Spindel Cell Sarcoma...HELP!!!

Koosa44
Koosa44 Member Posts: 3
edited March 2014 in Sarcoma #1
My brother has been diagnosed with Spindle Cell Sarcoma last week. The future looks bleek. He has 3 kids and is the greatest guy. He just finished 3 days of chemo to slow process. Any info, anything..would be appreciated. E-mail at TAS44@aol.com Thank-you!!

Comments

  • cassilly
    cassilly Member Posts: 9
    #2
    Hi. It's time to gather information and educate yourself. The ACS has some info, but not that cancer specific. The NCI, National Cancer Institute is another source. There are sarcoma centers around the country. MD Anderson, Sloan Kettering, and Johns Hopkins to name a few. Sarcomas are rare, and each different pathology or type is treated with a certain regimen. There also are clinical trials which you can look into, you can access them through the NCI website. Hope this helps.Best Wishes.
  • astokes
    astokes Member Posts: 1
    #3
    Dear Koosa44,
    I have been dealing with spindle cell sarcomas for a little over two years. I have had a total of 9 tumors removed from my abdomen. Chemotherapy did not do much for my sarcoma. They are rare and difficult to cure. It all depends on where the tumor is located. Two years ago I was given 3 months to live, but God sent me to a wonderful cancer center, Moffitt Cancer Center in Tammpa Fl, has one of the best Sarcoma specialist in the country. There success rate in dealing with sarcomas is very good. It is very important that your brother see a sarcoma specialist, regular oncologist do not know enough about sarcomas to successfully treat them. My health is good even with my reoccurances. I wouldn't be here today, if my family hadn't insisted that I get a second opinion for treatment. Take time to research the sarcoma specialist at Moffitt Cancer Center. The other places given to you in the other reply are very good also. Please feel free to contact me if you want to talk. My email address is: stokesfamily6@tds.net. I pray that God will bless your brother and heal him. Don't give in, fight!
  • jcthomas
    jcthomas Member Posts: 15
    #4
    Hi. This is a late reply, but I was treated for a sarcoma at U of MD Med Center in Baltimore in '95. The doctor now works at a new cancer center at Sanai Hospital in Baltimore. Do not give up. Read the book Cancer Conqueror. Email me for anything. Anything! J. Thomas - jcthomasjr@yahoo.com
  • pamela55
    pamela55 Member Posts: 7
    #5
    I have retroperitoneal liposarcoma/spindle cell variety. Had 20 lbs tumor removed in April, along with right kidney, overary and fallopian tube. Have to do CT scans every three months, Stage III, but not to distant organs, 65% reoccurrence with 50% survival...different than yours but I'm back to work, though fatigued alot (desk job)...tumor damaged iliac nerve, so there's still numbness in thigh...which is a ****...chemo was out for me cuz organs moved back where they were supposed to be after tumor removal...they left titatium clips in me..."X" marks the spot where cancer will be coming back..a certainty, but it's not gone to my lungs/liver..yet, first CT next month..depends on where you were diagnosed, I went to Mayo Clinic in Rochester, MN, other than John Hopkins, there's none better. Good luck with everything, if you want to share, email me at probedeaux7@hotmail.com glad to listen...it's damned scary, no matter what age you are...
  • pamela55
    pamela55 Member Posts: 7
    #6
    I was diagnosed with retroperitoneal liposarcoma in April. Only sympton (only..ha!) was swollen legs, distended belly, I looked like I was 9 months pregnant. The local quackers put me through every test they 'felt' were necessary, all the expensive ones that is, this went on for some 5 yrs.+. Finally, this April, 2004, my daughter took me to the ER, the only reason I'm alive is that the doctor on call, was NOT on staff. He found a 'large mass' in my abdomen...too big for the locals to handle and sent me (I left in a gown to tell you how fast it went) to Mayo Clinic in Rochester, MN. They had a team of great guys in went through all the options/CT's, etc. On April 14, they told me it was a large tumor, which was remove don April 15th. Turned out it was a 20lbs tumor...how do ya miss that? I had my right kidney, right ovary and fallopian tube removed, mind you they were fine, just entangled in tumor, it's the spindle cell variety. So I lost 3 good organs, a long hospital stay, by today's standards (2 weeks). I went home, one week later, the same pain that originally took me to the ER, was back. Turns out the tumore was so large it ruptured 'stuff' and I had 'man-sized' hernias...all in a row. Back to Rochester, more surgery. I was off work for 3 months, went back (too soon I fear) and will have my first CT next month, 65% reoccurance, 50% survival rate...I have good days, and some bad. If I feel well, I naturally over do it, pay for it the next day...Chemo is out because there aren't too many organs left, as I have 1 lung, 1 kidney, etc. When it comes back, it's going to be radiation...they left two titanium clips at the site of origin...oh and hey, they had to severe nerves in groin most affected and entangled, leaving me with a boatload of numb where there should be happy thoughts and feelings. I'm so frustrated, my poor husband is 'liposarcomed-out'...I sometimes feel like it's the only thing I think/talk about. Most often, I'm positive, but then I realize I almost died (was within 2 weeks of dying in fact)...all because the locals couldn't find a 20lbs tumor...how is that possible? On the upside, which there aren't too many of...I did loose 55lbs and counting...hellish expensive diet....
  • lkern
    lkern Member Posts: 4
    #7
    pamela55 said:

    I was diagnosed with retroperitoneal liposarcoma in April. Only sympton (only..ha!) was swollen legs, distended belly, I looked like I was 9 months pregnant. The local quackers put me through every test they 'felt' were necessary, all the expensive ones that is, this went on for some 5 yrs.+. Finally, this April, 2004, my daughter took me to the ER, the only reason I'm alive is that the doctor on call, was NOT on staff. He found a 'large mass' in my abdomen...too big for the locals to handle and sent me (I left in a gown to tell you how fast it went) to Mayo Clinic in Rochester, MN. They had a team of great guys in went through all the options/CT's, etc. On April 14, they told me it was a large tumor, which was remove don April 15th. Turned out it was a 20lbs tumor...how do ya miss that? I had my right kidney, right ovary and fallopian tube removed, mind you they were fine, just entangled in tumor, it's the spindle cell variety. So I lost 3 good organs, a long hospital stay, by today's standards (2 weeks). I went home, one week later, the same pain that originally took me to the ER, was back. Turns out the tumore was so large it ruptured 'stuff' and I had 'man-sized' hernias...all in a row. Back to Rochester, more surgery. I was off work for 3 months, went back (too soon I fear) and will have my first CT next month, 65% reoccurance, 50% survival rate...I have good days, and some bad. If I feel well, I naturally over do it, pay for it the next day...Chemo is out because there aren't too many organs left, as I have 1 lung, 1 kidney, etc. When it comes back, it's going to be radiation...they left two titanium clips at the site of origin...oh and hey, they had to severe nerves in groin most affected and entangled, leaving me with a boatload of numb where there should be happy thoughts and feelings. I'm so frustrated, my poor husband is 'liposarcomed-out'...I sometimes feel like it's the only thing I think/talk about. Most often, I'm positive, but then I realize I almost died (was within 2 weeks of dying in fact)...all because the locals couldn't find a 20lbs tumor...how is that possible? On the upside, which there aren't too many of...I did loose 55lbs and counting...hellish expensive diet....

    I was diagnosed with retroperitoneal liposarcoma in Jan 05. A general surgeon removed it (left my left kidney). Had funny feeling in my left kidney after the surgery and finally went to a urologist in Nov 05. He didn't like the looks of my kidney so had another CT scan done in March, 06. My tumor was back, so I went to a surgical oncologist who specialized in sarcomas. He removed the tumor, placed a bag of saline in my abdomen to push my insides to the right, tacked up my left kidney so the 34 radiation treatments would kill lower half of kidney as well as the rest of the bad stuff in that area.
    I just had a PET Scan last week and something was seen below the radiated area in my pelvic region. I'll have another MRI and Pet Scan in March, 07 before the Dr. decides just what it is.

    I've been on the internet all day searching nutritional info. I will be making a trip to my health food store tomorrow. I'm going to fight till the end, because right now, I feel great.

    I was sorry to hear about your ordeal...my surgery left no nerve damage. I hope you are doing well..please reply to this post and tell me how you are doing.
    One more question....my oncologist says I'm loaded with 'brown fat'. You are born with it because it keeps you warm as a baby, but you are suppose to outgrow most of it. Apparently, I have not and he thinks there might be a connection. Do you have this problem as well?
  • kwatkins
    kwatkins Member Posts: 3
    #8
    cassilly said:

    Hi. It's time to gather information and educate yourself. The ACS has some info, but not that cancer specific. The NCI, National Cancer Institute is another source. There are sarcoma centers around the country. MD Anderson, Sloan Kettering, and Johns Hopkins to name a few. Sarcomas are rare, and each different pathology or type is treated with a certain regimen. There also are clinical trials which you can look into, you can access them through the NCI website. Hope this helps.Best Wishes.

    Hi, could you tell me some places to go for second opinion? I live in wisconsin and my results came from uw madison Sarcoma center and my dr. in janesville sent my slides to Clevland and now im being told its spindle cell sarcoma unclassified. but before it was lowgrade liposarcoma stage between 1 and 2. I was considering Mayo clinic or chicago but didnt know if they were good? any info would be great. my posting is listed under sarcoma subject age 40 lipo sarcoma. thanks kelly
  • ErnieB3
    ErnieB3 Member Posts: 3
    #9
    kwatkins said:

    Hi, could you tell me some places to go for second opinion? I live in wisconsin and my results came from uw madison Sarcoma center and my dr. in janesville sent my slides to Clevland and now im being told its spindle cell sarcoma unclassified. but before it was lowgrade liposarcoma stage between 1 and 2. I was considering Mayo clinic or chicago but didnt know if they were good? any info would be great. my posting is listed under sarcoma subject age 40 lipo sarcoma. thanks kelly

    Sarcoma
    I had a 7lb tumor removed along with my left kidney and Spleen.
    I am in a trial at Masonic Hospital with Dr. Samir Undevia. You may want to contact Evie Sprague, his nurse. 773-296-8900 They are good. I trust them with my life. Good luck

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