Liposarcoma In The Abdomen

My wife has had a re-occurrence of liposarcoma in the abdomen. I am looking for persons that have had of loved one have had this rare cancer and what was the treatment. Her treament both times has been surgery. This second time the tumor is more aggressive and some small starts of future tumors had to be left in or the entire small intestine would be removed, which as I understand cannot. Has anyone have information on using chemo or radiation on the remaining small tumor starts? She is battling the second surgery at this time and has a bloated abdomen and is waiting to pass sometning through her intestines.

Hi: my name is dolores. I have been fighting liposarcomas since 1999. I have just had my 5th surgery for this in april of this year. The first surgery, i had three liposarcomas removed on the left kidney and surrounding areas. The second surgery was 1 1/2 years later where 3 large and 2 smaller lipomas were removed again in the same area. Then, again the following march had another surgery where 5 large lipomas were removed. At this time, an oncologist suggested to try a pill, named thalidomide and to also have chemotherapy, but advised me that the chemotherapy was not very successful for these tumors. Two months into the chemotherapy, a cat scan revealed 2 larger tumors sitting right at the same place. Chemo was stopped and i was suggested to find a surgeon that did only oncology surgery and to see numerous doctors concerning this. These tumors are suppose to be slow growing, but not mine. I was scheduled for surgery at another hospital. There in july of 2004, i had the left kidney removed, where a tumor was always attached, the spleen was removed as well as partial tail of the pancreas, removing all the left side of my diaphgram and resecting my colon. Always, these liposarcomas were encapsulated. Then, a cat scan was taken and showed again 2 large tumors. I was then set up for surgery in april of 2005, with intraoperative radiation at the same time the tumors were removed to try to kill extra cells not seen at time of the surgery. Every surgery weakened me, but i fought it and made it through that one. I then after returning home had home health to help me and started radiation 5 days a week for 28 series. I am scheduled for a cat scan this month on the 20th to see what is happening since my last surgery and radiation. My abdomen is so swollen, i look pregnant. I never had a large abdomen, but if i have to have this, and i can still be alive, i'll take it.
I hope that your wife is a fighter and that she has faith. It takes a lot out of a person. That is the only way i'm making it. I have all my joints in my body that hurt severly and it is hard for me to get up from a sitting position and to get started in walking. This, i was told from a nurse could have come from chemo. Take care have strength and faith and it will get you through this. Good luck --dolores in louisiana

Hi Dolores C. You have been through a lot. Hope you continue to improve. Your strength and spirit are good. I have lost my wife to her Liposarcoma tumor. After the re-occurrence surgery which put her on the edge of making it through, she did well and got out of the hospital in 21 days. She was told that the tumor would return and no radiation would work and maybe chemo. We searched for clinical trials and sought other opinions from Stanford and UCLA. Even places accross the country like MD Anderson. She had a good 2 months and the tumor returned with full aggression. She was home under Hospice care when she passed away. Her pelvic liposarcoma had matastisized over her small intestines and was not encapsulated. I'm glad I had the time with her, but had hoped for more.
Thank you for responding and keep up the fight.

Dear Alex9: Sorry to hear about your loss. I have not been on my computer due to hurricanes. I am so sorry to hear about you losing your wife so fast. Yes, we are thankful for each day we are with our loved ones. She was very dear to you as you talk about her. I have had another scan of which I wrote to you and the results were o.k. But, I still have the swelling of my abdomen. My doctor wasn't there to see me, due to the hurricane because he had evacuated. I was called by his nurse who gave me results of the CAT Scan and she told me that in 3 months I would be seeing the Dr. which is December. I feel I want to do a lot of things around the house, along with gardening, but my body won't let me do them. I tire easily. Riding in a car is the worse for me. If you have anything else you care to share with me about your late wife, I will check to see if I have anymore e-mails from you. Take care and my prayers are with you for each day you wake up alone. This is a rough road for you right now. Good Luck to you and God Bless. Dolores in La.

Dolores, Thank you for your prayers and kind thoughts. I am still in shock about what happened. I keep going over the last 3 months while we were seeking care. I attend a Cancer Support Group and also Bereavement counseling. These meetings are helping me cope with my new life. I have a hard time talking about my wife with others and especially her friends. I had a Celebration of Life for her in October and it was well attended and hopefully closure for many of her friends and students. It was hard for me to put together the Celebration, but I was determined to honor her life. I had friends help with the Tribute.

I have also attended nutrition classes for people with cancer and are either in treatment or are survivors. It has given me a focus to continue to take care of myself and food ideas to live healthy.

I understand the tiredness and the difficulty with riding in a car. Both symtoms experienced by my wife.
Take care and continue to remain positive.
Alex in CA

 

On 11/4/2005 Dolores wrote:

Dear Alex9: Sorry to hear about your loss. I have not been on my computer due to hurricanes. I am so sorry to hear about you losing your wife so fast. Yes, we are thankful for each day we are with our loved ones. She was very dear to you as you talk about her. I have had another scan of which I wrote to you and the results were o.k. But, I still have the swelling of my abdomen. My doctor wasn't there to see me, due to the hurricane because he had evacuated. I was called by his nurse who gave me results of the CAT Scan and she told me that in 3 months I would be seeing the Dr. which is December. I feel I want to do a lot of things around the house, along with gardening, but my body won't let me do them. I tire easily. Riding in a car is the worse for me. If you have anything else you care to share with me about your late wife, I will check to see if I have anymore e-mails from you. Take care and my prayers are with you for each day you wake up alone. This is a rough road for you right now. Good Luck to you and God Bless. Dolores in La.

My name is David,

How are you doing? 

 I am about to have my 3rd surgery.

Do you know anything about Proton surgery? 

 

 

On 5/15/2005 Alexd9 wrote:

My wife has had a re-occurrence of liposarcoma in the abdomen. I am looking for persons that have had of loved one have had this rare cancer and what was the treatment. Her treament both times has been surgery. This second time the tumor is more aggressive and some small starts of future tumors had to be left in or the entire small intestine would be removed, which as I understand cannot. Has anyone have information on using chemo or radiation on the remaining small tumor starts? She is battling the second surgery at this time and has a bloated abdomen and is waiting to pass sometning through her intestines.

 

Dear Alex,

My husband has been dealing with this complex type of cancer for over 12 years.  In 1995, we thought he was developing a bodacious beer belly. It turned out to  be a 14 lb tumor that had invaded his right kidney and pushed his intestines forward. That was the beginning of a long struggle trying to learn as much about this type of cancer as we could. The local doctors were anxious to radiate the resected area, but fortunately , we have enough doctors in the family who advised against radiation. The long and short of it is that Tom has survived three cancer surgeries and will soon have to endure another. We are now getting treatment at MD Anderson since the Omaha doctors didn't think they could do any more for him. He presently has 2 tumors lodged near his pancreas, but they are growing very slowly and he still is able to maintain a quality life.

 My advice for your wonderful mother? I would avoid radiation at all costs. Many of the experts I consulted were worried about the after effects of radiation on the small and large intestines...that the burning of the tissues could warrant another resection in years to come. Since Lyposarcomas are slow growing tumors, why not carefully monitor the advancement of the tumors before any surgery has to happen?

My prayers and good wishes are with you-

 

Delaney Tarsney