leiomyosarcoma from thoracic spine with bone involvement

Posted by michael911 @michael911, Mar 27 3:37pm

I was recently diagnosed with leiomyosarcoma from the thoracic spine with bone involvement. I had a laminectomy from T-4 to T-7 in late January. They are recommending proton radiation and chemotherapy after I am done with radiation because both concurrently will be dangerous for my spine. After multiple consultations even with a sarcoma specialist from Moffitt, they want to give me MAI chemotherapy. I read that leiomyosarcoma is chemotherapy resistant. Does anyone know anything about this or has the same cancer in the same location as I do? Should I seek another opinion at the Mayo Clinic? Please help.

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Hi! I’m a year into my cancer treatments for LMS. It seems that Chemo works the best in shrinking the tumor for me. I’ve been through chemo, radiation. More radiation and now back to chemo. I wish you well on your LMS journey.

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Welcome, @michael911. In addition to the reply from @ashotpets, I'm tagging @elcee who has leiomyosarcoma with bone metastasis.

If you would like to seek a second opinion from leading sarcoma experts at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

Michael, did your cancer originate in the spine or elsewhere?

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@colleenyoung

Welcome, @michael911. In addition to the reply from @ashotpets, I'm tagging @elcee who has leiomyosarcoma with bone metastasis.

If you would like to seek a second opinion from leading sarcoma experts at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

Michael, did your cancer originate in the spine or elsewhere?

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I am interested in your mentioning 2nd opinion to me. When I eas getting ready to start chemo for my leiomyosarcoma last August I called a number for Mayo and thry referred me to the tumor biard who reviewed my electronic records and said that what the specialist at Froedert and my local incologist were recomending were different but both appropriate. They told me I could go there for treatment but it is 3 1/2 hours one way . The receptionist told me they did not have any clinics closer to me so I decided to stay with local treatments as I had been goi g through testing for 5 months and the local oncologist was anxious for me to get started. The lical also gave me the name of a specialist at Mayo he was familiar with so I am still not sure why he sent me to Froedert instead. Both Froedert and Mayo are listed on the Leiomyosarcoma website as approved specialists. I was surprised that UW Carbone Vancer center at Madison Wisvonsin which is only 2 hours from me did not have a sarcoma specialist listed. So my question is might I get better information from the link you shared? And woukd they actually see me for a second opinion since I have already begun treatment elsewhere? I am palliative not curable. Chemo only. Thank you for your help.

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@elcee

I am interested in your mentioning 2nd opinion to me. When I eas getting ready to start chemo for my leiomyosarcoma last August I called a number for Mayo and thry referred me to the tumor biard who reviewed my electronic records and said that what the specialist at Froedert and my local incologist were recomending were different but both appropriate. They told me I could go there for treatment but it is 3 1/2 hours one way . The receptionist told me they did not have any clinics closer to me so I decided to stay with local treatments as I had been goi g through testing for 5 months and the local oncologist was anxious for me to get started. The lical also gave me the name of a specialist at Mayo he was familiar with so I am still not sure why he sent me to Froedert instead. Both Froedert and Mayo are listed on the Leiomyosarcoma website as approved specialists. I was surprised that UW Carbone Vancer center at Madison Wisvonsin which is only 2 hours from me did not have a sarcoma specialist listed. So my question is might I get better information from the link you shared? And woukd they actually see me for a second opinion since I have already begun treatment elsewhere? I am palliative not curable. Chemo only. Thank you for your help.

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@elcee, thanks for jumping into the discussion. I tagged you to introduce you to new member @michael911, who has a similar diagnosis as yours and could use some support.

I mentioned Mayo Clinic to Michael in case he was seeking care with a sarcoma specialist. I apologize for the confusion that you thought the link was intended for you. It sounds like you have already contacted Mayo Clinic and that upon review by Mayo's tumor board they reassured you that were receiving excellent care at Froedert and with your local oncologist. Mayo doesn't want you to incur the cost or inconvenience of travel if you are receiving excellent care closer to home.

How are you doing on chemotherapy? What chemo protocol are you on?

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I am getting gemcitabine one week, and the next week I get gemcitabine plus doxcetaxal. The week afyer thay I am off. I get zofran to prevent nausea both weeks before chemo and the week i get two kinds i also get decadron and onpro to build up my wbc's. I get extremely tired and my RBC's are dropping so once in a while I take an extra week off if I need to ferl better to visit family or something. The cimbination is a more aggresive routine. I am Blessed as I have had 2 CT scans and the tumors in my liver are actually shrinking whixh I have been told does not happen for everyone. The tumor in my right clavicle is staying the sane size which they say us good as the chemo cant penetrate the bone like it can the soft tissues. I partiasly attribute this to "prayer therapy" as I have lots of friends praying for me too.

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@colleenyoung

Welcome, @michael911. In addition to the reply from @ashotpets, I'm tagging @elcee who has leiomyosarcoma with bone metastasis.

If you would like to seek a second opinion from leading sarcoma experts at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

Michael, did your cancer originate in the spine or elsewhere?

Jump to this post

Hi Colleen,

Mine came from the spine, which they believe it is the primary location, but they are not a 100% at this time. All my full body scans has not shone any metastasis thank GOD! I sort out a second opinion at the Moffitt Cancer Institute because the Mayo Clinic doesn't take my health insurance plan and the doctor agreed that MAI chemotherapy will follow my radiation treatments. I am also getting genetically tested to determine if their are any genetic clues that would help with my future treatment plan.

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@colleenyoung

Welcome, @michael911. In addition to the reply from @ashotpets, I'm tagging @elcee who has leiomyosarcoma with bone metastasis.

If you would like to seek a second opinion from leading sarcoma experts at Mayo Clinic, you can submit a request here: http://mayocl.in/1mtmR63

Michael, did your cancer originate in the spine or elsewhere?

Jump to this post

Hello again Colleen,

In addition, my leiomyosarcoma is appearing in a rare location which is the spine and it is also rare that it has bone involvement since it is a soft tissue cancer. The oncologist at the Moffitt Cancer Institute said she has only seen 4-5 other cases like mine. Many others had it in their soft tissues. I have to get proton radiation treatments rather than the conventional photon type due to proximity of the spine and esophagus. My chemotherapy will be impatient for 5 days, then two weeks off, then impatient for 5 days again, etc. This process will continue for at least 3 months or about 3 rounds, then they will decide if I am in remission. My ultimate goal is that it never returns.

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@elcee

I am getting gemcitabine one week, and the next week I get gemcitabine plus doxcetaxal. The week afyer thay I am off. I get zofran to prevent nausea both weeks before chemo and the week i get two kinds i also get decadron and onpro to build up my wbc's. I get extremely tired and my RBC's are dropping so once in a while I take an extra week off if I need to ferl better to visit family or something. The cimbination is a more aggresive routine. I am Blessed as I have had 2 CT scans and the tumors in my liver are actually shrinking whixh I have been told does not happen for everyone. The tumor in my right clavicle is staying the sane size which they say us good as the chemo cant penetrate the bone like it can the soft tissues. I partiasly attribute this to "prayer therapy" as I have lots of friends praying for me too.

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Hi elcee,

My name is Michael and I was officially diagnosed with this rare cancer in early February when the pathology report came back to me. I had a major back surgery (laminectomy from T-4-T-7) on Jan 26th and the recovery process was brutal. I was partially paralyzed due to severe spinal cord compression from the tumor prior to surgery. My back still aches and I suffered from an incomplete spinal cord injury from the damage the tumor had done to my spinal cord. I cannot jog or run any longer or at least for the time being unless it gets better in time. I am currently in physical therapy and I will soon start proton radiation for many weeks ahead and when I am done with that, I will begin the MAI chemotherapy treatment for at least 3 months. I do wish you all the best though and I will keep you in my prayers.

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Thank you Michael. This sure seems to affect everyone differently. One day at a time. I will hold you in my prayers as well

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@michael911

Hello again Colleen,

In addition, my leiomyosarcoma is appearing in a rare location which is the spine and it is also rare that it has bone involvement since it is a soft tissue cancer. The oncologist at the Moffitt Cancer Institute said she has only seen 4-5 other cases like mine. Many others had it in their soft tissues. I have to get proton radiation treatments rather than the conventional photon type due to proximity of the spine and esophagus. My chemotherapy will be impatient for 5 days, then two weeks off, then impatient for 5 days again, etc. This process will continue for at least 3 months or about 3 rounds, then they will decide if I am in remission. My ultimate goal is that it never returns.

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@michael911, you are in good hands at Moffitt to get proton beam treatment. Inpatient chemotherapy sounds like that will be intense. Do you know what type of chemotherapy drugs you'll be getting?

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