Soft Tissue Sarcoma in Leg, Starting Chemo

AshleyT said:

Soft Tissue Sarcoma on Back, Doing Radiation
I am 43. I am a registered nurse with some oncology experience. I have a soft tissue sarcoma on my back between my scapula and armpit. I am undergoing 5 weeks of radiation then I will have surgery. Chemo is still on the table but the specialists have not made a decision yet. I live in Mobile, Alabama. I am recieving treatment at MD Anderson. Their survival rate for sarcoma is 80%. Much better than average. I am fortunate to have the resources and insurance to be here. It is a financial strain though to support two households and to lose my income. My husband looks ten years older. It is also an emotional strain too being so far from home, family and friends. I also have a great workplace that is holding my position for me for as long as it takes. Radiation is NOT bad. I am slightly red and irritated and a little fatigued but otherwise ok. I will have Mesna, Adriamycin, Ifosfamide and Doxorubicin (MAID) if I have to have chemo. I have heard it is brutal and you have to be admitted for several days to have it infused. I wish you the best of luck. I would love to have someone to talk to that is going through something similar. I am on Facebook daily. Ashley Talbot, Mobile, Ala. How are you doing now. Would love to hear from you.

sdmama said:

Lou_lou,
Hope your surgery
Lou_lou,
Hope your surgery went well. I had a tumor removed in my right leg last month. Recovery was difficult because I didn't realize my mobility would be so affected. But, now, I am able to walk without a walker or cane and am going to be starting outpatient physical therapy. It is crazy how rare sarcomas are. I hope that you are well.

sonofsarcoma said:

Stay Strong
I am 28 and my mother has soft tissue sacrcoma that originated in her thigh and then became bony. They did not start her on Ifosfamide at first. I can tell you that Ifosfamide is intense. I will pray for you. If you have any questions, let me know. Diet plays a big part in helping treatment and fighting the cancer.

How did you detect it? How big is the mass?

Hi I'm writing in regards for my wife Jennifer. she has been diagnose with a rare and agressive soft tissue sarcoma in her upper thigh left leg. The test came back that it can't be operated or even amputated because where this cancer lies connected to the limp nodes, femur and other vital connection. Sorry if I didn't use the right vocabulary or words. Anyways she is schedule for a first round chemo next week for 6 days and home for 3 weeks and see if the chemo has made a change. What should I expect as her husband I have 3 daughter under the age of 11years old. We have a good amount of support group. Please advise...

Michael

patriar said:

Stay Strong Sarcoma

Hello Michael,

I just read your post.  I also am currently being treated for a rare and aggressive sarcoma called Leiomyosarcoma of the upper left thigh.  I had my first round of chemo Doxorubicin, Ifosfamide, and Mesna in August of 2012 then again 21 days later.  On October 2, 2012 I had a very large (15x8x6 cm) tumor removed from my thigh along with one and a half of my quadrant muscles, and damages soft tissue.  Fortunately pathology returned negative margins.  Then I started 32 days of radiation in November - finishing just in time for Christmas on December 22, 2012.  I had extreme reactions to radiation because the radiated area was so large.  I feel truly fortunate to have had 6 weeks "off" - no treatment.  I am going back in the hospital this coming Tuesday, February 12, 2013 for the 3rd of what we hope will be 4 cycles of chemotherapy.

I stronly recommend that you get another opinion, and even a 3rd and 4th.  I'm not sure where you're located, but my Orthopedic Oncologist is Dr. Philip Krueger of St. Mary's Hospital in San Francisco, CA and Dr. Kenneth Yamamoto is my Oncologist, also in San Francisco, and Dr. Meilen Wu is my Radiation Oncologist also at St. Mary's in San Francisco.  I pray that that tumor CAN be removed from her!

Stay strong and supportive of her needs.  My husband's support meant the world to me!  While he planned to take time off work to care for me, I urged him to continue working - as that brought me peace. Not peace with him not being with me, but in knowing that he was staying productive and continuing his own identity.  I didn't want him to become a full time care giver.  I was also very fortunate to have a good support team and learned to call on them to sit with me, clean the house, handle pets, handle insurance business, etc.  Match your support members skills to areas that they can assist in your every day life - including child care/assistance.  I have never asked for help, but you better believe that I did now, and my support team was so happy to do whatever they could in anyway.  I also am going to go there and hope that I don't offend you, but research medicinal marijuana then consider it for your wife - if it's legal in your State.  I've never indulged in marijuana and never believed in the whole Prop 420 movement until going through chemo.  I will tell you that through this experience, I'm convinced of its' benefit with regards to increasing appetite and food intake, which helped me maintain my strength.  Think about that nauseous feeling that you get when you go several hours without eating coupled with the nausea from the chemicals.  Once on chemo and you get to that point, there's a brain signal that is triggered and there's almost no going back - the medicinal marijuana curbed about 95% of that "gross" and "yucky" nausea and aided in maintaing minimal weight loss.  The synthetic stuff is not the same, I tried it and it was way too strong and made me ill.  Not to mention, that at this point, I want to minimize what I'm putting through my liver.  I and her physician's would recommend investing in a good quality vaporizer rather than smoking it for fear of intaking carcinogens.  Encourage her to eat!  Food will taste bitter or like nothing most of the time, but small amounts of cottage cheese, soups/broths, scrambled eggs, cheese slices, otter pops should be tolerable then periodically when she craves that favorite food of hers; be it Taco Bell, Hot Dogs, etc. have someone get it for her and let her give it a shot.  As horrible as it will taste, she will need the nutrients to feel better and stronger.

Michael, my heart goes out to your wife, you, and your entire family.  This is a journey that no one can imagine until they go through it.  I'm sorry that your wife is faced with this journey, but she is not alone!  I fighting with her, for her, and for all our other sisters and brothers who face this same journey.  May she be continually blessed!

Alway,

Patria "Patty" Ramirez

very informative, inspiring story, thank you Patria "Patty" Ramirez

alohamjg said:

Stay Strong 2

Hi I'm writing in regards for my wife Jennifer. she has been diagnose with a rare and agressive soft tissue sarcoma in her upper thigh left leg. The test came back that it can't be operated or even amputated because where this cancer lies connected to the limp nodes, femur and other vital connection. Sorry if I didn't use the right vocabulary or words. Anyways she is schedule for a first round chemo next week for 6 days and home for 3 weeks and see if the chemo has made a change. What should I expect as her husband I have 3 daughter under the age of 11years old. We have a good amount of support group. Please advise...

 

Michael