Retroperitoneal Liposarcoma

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RE: Retroperitoneal Liposarcoma

by mdunn2721 on Sun Nov 21, 2010 02:36 AM

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My husband was diagnosed with RLS today.  Came here to begin to understand what might be ahead for us.  He's been hospitalized for one month now with a chain of events that began with a diabetic wound on his foot.  Two surgeries later (a femoral vascular bypass and a bowel resection to remove an obstruction) and he's feeling pretty beat up.  The mass was spotted in the MRI that was done to find the obstruction of the bowel.  They're saying low grade for now but we haven't met with an oncologist yet as it's Saturday and the results of the biopsy were only presented today by the surgeon performing the bowel resection.  My husband is 63 and diabetic.  Good news is, we're in St Paul MN so the Mayo is nearby.  I'll have questions as this goes along and will appreciate any knowledge and advice you all have already learned through your own journeys. 

RE: Retroperitoneal Liposarcoma

by u30363 on Thu Feb 17, 2011 02:25 PM

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My brother was just diagnosed with RLS yesterday and I was so happy to find your message and those from others to give me any information at all.  How is your husband doing, what treatments have been done, and what should we expect?

My brother had a mass in his ureter 5 years ago that was removed but they did not find cancer.  3 years ago he began getting fibrous tumors in his lungs and last year had a thoracotomy to explore what was going on.  Again no cancer was found and Dr's considered a number of diagnoses such as Churg Strauss Syndrome, IgG4 systemic related disease, Sarcoidosis, etc.  He has deteriorated to where he can hardly breath and has no energy to walk more than across the room.  Finally went to Mayo in Tucson who couldn't make a diagnosis but sent old tissue samples to Rochester, MN who made the RLS diagnosis and said the ureter and lung issues were both RLS and that the RLS had metastecized and is at Stage IV.  Dr's believe it is a  High grade retroperitoneal sarcoma most likely representing dedifferentiated Liposarcoma with subsequent metastasis to the lungs but we have not seen an oncologist.  Dr's are trying to get us into MD Anderson in Houston within 2 weeks. 

I'm looking for a reality check from anyone in terms of what we are realistically looking at and what life may be like in the coming months or years.  I've been through critical illness twice before in my family with leukemia and breast cancer with both requiring bone marrow and/or stem cell transplants at MDA.  Ultimately both lost their battles after about 5 years.  I'm 56 and recently retired and am committed to be at my brothers side but would appreciate anyone's thoughts about what I should prepare for.  All of you are an inspiration and I felt an instant connection when I found the information you have shared.

RE: Retroperitoneal Liposarcoma

by Jlorjack on Wed Dec 21, 2011 06:35 AM

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Hi Leslie, My best friend has well defrentiated retroperitoneal liposarcoma. She s having a very difficult time keeping weight on and is getting very week. Can you tell me the name of the appetite stimulating medicine? Thanks. Lori

RE: Retroperitoneal Liposarcoma

by howell58 on Wed Dec 21, 2011 11:04 AM

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Hello,  just saw your post.  My husband was diagnosed with this disease 4 yrs ago.  First it was misdiagnosed as kidney cancer.  RLS is very rare and most oncologists may see one case in their careers.  That is why we were sent to Sloan Kettering in New York.  We live in Jersey.  Sloan has doctors who specialize in this particular type of cancer.  My husband has had 4 surgeries to date, including 2 metastisis to the lungs.  After his surgery 18 months ago, he was asked to partake in a new study at Sloan, with a new medicine they wante to try with this disease since chemo has no affect and radiation can damage too many inside organs.  He has been cancer free for the last 18 months.   Honestly, I don't think its this new study, I think it is the grace of God that has him still with us.  He is 49 yrs old we have to teenage children and the past 4 yrs have been a complete change of lifestyle. The docs at Sloan do not give you a life expectancy, they only give you some statistics, and prepare you to take things one check up at a tme.  My husband gets scanned every 3 months.  From all the info I have researched, compared to what the docs at Sloan have told us, well differentiated has the better prognosis.  My husbands was mixed with some being d=differentiated which I assume is why there was metatisis.  also told it almost always comes back, but each person is different, some it continues to come back one surgery after the next, some can go several yrs or more without a recurrence.  It is scary because there is no definite course, each person is different, and there is no zapping of leftover cells, etc with chemo.  Surgery is the main management for this disease.  Wishing you all the best and please feel free to contact me with any questions. God Bless. 

Sue

RE: Retroperitoneal Liposarcoma

by u30363 on Wed Dec 21, 2011 01:39 PM

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Thanks for your post.  Am very happy that you are seeing some positive results.  We went to both Mayo Clinic and MD Anderson and were told that there was nothing they could do due to metastasis in multiple places from spine to lungs, legs and brain.  We are currently in the final stages with his having become bedfast in the past 2 weeks.  We are focusing on comfort and have lots of family around caring for him in shifts.  His is the dedifferentiated type.  Thanks for taking the time to respond and we wish you and your family the very best.

Bill

RE: Retroperitoneal Liposarcoma

by howell58 on Wed Dec 21, 2011 03:01 PM

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Bill, may God give you strength, I will keep you both in my prayers.

Sue

RE: Retroperitoneal Liposarcoma

by Jlorjack on Tue Jan 03, 2012 04:21 AM

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Hi Sue, Was the study that your husband participated in a combination of palifosfamide and andriamycin? My best friend is preparing to participate in a clinical trial in Wisconsin. I'm concerned because she has already lost so much weight from surgery and radiation. Would like information on this chemotherapy combination.

RE: Retroperitoneal Liposarcoma

by Jlorjack on Tue Jan 03, 2012 04:28 AM

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Is anyone familiar with the current clinical trial for RLS combining Palifosfamide and Andriamycin (aka Doxorubicin, Rubex). My friend is preparing to enter. Clinical trial in January. I would love some feedback and outcome information. Lori

RE: Retroperitoneal Liposarcoma

by howell58 on Tue Jan 03, 2012 11:45 AM

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No this is not a chemotherapy treatment.  Chemo does not have any affect on this type of cancer.  I don't remember the names of the medicines involved but this combination was very successful in with breat cancer and I believe uterine cancer treatments.   It is a series of injections that he gets over the course of a 3 yr period, the longer you make it cancer free, the interims between shots gets longer.  Quite frankly, I do not know that it is working with my husband, I tend to believe it is by the grace of God that he has been healthy over the past 18 months.  You may wish to go onto the Memorial Sloan Kettering website, they are very informative as I have done so much research on my own to prepare myself for this journey.

Sue

RE: Retroperitoneal Liposarcoma

by faranak on Thu Feb 02, 2012 01:53 PM

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Hi Roe

My father has a retropritoneal liposarcoma which diagnozed well-differentiated and removed out(with remaining surgical marigines after surgery) near a year ago,we did PET/CT and IMRT,then a recurrence of tomour( convert to dedifferentiated grade 3)occured which made us to do the surgery for the second time to go on chemotherapy based on doxorubicin and ifosfamide,He received four cycle chemotherapy but there is still a tomour size of 10x7cm,there was a reduction in size of tomour after first cycle but no significant reduction after the other 2 cycles.

can you recommend us what should we do next?if you have the similar case in point?

thanks in advance 

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