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PostPosted: Mon Nov 28, 2005 10:17 am
by patricia margolis

cancer of the nasal cavity and maxillary sinus and orbit

PostPosted: Fri Apr 25, 2008 12:21 pm
by Kairen48
I am new to this forum and I am interested in finding others that have spindle cell sarcoma of the nasal cavity, maxillary sinus and orbit. My husband was diagnosed in January 08 with a worrisome for spindle cell sarcoma. Two additional biopsies continued to be a bit vague and all we are told is this a very rare spindle cell sarcoma. He has undergone 4 rounds of ifosamide and 35 radiation treatments and is scheduled for a cycle of Adriamycin in a few days. The doctors were hoping to shrink the tumor, but as of 3-30-08 the tumor remained the same size. Very radical surgery is planned for some time in June. It will include the total removal of all of the orbital contents.
I am hoping to find others that have been treated for the same cancer in the same areas of the body. I would like to know the procedures used and their outcomes. It will help us determine if we are headed in the right direction or should seek other opinions. He is being treated at UT Southwestern in Dallas, Tx.
Thank you

Maxillary sinus cancer with spread to lymph nodes and lungs

PostPosted: Fri Jun 06, 2008 9:41 pm
by kmassengill
Hi Karen
My son, who is 19, has a similar diagnosis to your husband. His cancer started in his left maxillary sinus and has spread to his lymph nodes and both lungs. He has been through two rounds of adriamycin and ifosfamide. My son says one of the tumors on his neck feels smaller but we wont do a petscan until just before round three on this combination. He has not done any radiation therapy. How did your husband do with his radiation and how has his round with the ifosfamide been? Josh had a terrible time with the ifosfamide and mesna. He ended up with hemorrhagic cystitis which just took time and flushing to get back to normal.
Thanks for your time.


PostPosted: Mon Jun 21, 2010 12:01 am
by schweet
My sister is currently undergoing chemo.radiaiton treatments for sqaumous cell - nasal cavity that has spread mid face and to the skull base, The doctos here in one of the best cancer hospitals in the world here in Houston are saying she needs a "miracle." She came from Australia wheere her doctors back in April were offered palliative care and were going to remover her eye but not offering a cure. Since she has been here she has had all her teeth extracted (they were in bad shape) and has since started treatment but is has spread very fast and they don't think they can cure it. I feel like I bought here and she would have a chance and I am so devastated I don't know what to think. The doctors here are amazed this this has grown so fast... nobody expected this.

Thanks for any advice4


PostPosted: Mon Jul 12, 2010 8:21 am
by sharon

I am visiting my son in Houston right now. If you are at MD Anderson, then I have to assume that they have done a thorough workup and a second pathology check on her tumor. There are surgeons in the US that could do the surgery, close to the brain. I know, because I have had it done for another medical condition that I have. But, if it is spreading aggressively, then they may not feel that the surgery would slow the growth rate. Curative means that all of the tumor can be removed and the growth rate of any residual cancer cells can be totally stopped.

If nothing can be done that is curative, then your sister needs you now more than she has ever needed you in her life. She needs you to hold her hand and give her love and support and reassurance that her children will grow up to be healthy, happy, adults. If you sit back, hold her hand, and listen to her; you will find out exactly what she needs from you right now. But, you cannot do that if you are feeling heavily laden with your own guilt. Let it go. It does not help you or your sister. Love her, hug her, listen to her......


PostPosted: Fri Mar 25, 2011 7:08 pm
by sharon
Patricia posted that in 2005. She is no longer a member of the forums. Not sure what happened to her, sadly.