Fibrosarcoma

sandysarcoma

Is there anyone out there with my cancer...fibrosarcoma? I have never met another person with fibrosarcoma..if you are out there, what is your story, and how are you?

JoeyMN

yes i have it. currently
yes i have it. currently going through treatments again after being clean for one year. its in my lungs now. i dont think its going to end like i would like, but i am keeping the faith.

sdmama

JoeyMN said:

yes i have it. currently
yes i have it. currently going through treatments again after being clean for one year. its in my lungs now. i dont think its going to end like i would like, but i am keeping the faith.

Just diagnosed
I'm sorry that your fibrosarcoma is back, JoeyMN. I was diagnosed in September. I had surgery in October and am going to start radiation next week. What treatment are you doing?

Chez

sdmama said:

Just diagnosed
I'm sorry that your fibrosarcoma is back, JoeyMN. I was diagnosed in September. I had surgery in October and am going to start radiation next week. What treatment are you doing?

Fibrosarcoma
Hi sdmama
Like you I had surgery on my arm last October and start Radiation therapy next week. They are having trouble trying to position me as the tumour was so close to my elbow. I have had to go to the cancer centre twice for position, CT scans and tattooing. I will be thinking of you and praying that all goes well. I live in Australia.I guess we are all ovr the world.

Chez

Fibrosarcoma on arm
Hi Sandysarcoma
I have it too. I believe we are the rare ones. I read on the internet that sarcomas are 1% of cancers. I guess we are special. Good luck with your journey and I hope for a full recovery for you. My story is now online

Chez

JoeyMN said:

yes i have it. currently
yes i have it. currently going through treatments again after being clean for one year. its in my lungs now. i dont think its going to end like i would like, but i am keeping the faith.

So Sorry
Hi JoeyMN

So sorry to hear your news. Stay peaceful and I see you're keeping the faith. Good Luck and I will add you to my list of people to prayer for.

momanddaughter2009

Fibrosarcoma
Good Evening,

My daughter 16 years old has fibrosarcoma of the brain. We found the tumor on her 16th bday and she had it removed on the 4th (her brothers bday) and we found out it was cancer on the 15th (my mom's bday). We started radiation on June 16 and still didn't know what kind it was for sure. After two pathologists it was fibrosarcoma. It is really rare to have it in the brain and not anywhere else. We ended the treatment July 31st. We just went on the 16th of November and found out that the MRI was clear. Now we have to go back and have it again in 3 months. Her's was a grade 3. She is doing great now. She does have short memory loss and sub clinical seizures now. However, she is playing volleyball and softball and living life as normal as possible. We just pray that the reports stay this way. Don't think negative always have a positivie outlook, it really works and helps you and the people around you. If you try to get up beat so will the people around you. I hope this helps you.

Chez

sdmama said:

Just diagnosed
I'm sorry that your fibrosarcoma is back, JoeyMN. I was diagnosed in September. I had surgery in October and am going to start radiation next week. What treatment are you doing?

treatment for fibrosarcoma
Hi sdmama
I seem to be doing the same as you. I had a fibrosarcoma removed from my arm in October. I am into my third week radiation.. How are you going?

momanddaughter2009

fibrosarcoma
Hi, I am in the boat as you. My daughter has brain fibrosarcoma and she is 16 years old. Normally it will metatize to the brain, but her's didn't. There is not cancer anywhere else. I too would like to find more people so I know what our future might hold.
What kind of fibrosarcoma do you have?

momanddaughter2009

fibrosarcoma
Hi, I am in the boat as you. My daughter has brain fibrosarcoma and she is 16 years old. Normally it will metatize to the brain, but her's didn't. There is not cancer anywhere else. I too would like to find more people so I know what our future might hold.
What kind of fibrosarcoma do you have?

sdmama

Chez said:

treatment for fibrosarcoma
Hi sdmama
I seem to be doing the same as you. I had a fibrosarcoma removed from my arm in October. I am into my third week radiation.. How are you going?

Finished Radiation
Chez,
I have just finished radiation and am now waiting for my first CT scan in the hopes that my surgery and treatment were effective. I am praying they have been. My muscle was very sore and tired during radiation, but in the last few days, it already seems to be bouncing back. My skin is very burned, but I know that will correct itself soon. Hope you are well!

Chez

sdmama said:

Finished Radiation
Chez,
I have just finished radiation and am now waiting for my first CT scan in the hopes that my surgery and treatment were effective. I am praying they have been. My muscle was very sore and tired during radiation, but in the last few days, it already seems to be bouncing back. My skin is very burned, but I know that will correct itself soon. Hope you are well!

Finished Radiation
Hi sdmama
I finish radiation today 21/10/2010. We did find a solid lesion in my thyroid but it turns out not to be a concern and so IO am finished today. I am to see my surgeon in 3 months and have CT Scans every 6 months. I managed radiation well. I am a retired nurse and was nursing for over 40 years. I was able to watch my own redness of the azrm. One thing I did was at night I caked on the sorbalene and bandaged my arm so that the skin would be able to absorb the cream and not have it on the sheets. Doctor mentioned my skin was very good considering the treatment. there was concern that my elbow would stiffen, so I went to the Gym with my husband and when they did weight lifting exercises, I just moved my arm to the same exercises without the weights and I am able to move my arm normally now. I did get tired and sleepy but Christmas activities kept me from being self absorbed and the time went fairly quickly. My skin did get somewhat very red on a couple of occasions but I just slopped on the cream every time it felt tight and definitely more than twice a day. I am doing well and hope all our other friends are too. Would love to keep in touch to see how you go in the future. My sarcoma was on my left arm very near the elbow. Do you mind telling me where yours was. So far....We're WINNERS... God Bless and keep up our prayers for all the others on this site. ..Regards
Cheryl in Australia

Chez

momanddaughter2009 said:

Fibrosarcoma
Good Evening,

My daughter 16 years old has fibrosarcoma of the brain. We found the tumor on her 16th bday and she had it removed on the 4th (her brothers bday) and we found out it was cancer on the 15th (my mom's bday). We started radiation on June 16 and still didn't know what kind it was for sure. After two pathologists it was fibrosarcoma. It is really rare to have it in the brain and not anywhere else. We ended the treatment July 31st. We just went on the 16th of November and found out that the MRI was clear. Now we have to go back and have it again in 3 months. Her's was a grade 3. She is doing great now. She does have short memory loss and sub clinical seizures now. However, she is playing volleyball and softball and living life as normal as possible. We just pray that the reports stay this way. Don't think negative always have a positivie outlook, it really works and helps you and the people around you. If you try to get up beat so will the people around you. I hope this helps you.

Finished radiation
Hi
My prayers are with you. I adore teenagers and so sorry that your daughter has had to face this monster in her early life. I am so glad she is doing as well as she is. I agree with your staying positive. My grandchildren call me the Party Animal and we have as much fun as we can often with family and friends. Laughter really helps the healing process. I called myself Feral Cheryl at the Cancer Centre. I joked with everyone around (as well as listened quietly to the other patients when we were able to talk one on one), and the Radiation Therapist said that I was the happiest patient they have ever had and not to change. After all, these lovely young angels are doing their best to help us.I always dressed up to go for treatment and one therapist had to ask me if I dressed liked this at home or did I do it for them. I laughed and said I was a slob at home. Nursing taught me to be a great actress and I like to keep everyone's spirits up as I notice you do too. God bless you and keep up the good work with your daughter.

Chez

JoeyMN said:

yes i have it. currently
yes i have it. currently going through treatments again after being clean for one year. its in my lungs now. i dont think its going to end like i would like, but i am keeping the faith.

Thinking of you
Hi JoeyMN
How are you going?? My prayers and thoughts are with you. I am hoping that the medical team has come up with the treatment that will beat this for you.

Chez

Making contact with sandysarcoma
Hi sandysarcoma
I see not further comments from you. How are you managing this cancer?? Hope you are well.

bron

fibrosarcoma
hi to everyone going through this terrible time, I was diagnosed with fibrosarcoma in2000, it was in my jaw and cheek. After radical surgery I am now clear of the horrible disease, you can beat this -- all the best. bron in Aus

RoseDodge

Malignant Fibrous Sarcoma
Diagnosed 2008 Malignant Fibrous Sarcoma in my leg bone. Had surgery took out bone and replaced with endo prosthesis (prosthesis within my leg), from knee down to ankle. Had very strong chemo for 11mths. Cancer came back in lungs within 6mths. March 2009 was given 6mths to live, Drs could do nothing more for me. Now March 2010 and still well, not 100% but I dont miss out on much. To look at me you would think I was normal, I look really well and most of the time feel well.

I put my well being down to diet, small things like NO sugar and lots of antioxidant foods.
Australia

Freiteez

I had it at age 10
In the 5th grade I developed a lump under my right shoulder. The doctor said we had to take it out and we found out it was fibrosarcoma. I went to childrens hospital and they did another surgery to take out cells in the area and a bone marrow test. For years they dis MRI tests, cat scans, blood tests and bone scans. My church all prayed for me and the people at childrens hospital told us that they found no more signs of the cancer. I have been doing great ever since. It was a big part of my life that I will never forget. I might have been the youngest with fibrosarcoma and survived it...but I know this was a miracle and I don't take this for granted. I just wanted to share my story. I summarized it as best I can. Sounds like something simple but going to the doctors and everything was about 4-5 years of my life

FibroSarcomaUT

RoseDodge said:

Malignant Fibrous Sarcoma
Diagnosed 2008 Malignant Fibrous Sarcoma in my leg bone. Had surgery took out bone and replaced with endo prosthesis (prosthesis within my leg), from knee down to ankle. Had very strong chemo for 11mths. Cancer came back in lungs within 6mths. March 2009 was given 6mths to live, Drs could do nothing more for me. Now March 2010 and still well, not 100% but I dont miss out on much. To look at me you would think I was normal, I look really well and most of the time feel well.

I put my well being down to diet, small things like NO sugar and lots of antioxidant foods.
Australia

Could you expound?
Hello RoseDodge,

I too have been trying to eat well and do things for myself in regard to diet and well being...

I am just being diagnosed as we speak with Fibrosarcoma and I believe that it is basically in my femur bone. I have done bone scans (which showed it was only in the femur and no where else...) and I have done xrays, as well as a couple of MRI's, a biopsy... However I am in the very very beginning process of this all right now. I meet with a whole team of doctors soon to talk about a course of action etc... I too feel completely "normal" as you say about yourself and do not understand this although I am a person of faith and so that is something I accept is out of my hands. I know there is purpose for everything under heaven...

I wonder if you could share with me what your prognosis was since your fibrosarcoma is the closest to mine by far on this website. Everyone elses seems to be in the arm, or face, or elsewhere in the body and so I related to you; ours both being in the leg. Sounds like yours was from the knee down. Mine the knee up. I am wondering if you were a high stage/grade from the beginning...?

I am trying to get a grasp of things so I know what to expect, but also I want to ask a lot of questions when I go in to see the doctors. Just wondering if anything else contributed to your prognosis (going to the lungs and your dr's giving up on you)... there has got to be more that they can do for you! I can't believe it. Was it already far spread or large in size to begin with? Sorry, this is new to me and I may be getting to personal with you... I just really hate that they can take out an entire bone, poison with chemo (you would think those 2 things alone would do it) and then have it go to your lungs. I am so so sorry to hear all of this and sort of hoped you could share more with me.

Let me know how I can support you. Trying to be healthy and positive in the USA.

FibroSarcomaUT

JoeyMN said:

yes i have it. currently
yes i have it. currently going through treatments again after being clean for one year. its in my lungs now. i dont think its going to end like i would like, but i am keeping the faith.

How are you now?
Hey JoeyMN,

How are things going for you at the moment? Where was your fibrosarcoma before it went to your lungs? Was it an advanced one or something...why did you/your dr's think it ended up getting to your lungs? I know that is one of the places it will often met. to. But just wondered if they suspected an outcome like this early on because of your prognosis in the beginning......

I hope things are going well and that you ARE keeping the faith. That is so very important I believe.

Let us know. Stay healthy in eating and mind and spirit. And keep positive influences around you.

Chez

fibrosarcoma
Last year I was diagnosed with a HIgh Grade Myxofibrosarcoma of my left forearm. I first noticed it in March 2009. I went to 2 doctors in March who told me it was a sebacceous cyst and not to worry about it. In May I went to another doctor who told me it was a lipoma and not to worry about it as I could live with it. I might add I had been a nurse for over 40 years and I didn't like this lump and so I continued to watch it grow and finally I went to another doctor in September 2009 and told him my concern that the lump may be a soft tissue sarcoma. I was sent for diagnostic tests and then 2 operations on my arm, 2 months of radiation over Dec/Jan. As the likely spread is to the lungs, I was told to have CT scans every 6 months for 5 years. The first CT scan showed a granuloma in my lung. I notified the Cancer centre and although I was aware this is benign and scar tissue, they advised me to have a CT scan in 3 months time. This was done a week ago. There is no change and there are no metastesis. I thought I would update you with the good news so far. Thinking of you all and I do add you to my prayers. Keep fighting as we now know there can be some wins.
Hopefully yours
Chez