Retroperitoneal Liposarcoma

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RE: Retroperitoneal Liposarcoma

by raynekt on Wed Mar 15, 2017 09:36 AM

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Thank you and will keep you in by prayers

RE: Retroperitoneal Liposarcoma

by raynekt on Thu Mar 16, 2017 10:11 AM

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Hi Tim, 

Could you share what type your wife was diagnosed with? Was it dedifferentiated?

Thanks, 

RE: Retroperitoneal Liposarcoma

by splamkin on Thu Mar 16, 2017 12:25 PM

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Hello If you're newly diagnosed with liposarvoma the best thing you can do for yourself is get to a major metropolitan hospital that specializes in this type of cancer. There are new protocols in addressing this type of cancer. My husband was treated at MGH in Boston and is going on 5 years cancer free. Susan

RE: Retroperitoneal Liposarcoma

by raynekt on Thu Mar 16, 2017 12:43 PM

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I have an appointment next week with a sarcoma specialist. My liposarcoma is high grade and it's super scary. 

RE: Retroperitoneal Liposarcoma

by splamkin on Thu Mar 16, 2017 01:23 PM

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I agree that it is super scary! Frankly, I did not think at the time we would be at this place today. Godspeed to you on your journey.

RE: Retroperitoneal Liposarcoma

by howell58 on Thu Mar 16, 2017 02:31 PM

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my husband is treated at Sloan Kettering in NY

He is in his tenth year fighting this disease, however, has had 7 surgeries to date to try and control it but it keeps coming back.  He is not on a clinical trial to see if it can stabilize his new tumors.

Please know that with this type of cancer no two people are alike.  What works for one, may not work for the other and so on.

Definitely need to be with a sarcoma specialist in order to try and manage the disease.

Sue

RE: Retroperitoneal Liposarcoma

by Denavek on Thu Mar 16, 2017 02:43 PM

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On Mar 16, 2017 1:23 PM splamkin wrote:

I agree that it is super scary! Frankly, I did not think at the time we would be at this place today. Godspeed to you on your journey.

Hi

All Retroperitoneal Liposarcomas and patients are different. Mine was high and low grade mixed.

Mine was surgically removed and it showed the signs of growth after only 6 months. Sadly at that time we did not believe in any diet or nutrition. After 2 and 1/2 years it had grown very fast about 40% of original size when we started the vegan, Gerson diet etc. that slowed the growth. That is the only reason I have seen seven and half years otherwise I was doomed.

Whenever we have lapsed from the diet and nutrion the growth has accelerated. Therefore diet and nutrition has helped me to stay alive.

God Bless

RE: Retroperitoneal Liposarcoma

by wewillbeatit on Thu Sep 28, 2017 04:23 AM

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My husband had a 34lb retroperitoneal liposarcoma removed in Sept. 2016.  He lost his right kidney, and had to have his vena cava rebuilt because they were ensconsed by the tumor.  We traveled from Chicago to Los Angeles for the surgery, by Dr. William Tseng, at Keck Hospital of USC and are consulting with a doctor of oriental medicine, in Santa Monica, Dr. Nalini Chilkov for help to keep the cancer from recurring, presently a  CT and PET scan has revealed there is a small recurrence, and they will do another CT in one month to see if it has grown. Depending on the outcome he may need more surgery.  The herbs and nutritional guidelines he is following God willing will help keep the cancer from growing anymore. If anyone has any questions, I am happy to answer.  Just hoping that we can keep it at bay by following the strict diet and nutritional guidelines we have been following. 

RE: Retroperitoneal Liposarcoma

by Wifetracy on Sun Dec 03, 2017 07:24 AM

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On Sep 28, 2017 4:23 AM wewillbeatit wrote:

My husband had a 34lb retroperitoneal liposarcoma removed in Sept. 2016.  He lost his right kidney, and had to have his vena cava rebuilt because they were ensconsed by the tumor.  We traveled from Chicago to Los Angeles for the surgery, by Dr. William Tseng, at Keck Hospital of USC and are consulting with a doctor of oriental medicine, in Santa Monica, Dr. Nalini Chilkov for help to keep the cancer from recurring, presently a  CT and PET scan has revealed there is a small recurrence, and they will do another CT in one month to see if it has grown. Depending on the outcome he may need more surgery.  The herbs and nutritional guidelines he is following God willing will help keep the cancer from growing anymore. If anyone has any questions, I am happy to answer.  Just hoping that we can keep it at bay by following the strict diet and nutritional guidelines we have been following. 

My husband is fighting retroperitoneal sarcoma, with his third tumor in less then three years. First tumor was large and high grade and took the kidney. Second tumor was lung. Third was in the brain. Wanting to know survival with this many tumors?

RE: Retroperitoneal Liposarcoma

by howell58 on Sun Dec 03, 2017 01:10 PM

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Wifetracey-

I am so sorry to hear of your husband's diagnosis and challenges.

I have many posts on this site regarding my husband's retroperitoneal liposarcoma.  

He's been fighting 10 years now. Started attached to kidney, and had to lose that.  Here is NJ, they didn't get clear margins. Once pathology determined that it was sarcoma, we were sent to Sloan Kettering in NY

Since diagnosis, he has had 7 surgeries. Recurrences and also metastasis to his lungs.  Lungs were 3 or 4 surgeries if I remember correctly.

He has been told he is one of the lucky ones, whose sarcoma has been able to be managed and controlled, through surgeries and several chemotherapies.  In the ten years, however, the longest he ever went without signs of cancer was one year.  There has always been a recurrence, a metastasis in the lung, or both together, where his team of doctors try different methods to keep it stable.

We know there is no cure for this cancer. There is no chemo that will make it disappear, like many of the common cancers.  It is only a matter of trying to keep it under some control, so it doesn't spread further.

He just went through a chemo combo which actually shrunk the cancer a little bit but only was allowed 8 cycles due to toxicity.  He continued with the one drug alone, and after two cycles it has already grown a bit.

He's doing another two cycles and after the new year will be scanned and most likely have to go onto something else.

It is getting harder and harder, but I have tried to deal with each day as it comes.  Still have my breakdowns, so many things to be frightened of.

No two cases are alike with this cancer. I've read so many scary things. But we pray and pray for more days. Thats all we can do.

My only suggestion is that your husband is with doctors who specialize in this cancer. Thats exactly why we were sent to Sloan Kettering.  

Try to stay strong,

Sue

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