done. I am now missing all the muscle over the shoulder blade and some of the deltoid. I had a muscle flap reconstruction done to cover the shoulder blade.
    Prior to surgery I had radiation and after surgery I had chemo. It was rough. I was scheduled for 4 rounds-5 days at a time. I was lucky that I didn't have to be admitted to a hospital for my chemo, my dr. could do it in his infusion center.
    I felt like crap after round 2, I had 6 blood transfusions and 2 platelet transfusions. I never made it to round 4. I would do it again. The chemo was unlikely to kill me and to thwart the chance of having the beast come back was worth it. I need to be here on many levels.
    It's an individual decision but again to have that chance for it not to come back ....

    about chemo
    Thanks for sharing your decision and experience with chemo. Which drugs did they give you? Do you feel you received the full benefit of the chem by not completing the 4 rounds? I am not sure I am as strong as you to go through the chemo. My parents and husband had it and they were very sick from it. I have a lot to think about. Wish you good health.....and cancer free.
  • geminigirl
    geminigirl Member Posts: 3
    #5
    Abdominal Sarcoma - Chemo & Radiation
    I had a 13cm high grade stage 3 abdominal sarcoma (rare location). Radical resection was done in Sept 2010. Originally they thought the tumor was benign. In Oct 2010 after the pathology report came back, they went back in to get bigger margins. They took my abdominal wall muscle and left oblique and closed the area with a muscle flap and skin graft from my thigh. I had 4 rounds of chemo starting in Jan 2011. I was in the hospital for 5 days each time. My oncologist said my chances would improve less than 10% but I figured I would do anything to improve my odds. When the chemo was finished, I had 7 1/2 weeks of radiation. In Feb 2012 they found a 3cm mass on my pancreas after my 3 month check up CT scan. Turned out to be a sarcoma (very rare to be on the pancreas). In March they performed the Whipple taking 1/3 of my pancreas, parts of my stomach and intestine and my gall bladder. Within a month following that surgery, I was sent to the Sarcoma Center at U of M and the dr there said no chemo or radiation this time as it apparently didn't have an effect. My last CT scan (this month) showed a nodule on my lung that increased 2.5 times in size, which is a good indication of cancer. I saw my surgeon last Wed and he referred me back to my oncologist. I have an appt with him on Monday.
    I would still choose to do the chemo and radiation, despite the harshness of the effects (multiple fungal infections, MRSA, transfusion, nausea, etc, etc) because of the chance of increased odds of keeping the sarcoma beast at bay. And maybe it did work somewhat, who knows? I'm 63 now. I should mention that I had to have open heart surgery to replace a valve (congenital birth defect) and an emergency triple bypass due to complications caused by the new valve in May 2010, before they could do they could do the original resection.
    Good luck to you, I'm sending prayers your way.
  • gvonbargen
    gvonbargen Member Posts: 1
    #6
    chemo on MFH-- Malignant Fibrous Histiocytoma or Pleomorphic
    I want to offer a positive comment about chemo-- my husband (healthy, 50s)had a 5cm tumor in his thigh-- U of MN drs. deemed it to be MFH (or the newer term--Pleomorphic Undiferentiated Sarcoma).
    First the ortho surgeon told him he'd remove it, radiate it, and he'd be cured! But the oncologists must've advised him otherwise, so the team dictated chemo first.

    Four rounds of doxyrubicin & ifosfamide-- first weeklong at hospital, next 3 rounds at home-- then surgery-- found the tumor 95% dead on removal, clear margins.

    Doctors saw no need to radiate or give more chemo post-surgery, believing the chemo vanquished any unseen metastic cells. We and will see Dr. Skubitz, oncologist, 2 months post-surgery and hear when future monitoring scans begin.

    If this encourages anyone, I am glad. Chemo was not fun, but DH (dear husband) was not too nauseous-- meds for that are good, nowadays-- yes, tired, yes, lost his hair all summer, but the chemo really hit that ___ cancer.
  • geminigirl
    geminigirl Member Posts: 3
    #7
    geminigirl said:

    Abdominal Sarcoma - Chemo & Radiation
    I had a 13cm high grade stage 3 abdominal sarcoma (rare location). Radical resection was done in Sept 2010. Originally they thought the tumor was benign. In Oct 2010 after the pathology report came back, they went back in to get bigger margins. They took my abdominal wall muscle and left oblique and closed the area with a muscle flap and skin graft from my thigh. I had 4 rounds of chemo starting in Jan 2011. I was in the hospital for 5 days each time. My oncologist said my chances would improve less than 10% but I figured I would do anything to improve my odds. When the chemo was finished, I had 7 1/2 weeks of radiation. In Feb 2012 they found a 3cm mass on my pancreas after my 3 month check up CT scan. Turned out to be a sarcoma (very rare to be on the pancreas). In March they performed the Whipple taking 1/3 of my pancreas, parts of my stomach and intestine and my gall bladder. Within a month following that surgery, I was sent to the Sarcoma Center at U of M and the dr there said no chemo or radiation this time as it apparently didn't have an effect. My last CT scan (this month) showed a nodule on my lung that increased 2.5 times in size, which is a good indication of cancer. I saw my surgeon last Wed and he referred me back to my oncologist. I have an appt with him on Monday.
    I would still choose to do the chemo and radiation, despite the harshness of the effects (multiple fungal infections, MRSA, transfusion, nausea, etc, etc) because of the chance of increased odds of keeping the sarcoma beast at bay. And maybe it did work somewhat, who knows? I'm 63 now. I should mention that I had to have open heart surgery to replace a valve (congenital birth defect) and an emergency triple bypass due to complications caused by the new valve in May 2010, before they could do they could do the original resection.
    Good luck to you, I'm sending prayers your way.

    Abdominal Sarcoma - Chemo & Radiation
    Forgot to put it in my first post so I thought I should add - the chemo I had was doxyrubicin and ifosfamide.
    P.S. I saw my oncologist on Monday and he referred me back to my oncologist at the Sarcoma Center at U of M. They have access to all the clinical trials and know more about sarcomas. So far, he and my surgeon want to wait to see if there are more nodules that aren't big enough to be seen on a CT scan at this time. They don't want to do anything just yet as it may not be enough or on the other hand, it could be overkill. But, they both go along with whatever course of action U of M decides. If their oncologist offers chemo I will definitely do it.
  • Spacey84
    Spacey84 Member Posts: 2
    #8
    chemo and sarcoma
    I had a sarcoma removed from my left thigh a little over a year ago. I did 33 radiation treatments and then 18 chemo treatments as 'insurance'. (I had read chemo is not effective on sarcomas) I was hospitalized for 3 days every 3 weeks and given adriamycin and ifosfamide/mesna. My oncologist called me Chemo Monster, the poster child for chemo, and one tough cookie. This was a very harsh regimen and I had very few side effects compared to most people. During the third treatment, my hemoglobin dropped and I had to have a blood transfusion and had one every treatment after that. I was given nausea meds and never took them. I was back at work 3 days after each round. I did lose my hair, but I was alive! Everyone responds differently to treatments, so try not to let the horror stories scare you. I was willing to do anything to keep the cancer from spreading or coming back.

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