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high grade, stage 4 sarcoma

antsueann
Posts: 1
Joined: Aug 2003

My sister (59 yrs. old) had emergency surgery about 4mos ago for a tumor on her intestines. She had a cholostomy and they thought they got it all. Original dx as GIST. Six weeks ago she had another emergency surgery. They found and took out another tumor around the original site and found another mass on the pelvic floor which they cannot remove because it is attatched to blood vessels. Now they say it is not gist, but undifferentiated sarcoma, high grade, stage IV. As soon as she is over an infection from the surgery she is to start chemo, hopefully next week. She is to receive ifosfamide (37% chance of shrinking the tumor) Usually they give ifosfamide and another chemo drug together and the chance is increased to 70%, but they don't think she can tolerate it.

I can't believe that this has happened so fast. If there is anybody out there with this diagnosis or cancer that grows this fast please respond as soon as possible. I have not been able to find any info on this anywhere.

stevelamont
Posts: 3
Joined: Aug 2003

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

nash
Posts: 1
Joined: Dec 2003

please send me more information , my husband is in similar position, other than sarcom has been in excellent health, all his life, any advice support would be of great help

Koosa44
Posts: 3
Joined: Feb 2004

My brother has been diagnosed with aggressive spindle cell sarcoma. He survived an aortic aenurysm on Dec 6 after having excruciating pain in back, diagnosed by a catscan. After 3 weeks the pain was back. Dr. diagnosed a hematoma where the surgery was. 2 weeks later he has another catscan...and now they see something near his kidney. 3 weeks before it is a pinhole and now a lima bean. Biopsy show a malignancy and there is also a spot on his back. Going for 2nd opinion and bone biopsy...he is admitted to hospital with severe pain to stomach. Now there is something in intestines and the one by the kidney is a peach pit. Diagnoses: Spindel cell and only way to stop is chemo. 3 full days of chemo with Adriamycin (Doxorubicin), Cytoxan, Vincristine.
We will do a blood test next week. Then a catscan to see if this is stopping it. Looking for a prognosis here. Any info you can give me would be appreciated. We are working around the clock on info...which there doesn't seem to be alot of. Any other drugs maybe?? Thanks!

mrmcd
Posts: 1
Joined: Jul 2009

Please give me more information. I have tumors in my abodomen, liver, spleen rib, etc. I am waiting to see what type of soft tissue sarcoma and then go to M.D. Anderson.
Thanks
mrmcd4206@sbcglobal.net

Phil22
Posts: 7
Joined: Nov 2012

My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt

Phil22
Posts: 7
Joined: Nov 2012

My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt

Phil22
Posts: 7
Joined: Nov 2012

My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt

Phil22
Posts: 7
Joined: Nov 2012

My grandson 16 he this cancer in his arm and has had treatment for two years and it slowed down but they told us today he may have a year to live, is there any info on where had your treatment at? We had his at Vanderbilt

Selina Meyer
Posts: 3
Joined: Jan 2013

Hi,

 

My husband has been diagnosed with stage 4 sarcoma,  I would appreciate any information you could give me on the supplements that helpd your wife.

My email is 1soonerfan13@gmail.com

Thank you Selina 

Selina Meyer
Posts: 3
Joined: Jan 2013

Hi,

 

My husband has been diagnosed with stage 4 sarcoma,  I would appreciate any information you could give me on the supplements that helpd your wife.

My email is 1soonerfan13@gmail.com

Thank you Selina 

skyhappy
Posts: 2
Joined: May 2013

Hi Steve, 

My cousin has stage 4 Sarcoma cancer. I would appreciate any info regarding the supplements that your wife used and the details of the treatment. 

My email is: skyblue_dc@hotmail.com

Thanks. 

-Darren- 

 

RobbinBolyard
Posts: 1
Joined: May 2013

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. 

Sadierose91
Posts: 1
Joined: Jun 2018

Hello, 

 

I am very happy to hear such amazing news. I was wondering if the tumors were located in her lungs as well? My boyfriend was diagnosed with Stage 4 sarcoma in the lungs qith plerual effusion. They said it was pushing on his windpipe. With a healthy diet and chemotherapy and supplements would help him? Could you give you more information.

ccp
Posts: 2
Joined: Sep 2018

Hi Steve,

 

Reading your post about your wife, my borther just got diagnoised with epithelioid angiosarcoma. How is your wife doing now? Anything you learned through this process? Natural supplements or any advice would be greatly appreciated. How is your wife doing now?

sgallag54
Posts: 1
Joined: Mar 2019

My ex-husband was recently diagnosed with Stage 4, high grade soft tissue sarcoma on Valentine's Day 2019.  He broke his femur in November which triggered a series of events leading up to his diagnosis.  He also has cirrhosis from drinkng over the years.  He has been extremely ill with this cancer for the past couple of months.  His ascites needs constant draining of the lymphatic fluid that continues to build rapidly.  His oncologist did not recommend any treatment as he was afraid it would kill him.  Instead, he put him on hospice.  I'm wondering if it's worth a second opinion considering how rapidly he is declining.  He really hasn't even had a chance to fight.

He has over 20 tumors in his liver and stomach, along with the cirrhosis and ascites.  

godisgoodallthetime
Posts: 2
Joined: May 2019

Can you tell me about her experience with chemotherapy?  How bad were her side effects?

cassilly
Posts: 9
Joined: Sep 2000

I was dx'd 14 yrs ago with the same staging. There are now several sarcoma centers around the country, including MD Anderson, Sloan Kettering, Johns Hopkins. The drugs selected, depends on the
pathology. I took those drugs, among others, and it was an intense regimen, lots of side effects. Sarcomas grow at different rates, I had tumor recur in that short of a time period. I would recommend gathering info regarding treatment options and utilize the major centers to get a 2nd opinion. Her MD can help you. There are sarcoma alliances and the NCI has sarcoma info as well. You can get some on the internet. Hope this is helpful.

sublignagirl
Posts: 1
Joined: Sep 2008

My brother was diagnosed in May with undifferentiated high grade pleomorphic liposarcoma....

I am looking for other surviving patients...anybody out there????

gabbycat18's picture
gabbycat18
Posts: 1
Joined: Apr 2018

My son, 43 dianosed with matatstatic undiferentiated high grade pleomorphic, and would like to know if anyone has had laser treatement to lung, and other areas his has gone, like spinal, leg bones, pelvis and in the retro pereneal that has spread to lung, spine, leg bones and pelcis.  Looking for help or information. Thank you

 

 

 

 

 

cosby01
Posts: 1
Joined: Feb 2004

i had a stage three sarcoma and it happend so fast they had to amputate my leg to save my life i have to be checked out every three months or so to make sure that it has not spread to the lungs my orthopedic surgen thinks that they got it all but as you well know it can pop up anytime i hope the best for you and hope that everything will work out for your sister and god be with you

melissasweeney
Posts: 1
Joined: Oct 2009

Hello,

I was just wondering how you are doing? My sister is in the same boat but choose to keep her leg. Since it has spread to her lungs and now her liver. She was told to seek a specialist in Spindle Cell Sarcoma.

jonnheather
Posts: 1
Joined: Oct 2010

how are you today. My mom had her leg amputated and not it is in the lungs.
Just checking to see what if it reoccured in you.

kellyradeke's picture
kellyradeke
Posts: 5
Joined: Jul 2004

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??

stefanie_whaley
Posts: 1
Joined: Dec 2012

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.

donna1720
Posts: 7
Joined: Oct 2016

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

carolann710
Posts: 8
Joined: Oct 2017

kellyradeke

HOw are you ?

Ihave a liposarcoma high grade ...just found out

 

kart2
Posts: 1
Joined: May 2013

Hi,

I was diagnosed with Pleomorphic liposarcoma on march 2013. The tumor site was unusal and it was in my scrotum. Though i visited my urologist several times, he was very confident that it is not cancerous. So i took little time to remove it and it came back as sarcoma which shattered all my dreams. I am just 29 years old male. It is in stage 4 with bone mets.

Trying to get help from doctor Richard from Duke for my condition.

t123
Posts: 24
Joined: Feb 2013

Moffitt Cancer Center in Tampa Fl is also a very good place to either seek treatment or find out about other center. Good luck. Dont give up!! I have angiisarcoma also. I send my support. Catherine

kodiak71
Posts: 1
Joined: May 2013

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

 

skyhappy
Posts: 2
Joined: May 2013

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- 

OMEAK64
Posts: 1
Joined: Sep 2016

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

carolann710
Posts: 8
Joined: Oct 2017

OMEAK64

hELLO

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

 

 

carolann710
Posts: 8
Joined: Oct 2017

Kodiak71

I had surgery for my liposarcome 2 weeks ago......can i still go to sloan ?

 

SAVEMYCAREBEAR's picture
SAVEMYCAREBEAR
Posts: 1
Joined: May 2016

My girlfriend was diagnosed 2 years ago with a tumor in the small intestine and on December 15, 2015 she went in for a colonoscopy and that's when we found out it spread to her colon within 2 years it's spread so fast she's been told it's stage 4 gist tissue sarcoma the chemotherapy pills started working but are no longer working and they have told us there's nothing else they can do for her I want to know if anyone can give me any kind of information on support groups or anything else. I'm having a difficult time dealing with this.

danishizhar_hassan
Posts: 1
Joined: Jul 2016
My Father in law is diagnosed with Myxoid Chondrosarcoma originated on buttock and which has now traveled to lungs. There are about 12-15 lesions between 6mm - 14mm. Doctors have controlled the hip area cancer with Radiations but they have told us that they can not treat it anymore because it has traveled to lungs now. 
 
Doctors here have not mention any laser treatment to us at all but I have searched on internet and found that many people have been using laser treatment to remove the cancer cell from lungs. So if anyone here has more information regarding this or anyother suggestions kindly let us know.
 
Any kind of help is appreciated.
 
Regards
donna1720
Posts: 7
Joined: Oct 2016

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. 

Brenwax
Posts: 1
Joined: Jun 2017

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.  

MaryCatherine227
Posts: 2
Joined: Dec 2017

Hi Brenwax,

I wanted to get in touch to see how your husband was doing? My husband was just diagnosed with pleomorphic liposarcoma after a lump was removed from his arm pit. The doctors thought it was a benign lump, but it tested posted for this type of cancer. 

He is on the waitlist now to see a specialist at Stanford hositpal in California. The waiting is proving to be excruciating as we don't know how much further the tumor spread in his body before it was removed.

Thank you and positive thoughts to your husband. 

Mary-Catherine 

Dawn80
Posts: 2
Joined: Oct 2017

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 

carolann710
Posts: 8
Joined: Oct 2017

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

 

StephenL
Posts: 1
Joined: Jan 2018

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?

carolann710
Posts: 8
Joined: Oct 2017

hi dawn, hope you get this and we can talk

 

Dawn80
Posts: 2
Joined: Oct 2017

Hi Carol,

Dropped you a private message. 

MaryCatherine227
Posts: 2
Joined: Dec 2017

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 

JellyFish's picture
JellyFish
Posts: 1
Joined: Feb 2018

Hi,

I’m 57 and was diagnosed with terminal STS in June of 2017.  I was told, according to what statistics they had, that I had about 2 years to live.  

 

I have reached my life limit of “the red devil” chemo and am now doing Lartruvo, three week cycles, in my port.  I feel ok other than I tire easily and I ache...bones, muscles, joints...from my waist to my feet.  In the evening it’s the worst.

 

I‘m here if anyone needs to talk.

Ceasarrincon93
Posts: 1
Joined: Feb 2018

<p>my sarcoma started out I’m my knee it took them a year to diagnose me and when they did i had got set up for surgery but before they were giving me scans an they kept coming back clean and the day before my surgery they found a spot in my lung it was a bummer I had did radiation and it shrunk a little theN I did the surgery and after I did 6 rounds of chemo Diox and and another one. After I finished the module in my leftl was stable then started to grow over months it grew to 6mm then they did another surgery and took it out of my lung the surg said I could survive it but havnt talked to my oncologist yet does anyone know or is in the same situation as me ? I worry every day I have kids I’m 24 years old and it’s been a week sinc surgery has anyone survived this before or lived a long time after the surgery?</p>

Jake Eliason
Posts: 1
Joined: Apr 2018

My wife 42 years old has been just recently diagnosed with Lyposarcoma.

MRI found a 22cm by 10cm tumor on her hip. Up until a month ago it was dismissed as Bursitis and just treated with physical therapy. She is a healthy active working mom of two teenagers. We are currently undergoing first round of Chemo, Doxi and ifos. We are at Rochester Mayo Clinic. Orthopedic surgeon doesnt recommend surgery since it wont change the course of the disease. She has multiple nodes in her lungs. If chemo doesntt work why cantg they remove the original tunor?? We have asked and all we get is it won't change the course of the disease. We need help! We are open to amputation whatever it takes. Anyone with similar situation please give us some insight. 

 

godisgoodallthetime
Posts: 2
Joined: May 2019

i had a sarcoma in my leg that was removed, then radiation.  Now i am scanned in lungs and leg every 3 months for signs that it is back.  If it comes back, chemo is the option.  Anyone experience this chemo want to talk to me about it?

_gsld
Posts: 1
Joined: Jun 2019

<p>My sister, 27, was very recently diagnosed with stage 4 clear cell sarcoma. She is now this week starting her 3rd cycle of chemo and scheduled for imaging study after this cycle. Along with the chemo, she is scheduled radiation everyday as well. Hopefully some big difference from when she was first diagnosed. Primary tumor is in her lumbar spine and has mets to lungs appearing as small modules in each lobule and also on right and left hip bone. Anyone else diagnosed with this or know someone and how are they doing? My sister prior to chemo was barely able to walk a few feet without excruciating pain because of the tumor compressing her spine. After just the first cycle of chemo, she started to tolerate walking and felt less pain.</p>
<p>&nbsp;</p>
<p>Thank you</p>

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