Metastasis Synovial Sarcoma to Both Lungs

Yee Loon
Yee Loon Member Posts: 2
edited March 2014 in Sarcoma #1
My father was diagnosed with synovial sarcoma at the right side of his abdomen about 2 and a half years ago. He underwent surgery to remove the tumor plus radiation. 2 years later, the tumor returned to the same location and it grew from the right side and extended to the back. The tumor encased part of this spine causing weakness in his right leg. In addition, the cancer also spread to both his lungs. Resection is not possible as it will affect the spine.

He went to John Hopkins clinic and received AIM chemo for 5 cycles. Other than the side effects, he has improved overall. His leg and back do not hurt as much as before but the original site of the tumor still does. The tumor has not reduced in size and the number of cancer spots in his lungs are still the same. PET CT scan shows little activity in the tumors, but biopsy results show otherwise.

Currently, his cycle of chemo has ended and we are waiting. We will visit the oncologist in a month time and a new CT scan would be done.

Normal prognosis for metastasis to the lungs has a survival rate of 30% over 3 years. This can drop to as much as 5% over 5 years. Our family do not have hopes that the cancer will go away, but pray that the cancer can live with him but do not take his life away.

Comments

  • ttamng
    ttamng Member Posts: 10
    #2
    Hello,
    How is you father doing? My name is Tammy. In 2001, my sister had several lumps on her left foot and the Dr. said that they were normal tumors. She went in for surgery, just to take the lumps out. In 2006, those lumps came back larger and finally they found out that was cancer (synovial sarcoma). It was too late..... They cut her foot to her ankle and she went back for exam after that they told her that everything was clear (misdiagnosed). In mid 2008, she had diagnosed that it had spread to her left lung. She finally went on chemo in Oct. of 2008.....She is very weak now and they has stopped the chemo after 10 cycles. She was very weak so her chemo cycles was not met the timelines.
    She lives in Vietnam. I am so sad since I could only help her to pay some of the chemo cost and cannot see her because I live too far away. The last couple of days, she is more sick and she doesn't have enough blood count.
    I just read your post and found out that your father has the same problem as my sister. I'm praying that she is not going to leave this life that soon (she is only 43 years old and have a daughter who is only 8). I also hope that your dad is going to get better. :(
    Tammy
  • Yee Loon
    Yee Loon Member Posts: 2
    #3
    ttamng said:

    Hello,
    How is you father doing? My name is Tammy. In 2001, my sister had several lumps on her left foot and the Dr. said that they were normal tumors. She went in for surgery, just to take the lumps out. In 2006, those lumps came back larger and finally they found out that was cancer (synovial sarcoma). It was too late..... They cut her foot to her ankle and she went back for exam after that they told her that everything was clear (misdiagnosed). In mid 2008, she had diagnosed that it had spread to her left lung. She finally went on chemo in Oct. of 2008.....She is very weak now and they has stopped the chemo after 10 cycles. She was very weak so her chemo cycles was not met the timelines.
    She lives in Vietnam. I am so sad since I could only help her to pay some of the chemo cost and cannot see her because I live too far away. The last couple of days, she is more sick and she doesn't have enough blood count.
    I just read your post and found out that your father has the same problem as my sister. I'm praying that she is not going to leave this life that soon (she is only 43 years old and have a daughter who is only 8). I also hope that your dad is going to get better. :(
    Tammy

    Hi Tammy,
    5 months after
    Hi Tammy,

    5 months after posting, the CT scan show that the tumor in his trunk has grown by 10%. From 10 cm to 11 cm. The tumors in the lungs have grown slightly in size as well, though the numbers remain the same.
    Subsequently, he went through another 5 rounds of Gematabine, Docetaxel and Avastine. After the cycles have completed, the tumors have remained the same size.
    Currently we are contemplating on the idea of resection, but since the tumor has attached the spine, such an operation would cause some immobility. Furthermore there are still tumors in the lungs, even with resection, the disease is still there.
    For now, he is undergoing acupuncture and Chinese medication. Hopefully this will prolong the duration before the tumor starts to grow again. In addition he is also taking abm mushroom extract. This is reported to increase the number of NK, T and B cells that can attack tumors.
    As for your sister, if the chemo has not shrunk the tumors, probably these drugs are not suitable, similar to my father's case. Therefore, stopping treatment early is not too much of an impact.
    I have been checking for new drugs and alternatives. One of the drugs that I came across, and will be consulting the oncologist on the next visit in December is Trabectedin. Lets see how it goes from there.
    From a tumor specialist that we are seeing, his advise is to remove tumors surgically whenever possible.
  • ttamng
    ttamng Member Posts: 10
    #4
    Yee Loon said:

    Hi Tammy,
    5 months after
    Hi Tammy,

    5 months after posting, the CT scan show that the tumor in his trunk has grown by 10%. From 10 cm to 11 cm. The tumors in the lungs have grown slightly in size as well, though the numbers remain the same.
    Subsequently, he went through another 5 rounds of Gematabine, Docetaxel and Avastine. After the cycles have completed, the tumors have remained the same size.
    Currently we are contemplating on the idea of resection, but since the tumor has attached the spine, such an operation would cause some immobility. Furthermore there are still tumors in the lungs, even with resection, the disease is still there.
    For now, he is undergoing acupuncture and Chinese medication. Hopefully this will prolong the duration before the tumor starts to grow again. In addition he is also taking abm mushroom extract. This is reported to increase the number of NK, T and B cells that can attack tumors.
    As for your sister, if the chemo has not shrunk the tumors, probably these drugs are not suitable, similar to my father's case. Therefore, stopping treatment early is not too much of an impact.
    I have been checking for new drugs and alternatives. One of the drugs that I came across, and will be consulting the oncologist on the next visit in December is Trabectedin. Lets see how it goes from there.
    From a tumor specialist that we are seeing, his advise is to remove tumors surgically whenever possible.

    My sister passed away
    She passed away on December 6th. I missed her so much. I don't know what to do, it seems like i lost everything.
    How is your dad doing? Hope he is doing well.

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