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Pleomorphic Spindle Cell Sarcoma

concerned_sister
Posts: 3
Joined: Jul 2010

Hi - I am looking for anyone who has had / or does have pleomorphic spindle cell sarcoma. My 26yo brother was diagnosed with 9cm tumor to the thigh (running thru sciatic nerve) he had radio then surgery. It has metasized to his lungs, chemo at the moment.
Would like to hear other peoples stories. I have been told it is quite rare (around 100 people in the world). Thank you.

jmiller121
Posts: 3
Joined: Feb 2011

I had a 16 cm pleomorphic malignant fibrous histiocytoma in my left hip with metastasis to my lung after 4 months. I am having that small area removed soon. No chemo yet.

concerned_sister
Posts: 3
Joined: Jul 2010

Good luck with your treatment, I truly hope it is successful.

My brothers is inoperable, and chemo isn't working. Another type, another two rounds - then see where we go.

ptompk2
Posts: 1
Joined: Jun 2011

I had a large Pleomorphic Spindle Cell Sarcoma removed from my right rib cage over two years ago followed by two more surgeries and two week-long chemos. It appeared the cancer was finished for almost two years; however, my second anniversary showed a 5mm spot on my right lung. As the spot is too small to initially remove via surgery (doctors don't think it would be easily located if at all at this stage), I am now waiting for an August 2011 report.

Good luck to your brother. I am sorry to hear someone so young is affected. How is he doing?

concerned_sister
Posts: 3
Joined: Jul 2010

I am sorry to report my 27yo brother passed away 30 June 2011. A little under a year from his diagnosis.

His sarcoma proved to have extremely unusual patterns and we found out only last week, it had spread additionally to his heart, liver and trunk (suspected deposits).

I wish you the very best with your treatment ptopmk2. I hope it is successful. Sarcoma is an awful disease but it seems to be luck of the draw as to how aggressive it can be, my brothers metastisised very quickly (matter of weeks) and aggressively (20 tumours in his lungs) so surgery was never an option. Keeping my fingers crossed for you.

All sarcoma patients should try and take place in the Sarcoma Kindred Study. It is running world wide - researchers are trying to gain more information on treatments and patterns of this awful disease as it isn't a "popular" cancer so best treatment method is still resection. Would be nice to have a back up on that one.

Clicrowley97
Posts: 1
Joined: Oct 2014

just diagnosed feeling a bit confused. I would love to know how you are doing?

liz 

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