high grade, stage 4 sarcoma

kodiak71 said:

your post

hello,

i'm a 2 time survivor of dedifferentiated liposarcoma.  2010 & 2013 (currently in recovery).  it can be beaten & don't let it shatter your dreams.  i thought the same in 2010 & i'm still fighting.  i received treatment at MD Anderson as nothing here in vegas would work.  MD Anderson is amazing if you can get there.  they have a whole team (doctors, nurses, surgeons) who just focus on sarcoma classifications.  i hope you get your treatment & fight through it.  stay strong, laugh every day.  mine was located in pelvis each time & have had damage done to testicles & colon.  if you have questions about MD Anderson, i can give you contact information directly for teh sarcoma doctors.

regards.  scott

 

Hi Scott, 

Recently, I found out that my cousin has stage 4 Sarcoma cancer. Can you please give me additional details and contact info for MD Anderson? 

I would like to help my cousin in any way that I can. Your information would be greatly appreciated. 

Thanks. 

-Darren- 

stevelamont said:

Hi,

My wife is recovering from extensive soft tissue sarcoma. She had 15 or more tumours and was also offered Ifosfamide and Doxorubicin in combination as a last resort. She had to stop the Ifos after one round and continued with Dox for 5 more rounds. This was easy compared with combination. She also did supplements to help with nourishment and side effects e.g. flax oil, hydrazine sulfate,co-q-10 to protect heart.

She is now clear for last 6 mths.

I can give you lots more information if you want.

Steve Lamont
steve.lamont@pyinna.co.uk

What type of sarcoma does she have? My husband has stage 4 medistatic meshychimal chrondosarcoma. He is in hospice care right now. The doctors say there is nothing left they can do for him since it is now in his bone marrow And the chemo did not work. 

stefanie_whaley said:

My little sister was 24 when she found out she had stage 4 sarcoma cancer. within 2 weeks they had her at Barns hospital doing a massive surgery on her. The basically had to reconstruct her from the bellybutton to her thighs after the surgery. She was put on a high dose of chemo and medications, and had around 7 surgerys within 4 months. They told us that she had less than a year to live. she was rushed to the E.R. one night due to breathing problems and they rushed her to Barns hospital. There they put her on life support. After speaking with her doctor we had found out that he had been with holding information from us about where the cancer had spread to. We found out that it had spread to her kidneys 2 month prior and the doctor had not told us. I would have gave my sister 1 of my kidneys but the doctor said that she wouldn't make it through abother surgery. If he had told us when he found out in the 2 months prior I could have gave her 1 of my kidneys then and she would have made it through the surgery. But at the hospital while she is on life support they tell us that her kidneys are shutting down. We had a decision to make, we could leave her on life support while the cancer took over her body and all of her organs shut down or we could take her off of life support. I was crying and histarical. I wasn't ready to say bye to my little sister. I was getting ready to call me dad to tell his that he needed to come to the hospital and I saw on my phone that I had a text message. The message had to have been there for a couple of days and with everything going on I must have over looked it. I opened the text message to see what it said, and it was from my little sister. It said " I know either way I'm going to be okay. I wanna stay here on earth for along time but if I end up in heaven I'll be another angel with Jessie, Grandma, Grandpa, Carly and all them." She passed away that night. I sooooo miss her but she is always with me. From the time we found out she had cancer till the end was only 6 months.

What a sad story. I am so sorry you lost your sister.

donna1720 said:

Anyone still on the board

Anyone still on the board with undifferentiated polymorphic sarcoma? My husband has had surgery on the thigh. High grade, deep seated. He's going to do radiation and some holistic. 

My husband was diagnosed with Undifferentiated pleomorphic sarcoma in his left thigh in January. 5 weeks radiation and surgery. I'd love to chat about how treatment went/ is going for you.  

kellyradeke said:

I am 36 yrs old and a mother of 3. I have a pleomorphic liposarcoma (high grade) I am between a 3 and a 4. I have not started treatment as of yet due to my just finding out about it 2 weeks ago. This thing is fast growing and very rare.I live in Alaska and they are sending me to seattle to see a specialist because they have not seen this enough to know how to treat it correctly. ITs pretty darn scarey....and I have yet to find someone who has what I have ....let me know if you find info relating to our similar situation??

kellyradeke

HOw are you ?

Ihave a liposarcoma high grade ...just found out

OMEAK64 said:

dedifferentiated liposarcoma

looking for conversation about this cancer.  I have it.  Cussy

OMEAK64

hELLO

jUST DIAGNOSED AND 2 WEEKS PAST SURGERY ........DONT KNOW WHATS NEXT CAN WE TALK ?

Dawn80 said:

Ongoing treatment - UPS stage 4

Hi, 

I am currently going through a treatment of my stage 4 undifferentiated pleomorphic sarcoma.

I was diagnosed with Sarcoma in January this year and went through 5 weeks of radiation followed by a left thigh resection in May. Unfortunately, the sarcoma mets were found in my lungs in July. I am going to have a left lung thoracotomy this week to remove the lesions on left lung. Please feel free to write to me for any questions / information.

 

I believe I can survive and beat this disease. God is with us 

. 

hi dawn, hope you get this and we can talk

As of this week, I learned my husband (who is 37 years old and otherwise very healthy) has been diagnosed with high grade pleomorphic liposarcoma. He had a 3.5 x 2.9 x 3.1 tumor removed on Nov. 22nd. He first noticed the tumor under his arm (arm pit) at the beginning of September 2017. I was very optimistic at first, but today we learned that the sarcoma is a pleomorphic which is aggressive as I am researching. He has been referred to a sarcoma specialist center at Stanford hostpital, but now we have to wait. 

I'm looking to hear from anyone who has survived this type of sarcoma cancer and what their treatments paths were, if there was recurrance, etc. 

Thank you very much and God bless all. 

Mary-Catherine 

carolann710 said:

unfifferentated plemorphic sarcoma

dawn, Ihave the same diagnosis stage 3 ...left thigh hip...........4mm lung met ..dont know what it is ...so far......had surgery , now waiting for radiation and chemo.......the sugeron said she got it all out, however, I was at a non sacoma hospital......so who knows what she really did....I am in michigan and now planning to go to the university of michigan.....I feel scared and alone of the unknows

just have my surgery oct 4, 2017

 

carol,  my husband has the same diagnosis...but the main tumor is in his abdomen with nets in his liver.  How is it going with you...did the universe if Michigan help?