Retroperitineal Liposarcoma

Hello,

I am a 48 yr. old female that has had retroperitineal liposarcoma twice in the past 7 yrs. I currently do not have any Medical Insurance and am looking for any advice anyone can give me so I can continue my follow ups with the surgeon.

Also, if anyone is familiar with this rare type and can give me any information and encouragement of what I can expect for my future regarding my issues, as I am in constant fear of the return of it.

Thank you so much ~ Kim ~

 

 

Kim,

 

Sorry to hear about your case.

My wife is 50 years old and was diagnosed with Retroperitoneal Sarcoma in April 2008.

Her surgery was aborted as the disease was found in many spots.

We then started the supplements given below. Her tumours were steady for a year, but the scans last week show one tumour growing, while others are all stable.

 

You may want to add these supplements and hope that they work for you.

 My wife ahs just been advised to go on a Phase 2 clinical trial for a drug called BRIVANIB in Sloan Kettering New York. 

 -------------------------------------------------------------------

Curcumin-- 8grams a day divided in 4 doses. Each dose with 5mg Bioperine( Recommended by Sloan Kettering and a friend who is a Cancer researcher.)

 Coriulus Mushroom extract-2 capsules-- I will revert with the name of the company(recommended by the Integrative Medicine dept Sloan Kettering , New york) Just been asked to increase this to 3000mg per day

Green Tea Extract-- 2 caps a day--also by Sloan 

vitamin D3 -100mg a day--by Sloan

HOMEOPATHIC

Graphite 200

Thuja 30

Conium 3

INDIAN AYURVEDIC

I can send from home later if you wish but-you would have to go to India to see the doctors

Happy to stay in touch. We are both fighting for our loved ones.

Thankyou so much for your reply. My recent tumors were resected and am being monitored closely. My 1st surgery was at Sloan Kettering so I feel that your wife is in the best of hands with their care. I will look into the supplements you have listed. My tumors were located in my Psoas muscle in the abdomen on my right side - so a lot of the muscle has been removed and treated with radiation. I haven't met too many people with this type of cancer as it is so rare, but would like to keep in touch to share anything that we can with other. Thank you again for your valuable information and wishing you the very best.  ~ Kim ~

On 7/4/2009 pkclipo wrote:

Kim,

 

Sorry to hear about your case.

My wife is 50 years old and was diagnosed with Retroperitoneal Sarcoma in April 2008.

Her surgery was aborted as the disease was found in many spots.

We then started the supplements given below. Her tumours were steady for a year, but the scans last week show one tumour growing, while others are all stable.

 

You may want to add these supplements and hope that they work for you.

 My wife ahs just been advised to go on a Phase 2 clinical trial for a drug called BRIVANIB in Sloan Kettering New York. 

 -------------------------------------------------------------------

Curcumin-- 8grams a day divided in 4 doses. Each dose with 5mg Bioperine( Recommended by Sloan Kettering and a friend who is a Cancer researcher.)

 Coriulus Mushroom extract-2 capsules-- I will revert with the name of the company(recommended by the Integrative Medicine dept Sloan Kettering , New york) Just been asked to increase this to 3000mg per day

Green Tea Extract-- 2 caps a day--also by Sloan 

vitamin D3 -100mg a day--by Sloan

HOMEOPATHIC

Graphite 200

Thuja 30

Conium 3

INDIAN AYURVEDIC

I can send from home later if you wish but-you would have to go to India to see the doctors

Happy to stay in touch. We are both fighting for our loved ones.

 

Thank you so much for your reply. I

Thanks Kim.

let us stay in touch

My direct email is

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

Dear Kim, Sorry to here about your problem.I am also suffering from Retroperitineal Liposarcoma ,I have had three surgeries during the last 5 years with last one in May 09.All surgeries have been done in India.I visited MD Anderson Houston before my last surgery and they advised me to go in for the third surgery. I am taking Homeopathic medicines and gone on Naturopathy diet with no wheat,sugar or milk products ,and some other variations.I am hoping that the tumour should not return.

 

On 7/12/2009 skidy wrote:

Dear Kim, Sorry to here about your problem.I am also suffering from Retroperitineal Liposarcoma ,I have had three surgeries during the last 5 years with last one in May 09.All surgeries have been done in India.I visited MD Anderson Houston before my last surgery and they advised me to go in for the third surgery. I am taking Homeopathic medicines and gone on Naturopathy diet with no wheat,sugar or milk products ,and some other variations.I am hoping that the tumour should not return.

 

Hello and thank you for your message.  Can you please tell me what Homepathic remedies you are taking and are they successful in treating the tumors and how they are helpful?  I have restricted my diet (on my own) to all that you have listed that you have eliminated in your diet. Do you know what why these are not good for this type of cancer?  My tumors were located in my Psoas muscle in the stomach. Where where yours located?  I am not familiar with this type of cancer and am looking for anything to prevent it from occuring again the 3rd time.  How is India know for surgery for this type? Thank you for you for your time and information.

Dear Kim, Thanks for your prompt reply.I do not know the name of the Homeopathic medicines as in India the medicine is prepared by the office of the doctor after his long consultation where in the profile for personal traits,habits,heredity details etc are analysed .The doctor had advised me not to undergo the last surgery as he was confident of curing the disease in an years time.he was quite upset when I went to him after surgery but has given me the medicines .He is going to see me on 23th along with my wife as she had not accompamied me earlier.At one time only one medicine is given and not a combination. Even the naturopathy Doctor had advised me not to undergo surgery .I will send you the diet plan in the next post . There are some ayurvedic doctors claiming to treat cancer,but one cannot take both medicines together .I got mylast surgery done at Tata Memorial Hospital Mumbai and I found it an excellent hospital . Hoping this information helps you ,and wishing you a better health . RJS Mann

How are your homeopath medicines working? My wife has RPL and is also taking some homeopath medicines

Hi, I'm Sherry and have been diagnosed since Dec 1999 and had my first surgery Jan 2000.  The tumor (right side) was retroperitineal and was in some of the psoas muscle.  It was the size of two grapefruits that went from under my rib cage down and darting to the right leg.  Since the first I have had four other surgeries.  The second surgery in 2004 the psoas muscle was removed and also some of the femoral nerve.  This left me with very painful nerve damage in the right leg.  The third surgery the tumor moved up toward the right kidney this was July 2006.  The previous three surgeries were done at LMC in SC.  This was where I worked in the OR.  The fourth surgery was at Sloan Kettering, NY and once the incision was made and they began they also discovered a second site of cancer.  The first was again right at the right kidney and the second was lower in the pelvis at the aortoiliac bifurcation.  Now I have a fifth recurrence which there are mulitple places...one which goes intra-abdominal (right side) thru the canal and into the right thigh and is just above my knee joint.  There are also five places in the abdomen.  We have been to MD Anderson in Tx.  The news was not good.  The only option we were told was to debulk the tumor which goes into the right leg and this would not remove all of it.  This tumor is growing at a fast rate, it had doubled in size in less than a month.   I would love to talk to anyone who has any dealings with liposarcomas.  My email is:

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

May God bless each one of you & your families.