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Looking for Spindle Cell Sarcoma Survivors

ojdelarosa's picture
ojdelarosa
Posts: 3
Joined: Jun 2012

I see people post about surviving this and about being diagnosed but that's it. 1 or 2 post. The end. I don't know who is alive or what.

 

I'm looking for others still alive.

I going to try to post status monthly for as long as I can.

This is our history:

•My wife was diagnosed with spindile cell sarcoma on 09/25/2010.

 

•22lb abdominal mass removed from liver on 09/23/10 @ Bexar county hospital in San Antinio, Tx by Dr. G. Halff.

 

•Wife recovered, went to MD Anderson but got a bad vibe and went into denial and did not seek further treatment.

 

•3/23/12 new 10 inch tumor found in abdomen.

 

•Removed on 4/17/12

 

• chemo of doxirubicin and experimental IMC-3G3.

 

• Didn't work so went to gemzar and docetaxel on 9/17/12.

 

• tumors removed in Feb. 2013

 

•CT exam to track cancerous nodules on 1/3/14 revealed we were pregnant.

 

•baby born 5/30/14 premiee but healthy.

 

• 06/25/2014 CT shows several tumors have returned. Will start chemo soon.

 

•7/15/2014 Registered for Yondelis (trabectedin) clinical trial.

 

•7/16/2014-7/17/2014 Infusion of yondelis given over 24hrs.

 

• 7/18/2014 Neulasta given.

 

•7/28/2014 Labs drawn.

 

• 7/31/2014 Labs came back. Ok for next round of yondelis.

 

• 8/6/2014 Yondelis given.

 

• 8/8/2014 Neulasta given.

 

• 8/16/2014 Labs drawn, results seem ok/as expected.

 

• 8/18/2014 complaint of leg pain.

 

•8/21/14 Labs drawn.

 

•8/23/2014 Lab results received. CPK @ 1400U/L. Hospitalized at DHR Edinburg, TX for Rhabdomyolysis.

•8/26/2014 @ 1700 hrs  Released from hospital. Ck@326U/L. Pedal edema present.

•9/2/1014 @ 944hrs appointment at CTRC San Antonio, Tx. CT scan taken during DHR hospitalization revealed a 78% reduction in tumors overall. Some have straight up disappeared. To much anemia for chemo treatment to take place today though. Bilirubin level is too high also.

 

Honey216
Posts: 2
Joined: Jun 2014

I'm sorry to hear that she's going back through this again. I was just diagnosed last week with Spindle Cell Sarcoma in my neck. It's maybe the size of a 50 cent piece. I'm not a survivor yet but will be. Plan so far is surgical removal with testing to make sure it hasn't spread then we'll discuss other treatment options.  I've been searching everywhere and havent' been able to find much information on this cancer or the treatment for it. Most of what I come across is more related to animals. I see now this is one of the rare cancers.

Have you been to this web forum?
http://www.rare-cancer.org/forum/index.php

If you haven't hopefully it'll be helpful to you. I'll say a prayer for you and your wife.

ojdelarosa's picture
ojdelarosa
Posts: 3
Joined: Jun 2012

God bless you. I hope they get it all, once and for good. Prayers and best of luck to you! Hang in there.

angelle
Posts: 1
Joined: Aug 2014

I was hoping to find more survivors of this cancer. My mom was diagnosed recently (July 24, 2014) with stage 4 leiomyo sarcoma, large mass in her abdomen. We started chemo Gemzar and taxotere. We got in to see a sarcoma specialist at MD Anderson in houston and they said it is actually a high grade spindle cell sarcoma with mets. I have been trying to find information on this type of cancer or people who have been through this and what worked for them but so far not a lot of information is out there. Thank you for your post and I hope your wife gets better.

ojdelarosa's picture
ojdelarosa
Posts: 3
Joined: Jun 2012

I wish I could find more/other survivors too but it seems that is not our lot. Perhaps we must be the survivors for others to find.

 

Keep the faith! Prayers and best of luck to you and her! Hang in there and be on the lookout for clinical trials that might help you.

 

For my wife and I, our personal experience was that the gemzar mix did work at least enough to shrink/contain it and then they surgically cut it out. The side effects sucked but it did its job. We saw the most dramatic effects on the large tumors. The small ones seemed almost unphased. In our case, it seems that once the tumors grow beyond golf ball size they beguin to get more complex vasculature. It is at that size and larger that we saw the chemo really seems to work on them.

 

Hopefully others will find their way over here to this discussion. When I started his discussion it was just me/my wife's case. As the days passed I was getting discouraged, then Honey216 posted, and now you/your mother's case.

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