Looking for Spindle Cell Sarcoma Survivors

ojdelarosa
ojdelarosa Member Posts: 3
edited September 2014 in Sarcoma #1

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.

 

Comments

  • Honey216
    Honey216 Member Posts: 3
    #2

    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.

  • angelle
    angelle Member Posts: 1
    #3
    I was hoping to find more

    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
    ojdelarosa Member Posts: 3
    #4
    angelle said:

    I was hoping to find more

    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.

    Us too.

    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.

  • ojdelarosa
    ojdelarosa Member Posts: 3
    #5
    Honey216 said:

    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.

    God bless you.

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

  • Honey216
    Honey216 Member Posts: 3
    #6
    ojdelarosa said:

    Us too.

    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.

    Thanks. I had surgery 2 wks

    Thanks. I had surgery 2 wks ago and they got it all with 98% clean margins. It was High Grade Spindle Cell Sarcoma Stage 1. Thankfully it didn't appear to have begun to spread but to make sure we take care of the last 2% of uncertantity, I'll begin chemo on Dec. 1st. I'll have Gemzar and Docetaxel. No clue what I'm in for but I'm hanging in there. Good luck to you both. I'm still searching for information & other survivors, if I find anything, I"ll post it here to let you guys know.

  • Jessie622
    Jessie622 Member Posts: 7
    #7
    Pheomorphic Spindle Cell Sarcoma Survivor

    Hello

    I know its not easy finding others, especially when the site does't let you know if anyone has responded.  I would be cancer free 2 years on 3/15/15.  Was diagnosis with High Grade Retroperitoneal (Iliopsoas) Sarcoma.  Did 7 rounds of Doxirubin, Ifosfimideand Mesna, then 25 treatments of radation.  6 weeks after that, radical resection of my Iliopsoas and tumor.  Its a miracle I still have a functioning leg.  They wents from talking about a hemipelvectomy to, at best, walking with a brace.  Surgeon went in and the tumor was in the muscle and all nerves were able to be saved.  So I get my 3 month MRI and CT, nothing new.  I always hear reoccurance happens at the 2 year anniversary, so that makes me a little nervous.  My only issue is that my WBC has been really low ever since.  Doctor talks about watching for secondary MDS because of they types of Chemo that I had.  Blood work every 3 months, rides up then down.  Been tried a lot, thinks that has to do with it.  He keeps mentioning a bone marrow biopsy, but not yet.  He's thinking since I started so strong, that my marrow will catch up. 

    Well that my story...diagnosed on 7/16/12 at the ripe age of 41.  Live in Houston, so I have the best care.  Love all my doctors

  • barbaralhancock
    barbaralhancock Member Posts: 2
    #8
    Honey216 said:

    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.

    My son has spindle cell

    Hi Honey 216,

    My son was diagnosed over 4 1/2 years ago.  He is coming up on his 5 year anniversary.  It was a pain in his back, numbing and tingling down his arm, extreme pain all the time. Then a lump in his neck began protruding. Within 6 months and several rounds of chemo and radiation, he had his right arm amputated.  It took two surgeries with Chappie Conrad and Dr. Thomas Mulligan at University of WA Medical Center in Seattle.

    He has since has added another child to his family, and she is our first girl in a family of boys, and it the light of this families life.  She definitely is her father's daughter! 

    We continue to pray for him, to outlast us all.  For this Mom, it kills me to watch him go through this.  

    I wish I had all the information on the drugs he has taken, he is currently going to the U for a 3 day infusion.  It's not 36 hours, it is 3 drips of two drugs.

    They monitor him those hours.  He was on several trial drugs, and they didn't do anything.  His lung tumor grew to about a tennis ball size.

    Thank you for listening.  I will pray for you. What state are you in?

     

  • Rizz
    Rizz Member Posts: 1
    #9
    Honey216 said:

    Thanks. I had surgery 2 wks

    Thanks. I had surgery 2 wks ago and they got it all with 98% clean margins. It was High Grade Spindle Cell Sarcoma Stage 1. Thankfully it didn't appear to have begun to spread but to make sure we take care of the last 2% of uncertantity, I'll begin chemo on Dec. 1st. I'll have Gemzar and Docetaxel. No clue what I'm in for but I'm hanging in there. Good luck to you both. I'm still searching for information & other survivors, if I find anything, I"ll post it here to let you guys know.

    Stage 3 of 3 High Grade Pleomorphic Spindle Cell

    I was diagnoised with High Grade Pleomorphic Spindle Cell Sarcoma stage 3 of 3 back in 2007.  I had two surgery to remove all the tumor along with 2 skin graphs and radiation.  Have been cancer free since.  I currently only have to see the cancer doctor once a year to get a test done.   I had the cancer in my leg, they say if it returns it would go to my lungs so every year they do a chest xray.   

     

    Hope you are doing well. 

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