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Thread: Anyone else been diagnosed with Clear Cell Sarcoma?

  1. #1
    Newbie New User
    Join Date
    Jun 2011

    Anyone else been diagnosed with Clear Cell Sarcoma?

    Greetings to everyone. I am the spouse of a clear cell sarcoma patient. This is my first post so I will briefly explain his journey. Fifteen years ago - aplastic anemia at 31 years old, treated with full body radiation, four days of intense chemo, and then bone marrow transplant. Full recovery. Fast forward to November of 2008. He had been complaining of severe stomach cramping, misdiagnosed as irritable bowel. Finally, it got so bad that I took him to ER, where docs did CT scan and found blockage in small intestine. A small (acorn-sized) tumor was removed along with several inches of intestine, sent to Mayo, and came back as a clear cell sarcoma. Referred to local oncologist who ran periodic CT scans to check for recurrence. March of 2010, it was back with a vengeance. Went in to surgery in May, and surgeon delivered the news that he absolutely could not and would not remove it. Too large and at the root of the mesentery. Consulted with a sarcoma specialist in Indy who recommended 5 - 6 rounds of chemo, which amazingly shrunk it by 50%, even though the literature seems to suggest otherwise. Local oncologist amazed with results. He had the softball sized tumor and two feet of his small intestine removed on December 21, 2010, and began his long recovery. Unfortunately, small blood vessels cut during surgery caused another (non cancer related) blockage in another part of his small intestines, and he had to go back to IU for another bowel resection. After another CT scan during that hospitalization, it was revealed that the sarcoma was back, lining the outside walls of his small intestines and in several places in his liver. He has already gone through one round of cisplatin and adramyacin but had problems involving his kidneys and had to be hospitalized for a week. (Memorial Day week) We consulted specialist yesterday, and he recommended just the adriamycin for the second round, which he will be starting next Monday. Now, as bleak as all of this sounds, he is still working part-time and staying fairly active in the garden. Specialist at IU and local oncologist are both impressed with his quality of life and his relative strength, considering his extreme weight loss. I don't know what our future holds but would love to correspond with others with this same tumor type. We feel quite alone in this matter since it's so rare and really need some guidance/companionship. Thanks to all and hope to hear from someone.

  2. #2
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Hi Shar8 and I am sorry that you and your husband are feeling so alone in fighting this disease. I don't have any idea how many folks on this forum are facing sarcoma so would encourage you to hang around, post again and see what happens. We will do our best to provide support to you as you fight this fight.

    You are probably already aware of it but, if not, there is a patient resource center at the Sarcoma Foundation site. You can find it here: http://www.curesarcoma.org/index.php...atient_support

    Please do keep us posted and I will be sending good thoughts your way.

    Good health,

    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
    Newbie New User
    Join Date
    Sep 2011
    Hello Shar8 -

    I am new to the forum as well looking to better understand cancer and the different treatments for each. The Sarcoma website that Kermica recommended has a wealth of information. I read that with sarcomas, chemotherapy, may not be the most effective course of treatment. Have you looked into an alternative cancer treatment. I know with Chondrosarcoma they use a proton therapy treatment. 1 of 9 hospitals that specialize in this treatment is located in Indianapolis.
    Last edited by Stefan S; 09-13-2011 at 11:13 PM.

  4. #4
    Top User pbj11's Avatar
    Join Date
    May 2007
    We meet again! LOL I wanted to point out that this is a little older thread and might not be seen by the original poster.

    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  5. #5
    Newbie New User
    Join Date
    Feb 2012
    Hi, I just found this site, which was forwarded to me by my Dad. What State do you live in? I am in Idaho. I was diagnosed with clear cell sarcoma of the small intestine. 5" tumaor removed from wall of small intestine in May 2009. Cat scans and x-rays every 3-4 mths. Skipped an appointment in Oct. 2010 because I couldn't afford to go to Houston, MD Anderson. Transferred care to local Oncologist Doc in Idaho. Scans on 1/3/2012 showed return of 7 masses. Biopsied and confirmed same clear cell sarcoma, metastisized to stage 4. Docs gave me chemo treatment option last week, with chances of it working maybe 15-205, life expectancy less then one year. Pretty overwhelming. Do you mind me asking what type of chemo you used that reduced the tumaor 50%? I'm feeling darn alone in all this as well. Supportive family and friends, but no one who is fighting the same battle with the same cancer. I really hope you reply. Thanks...

  6. #6
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Hello. I am so sorry that you facing these challenges. I don't know if this OP will return here as they only did 2 posts in June last year as pbj has already mentioned.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  7. #7
    Newbie New User
    Join Date
    Sep 2012
    hi shar82 my name is jason i have just hade a blockage removed from my small intestines which turned out to be clear cell sarcoma. dont no much about this and after reading up on it,it has me a bit worried.how is your husband going, and any advice thanks

  8. #8
    Newbie New User
    Join Date
    Mar 2013
    Jason, Are you still out there? I am a eight year survivor of Clear Cell Sarcoma. Darryl

  9. #9
    Newbie New User
    Join Date
    Nov 2019
    Hello! I am from Russia.

    I had a tumor in my right palm for 6 years. It was small and didn't bother me. But it began to grow this summer.
    As a result: 2 centimeters, with sections of necrosis, clear cell sarcoma. PET CT scan without pathology.
    Medical history: without bad habits, flour and sweet restricted, weight 55 kilograms, height 170, there is a violation of glucose tolerance (maybe MODY diabetes), gave birth to strong children. Oncology relatives have no.


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