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Soft Tissue Sarcoma in Leg, Starting Chemo

ThuyDoan
Posts: 3
Joined: Sep 2009

I'm 23, female, diagnosed with large aggressive soft tissue sarcoma behind knee/upper calf with bony involvement in tibia. About to start chemo regime of Ifosfamide & Mesna and Adria. If anyone has had similar experience please contact.

sonofsarcoma
Posts: 1
Joined: Oct 2009

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?

ThuyDoan
Posts: 3
Joined: Sep 2009

I had an MRI report, then a biopsy done after having felt a lump behind my knee for a couple months. It's quite large...about the size of a fist.

What can you suggest in terms of diet, day-to-day routine, etc. to get through this?

I've just finished week 1 of chemo and now have two weeks off. The slight nausea is always there but so far it's manageable with medicine. Sometimes just the smell of food is sickening.

If you have any idea I'd like to know what to expect for the upcoming months.

alohamjg
Posts: 1
Joined: Feb 2013

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
Posts: 5
Joined: Nov 2012

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

dabrewsky's picture
dabrewsky
Posts: 4
Joined: Feb 2013

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

t123
Posts: 25
Joined: Feb 2013

Michael, I too have angioscarma- soft tissue cancer. I just had my first chemo treatment. It wentwell. I have a port put in my upper chest. I highlyvrecommend this for chemo. No pain. I was so afraid but it was not bad.. They are trying to shrink the cancer. I had to change my diet - no red meat & a lot of veggies. Her doctors will explain all this. I'll post every weekend to let you know what to expect. They put the iv through the port. It took 2hrs. Bring a book. They added benadryl. I fell a sleep. I eat small meals or I get ill. They give you pills to stop this. Take care

Kimberlyrene
Posts: 1
Joined: Feb 2013

My fiancé was diagnosed with stage 4 synovial sarcoma in October and in that time it has metastasis to both lungs,blood,spine,ribs,and both hips.Nothing,I read on the Internet gives me one ounce of hope.So I just pray and cry every single day.He has already had radiation,chemotherapy,and it continues to spread,so now we are trying a target drug called votrient and hoping for a miracle....

dan06
Posts: 5
Joined: Jan 2009

hi thuydon,
i am 25, female and have also been diagnosed with a type of soft tissue sarcoma in my upper thigh, it's synovial sarcoma. i have already been operated in March this year and had radiatio in summer but now it seems its back and this time there are 4 lumps. I am awaiting surgey again preceded and folowed by chemo and radiation.

how are you feeling/ how did you find out?
My leg is continuously hurting and i feel quite tired and sleepy all the time...how is it with you?
would be gld to hear from you

ThuyDoan
Posts: 3
Joined: Sep 2009

Dan06,
Physically I have been feeling the same way for months. The pain and fatigue never goes away and since starting chemo the fatigue has increased along with nausea.

Emotionally...it's been a whirlwind. It feels bizarre going in for chemo when everyone around me is at least 65 years old. Sometimes it's isolating. A lot of strangers ask why I walk with a crutch. Explaining the whole thing to them is too complicated so I just say it's an injury.

It's been tough coming to terms with things like putting my life on hold for now and not being able to walk normally for a long time. I moved back to my hometown for treatment and being around family and friends really helps. Day to day, I've been taking it easy. Lots of sleep, movies, tv, etc.

I try not to be angry or feel bad for myself. It's life. Somewhere there's a 6-yr old girl going through the same thing or worse and if she can tough it out then we can too.

Jennygirl84
Posts: 5
Joined: Oct 2009

I was 17 when diagnosed with osteosarcoma( grade 3)and was also treated with ifosfamide(as well as doxyrubicin- which was absolutely AWFUL!) It was in my left thigh in the soft tissue and I also recieved 35 days of radiation treatment on top of my chemotherapies. I am 24 now and it's been 7 years since my last treatment and so far, I have a clean bill of health! Where are you being treated?

Ma64
Posts: 15
Joined: Oct 2008

First good luck with treatment. The ACS has great information in the form of booklets that they can send you regarding chemo, radiation, diet etc. I found it to be very helpful.
I am a 46 year old female. I was diagnosed with StageIII soft tissue sarcoma in September 2007. My treatment was a bit different. I had radiation to shrink the tumor before the doctor could operate. Mine was located at my left knee, thigh and calf. It erroded a hole 2/3 of the way thru my femor. I had surgery November 2007. Chemo started in April of 2009 when there was a recurrance. My chemo was Gemzar/Taxotere/Neulasta then switched to Carboplatin/Taxotere/Neulasta.
Good luck with your chemo treatment. Stay positive. You may contact me via email if you like: gsmeyers92@aol.com

AshleyT's picture
AshleyT
Posts: 7
Joined: Aug 2009

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.

lou_lou
Posts: 2
Joined: Oct 2009

Hi, I hope all is going well for you. I have a sarcoma in my left leg and I am having surgery tomorrow(Nov. 11). Not really sure what to expect. Will need radiation after surgery I have been told.
Sounds like you are in a wonderful place. I wish you the best. Respond if you would like to. I will be interested how you are doing. Good luck to you and take care.
Mary

sdmama
Posts: 5
Joined: Nov 2009

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.

alison21
Posts: 6
Joined: Dec 2007

Hi All, I had a sarcoma removed from behind my left knee almost 4 years ago now. I discovered the lump behind my left knee after it was aching from walking. My doctor opted to removed it by a wide excision then ray treatment. Ray treatment lasted about 6 weeks leaving the site very sore,burnt and myself very tired, they told me chemo was not an option as it does not work well on sarcomas. Four years on and my checkups are not getting any easier, I still get very worried and irritated days before the visit, thank god I am surrounded by a wonderful family. To all fighting this inconvenience please stay positive, know your body and surround yourself with great doctors. Goodluck to all

alison21
Posts: 6
Joined: Dec 2007

Hi All, I had a sarcoma removed from behind my left knee almost 4 years ago now. I discovered the lump behind my left knee after it was aching from walking. My doctor opted to removed it by a wide excision then ray treatment. Ray treatment lasted about 6 weeks leaving the site very sore,burnt and myself very tired, they told me chemo was not an option as it does not work well on sarcomas. Four years on and my checkups are not getting any easier, I still get very worried and irritated days before the visit, thank god I am surrounded by a wonderful family. To all fighting this inconvenience please stay positive, know your body and surround yourself with great doctors. Goodluck to all

nanapat6225's picture
nanapat6225
Posts: 3
Joined: Jan 2014

May 2013 I went to the ER withstomach pain and affter Xray an a MRII was diagnoise with a soft tissue of the stomach.

This scarcoma was a very large 20 pounds wich wrap around my colon

and a main vain ran right the middle of it.  I hadit removed and 3 radation treatment it was said to be a low gradebenighn mass Thank God.

Now 1 yr later I have stomach pains again and bloatingThe surgon said it'snot lickly to ruturnbut nevertheless a scarcoma this lage in the stomach is rare

My docaidI must get a colonospoopy whatyour intake on this?Could itome back? or maybe they didn't get it all as they said.

 

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