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soft tissue sarcoma looking for someone to talk to

pokerguy
Posts: 1
Joined: Nov 2002

my cancer has spread to my lungs and i have been battling this for over two years . I have lost my left arm , had multiple surgery and alot of different types of chemo im looking for someone to talk to who has went through or is going through something similar thank for reading this Chris

571er
Posts: 5
Joined: Mar 2003

HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

amelina
Posts: 3
Joined: May 2003

so happy to hear that there is real hope for Gleevec! I too am on a clinical trial at UofM for Gleevec for a sarcoma in my neck. 4 more weeks until my next MRI..hopefully mine will be shrinking too. Gleevec may be a gift from God!

Tallmo
Posts: 2
Joined: Mar 2003

Not sure what I'm doing here so please have patience. I'm curious about this Gleevic. My husband was told today to get his affairs in order as there is nothing more that can be done about his spindel cell synovial sarcoma. He's been fighting it for 2-1/2 yrs. It started in his lungs and has metastized to his face. His whole right cheek is involved and it's moving into his sinus cavity. Because of it being in the sinuses the doctors refuse to do surgery for fear that it will release blood clots that will cut off the brain's blood supply. I'm now looking at clinical trials. My email is tallmofam@bright.net. I'd be grateful for any advice you can give.

Gini
Posts: 3
Joined: Sep 2003

I have just found you when I looked for persons who have been on or are on studies for Gleevec. I have just signed on to be a participant, uterine cancer metatastized to lungs. Hysterecomy in Jan 2002, abdominal radiation, met to lungs and thorocotamy in Jan 2003, chem in Apr - July 2003...no change, now palliative care 3-6 months, they say, so the Gleevec study is last chance...any problems with Gleevec, how are things going???? would love to hear...grandma-g@tds.net..

myleio
Posts: 2
Joined: Apr 2009

Hi I am about to have my third laparotomy in 2 years. I have not been offered any alternative therapy only surgery. I live in New zealand and we seem to be far behind you in what's available for treatment. Could you tell me what type of surgery you had.

lmcgra
Posts: 4
Joined: May 2010

Just wanted to let you know that someone is here if you ever want to talk. I was diagnosed on June 9th with angiosarcoma of the soft skin tissue and the week before the doctors removed 10 pounds of skin where the 10+ cm tumor was on my abdomen. I am still healing from the surgery. Does anyone know what kind of treatments there may be? I have to see a radiation and chemo doctor at the end of this coming week.

I am trying to remain positive and pray every single day that there may be an answer for ALL of us to be healed. May God Bless ALL of you and if anyone out there wants to talk, please do.

bburnsljl
Posts: 3
Joined: Jul 2009

I have abdominal sarcomas as well and nees help. It started in the uterine, ovary and pelvic area in later 2005, next mets went to stomach, next to bothe (several), now in stomach again. Grows very fast and is painful. Me too so many surgeries, chemos, toms on radiation and brachytherapy. I have asked about Gleevac, but dr, says not for me for GIST. I do not think it matters at this point what we try. Who is your dr.? and do u suggest him or another. I am stuck in Orlando, and need guidance. 407 461-5468 jr

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nanapat6225
Posts: 3
Joined: Jan 2014

Since you live in Orlando try calling Shands in Gainville.I lived in Crystal River and was tranfer to Shands after finding out I had a 20 pound surcoma in my stomach the surgon Christine Shaws is great. good luck

 

Wreyn
Posts: 1
Joined: Mar 2003

Dear Chris: This is my first involvement in a chat group, so apologies for not knowing protocol. Following extenxive radiation, my wife's tumor was removed and her arm totally reconstructed in Dec. 1999 by a wizard at Sloan Kettering in NY. Chemo followed (MAIDS) with all that entails. Clean until August 2002 when lung nodules appeared...surgery to both lobes followed. More lobes discovered in January and we are now waiting for a second round of Cat Scans next month. Probable outcome is clinical trials at Sloan using PS 341 and then wait to see if further surgery is necessary. Have followed something called Et347 but can't real;ly figure out what J & J is doing with that trial. Difficult times but she is feeling and looking great, with each day being pretty special.

flaca
Posts: 1
Joined: Jul 2003

hi,
my brother is facing the same thing, last week he had part of his lung removed. his cancer is agressive, he is only 33yrs old. how can i help him??

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kflindquist
Posts: 5
Joined: Feb 2004

How is your brother doing now? The best way you can help him is to be there for him, either in person or on the phone. Many friends fail to call the patient, because they don't know what to say. Many spouses leave too. The best gift you can give your brother is your love.

Pastor M.
Posts: 3
Joined: Jul 2009

Hello
Just drop by to let you know that my son is 33 was told April 2009
That he had it. It broke my family down. But we pull together to
Be the best support that a person could have. We founded a
Lot of products on the web, but be careful of giving false.
My son decided to try a treatment by Dr.Budwig look it
Up and review it. It is information only. If you need more
Information just reply to this message.

shebby
Posts: 1
Joined: Nov 2009

Hi

Did you find the budwig protocol helpful? my dad was diagnosed with soft tissue sarcoma and i have got him on the budwig protocol mixed with the traditional treatments.
Any input will be appreciated.

Thank you and good luck on the progress.

cheylaineb
Posts: 4
Joined: Jun 2009

I am a 14 year cancer survivor and I had soft tissue sarcoma in my left arm. I it start out as the size of a pea when I was 17 year and was misdiagnosed as fatty tissue it didn't start growning until I was 19 year old it got to the sized of a golf ball my sister encourage me to go to a specialist and he was not clear on what it was. I got a biopsy done and it came back cancerous. The surgeon did surgery. I assuming he never perform surgery on this type of cancer and he removed it wrong. I found 2 month later there were piece still left in my are. I then went to Cleveland Clinic they took Awesome care of me.
I had a 25% chance. I was told my sarcoma was in stage 5 the last stage. I had get surgery again and the rest of the sarcoma removed. I choose not to get amputation of my arm and chemotherapy. I figure if it was in its last stages it had already spread. I did radiation treatment and I have been in remission for 14 years. Keep hope, keep praying, and keep your spirit up. During my fight I kept my spirit up and kept living. I went to my treatment like I was going to see my future and my faith played a huge role

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BigPapaBear73
Posts: 10
Joined: Jun 2009

Thank you, i really needed to read this, i have very recently just had surgery for liposarcoma in my neck. The surgery was a success and all was removed. Once i am healed i will be going through radiotherapy for 6 weeks. I was happy when my Oncologist gave me the pathology report, but i can't say that i am not worried about the sarcoma coming back. But reading your post gives me more hope. Thank you.

cszj
Posts: 1
Joined: Jun 2009

So happy to hear you have had success! My husband was "misdiagnosed" with renal cell cancer 18 months ago. The mass was found and it was engulfing his kidney. We were told to see a urologist immediately and that the kidney had to come out.
2 weeks later, it did, but then pathology didn't know what type of cancer it was. After 2 weeks of testing and sending it to Brigham Young in Boston, it was determined to be a liposarcoma. Our oncologist in Jersey strongly recommnended we go to Sloan Kettering in NY as they had specialists there who see this cancer much more often than anyone else.
There is residual cancer tissue remaining from his initial surgery, and the doctor at Sloan has been monitoring it for the past 18 months. Last September, they had to go into his lung to take out a small spot which they believe was a metastisis. The residual cancer tissue has not moved or grown since his initial surgery, however, dr. says it must come out sooner or later. They consider it to be non-aggressive which is good, but it can turn at any time. Chemo does nothing for this type of cancer and surgery is the only solution. Chances are very high that once removed, it will recurr again, and then surgery will be needed again. It has been a difficult road so far, and we have a limited support system. We have two children, 15 and 11. This has turned our lives upside down. If you or anyone has some information about this type of cancer, I would appreciate hearing more. My prayers are with you as we all battle this horrible disease.

bigdawg32
Posts: 3
Joined: Jun 2009

I just want to say to everyone to stay strong and have faith in God, and faith in yourself. Every one of us is battling this disease and all of our stories are different,but in a way they're all the same too. The roller coaster of emotions has hit every single one of us. But the best thing we can do is keep a positive outlook and take things one day at a time. Be patient with your friends and family. They're dealing with cancer just the same as we are. In fact, sometimes I think it's harder for them. Stay strong!! I'll keep each and everyone of you in my thoughts and prayers...

ErnieB3
Posts: 3
Joined: Oct 2009

During a routine examine Dr. Schriedel tapped my belly on the left side. I felt a twinge. Ok, he said, your spleen is enlarged. I said what the heck is that all about. Pretty light response. Well, after a MRI, I had surgery and they took out my left kidney, spleen and colon resect. The spleen and kidney were surrounded. They also removed a 7.5lb mass. They sent it to Cleveland. By the way? That is the most of me I'd like to see go to Cleveland.
Well, I was sent to Dr. Guehaja at the Edward Cancer Center in Naperville. She put me through two rounds of Chemo. It helped but not enough. THen I went though another four rounds and that helped a bit more. She sent me to see Dr.Undevia at the Masonic Hospital Cancer center. He put me on Vitrial. That helped a bit, it killed the cells in the middle of the four little tiny tumors on my diaphram. There was a little spot on my Lung, but the Dr that did the biopsy missed. Anyway, last ct can showed nothing on my lung. I am waiting to start another Trial after New Years. The cancer is not so much a worry as just keeping up with the side effects of kidney and spleen and colon damage.
Surgery is not an option, there are to many nodules. But the Chemicals seem to be keeping them at bay. Check with other sources of treatment of Sarcoma. So far, the greatest danger for me was the chemo. The Creticos Center at the Masonic Hospital in Chicago has the Gilda Center in it as well. Evie Sprague is the Clinical Care Coordinator, she is quite familier with Sarcomas. I would recommend talking with her. I will forward her phone number if you want. Ewb_3@comcast.net is my emial address.

bburnsljl
Posts: 3
Joined: Jul 2009

I too was misdiagnosed here in Florida with a borderline tumor, that turned out to be 'hi gr.3 mullerian adenosarcoma w/ sacromatous overgrowth (20 cm). Much came out hysterectomy,oopherectertomy, lymphadectomy, omentectomy, no clear margins whatsoever. No dr. seems to knoe anything about adenosarcoma.I would greatly appreciate it if u could guide me to the best hospital and or dr. u have found. My dr. and the moffitt and md andersen have seen liposarcoma, but claim not adenosarcoma.I have had 4 mets. with surgery 2 more times chemo, radiation and chemo again after rad. Other times more chemo, radiatin and more chemo. Getting pretty worn out and tumor still feelss like it is growing. Help please.

Linda1234
Posts: 4
Joined: Jan 2013

My mother has had a very similar situtation. I would like to know if you have had any responses.

I hope you are doing well.

Linda

t123
Posts: 25
Joined: Feb 2013

Linda, I live in the Tampa Bay area (Clearwater). At first they thought I had breast cancer, but after the biopsy I was dx w/ angiosarcoma of the breast. I have had 6 chemo treatments & my 2nd scan shows it has not spread.. I'm in stage 3..: Where is your Mother getting treatment? I going to Fl cancer specalists. Chemo was not that bad. I go in for surgery next week. I wish you all the best.. Cathy

mernp50
Posts: 2
Joined: May 2009

I was diagnosed in May with liposarcoma of the right thigh. I had surgery to remove the tumor that weighed 4 lbs and am in radiation now. I understand the faith and I know about the worry. I have lots of friends praying for me and I am sure you do too. This is a strange disease and it sends me on a rollercoaster every day...(did I mention I HATE rollercoasters)...I will be praying for you as you journey through this too.

Sandy C.
Posts: 4
Joined: Jul 2010

In September of last year I was diagnoised with soft tissue sarcoma after several months of going to emergency room with pain in left hip.(where it started first they say but it wasn't till Sept that year thinking I was having a heart attack did the doctor find I had a tumor in my left lung that was pushing on the heart. Then in May of this year when I was finally going thru my first trial chemo after being told that there wasn't any other on the market for mine, that we were flooded out of our home with the cloths on our back. Then one month to the day I was in a accident that broke one vertibrae and my left wrist. If it hadn't been for my faith that God was in control of all and that if that all hadn't killed me then He has plans for me. Without my faith there is no way I could make it.

clerkin
Posts: 1
Joined: Jan 2010

it is so important to stay strong and to have strong faith, this is the only thing that us goind when my 12 yr old son was diagnosed with synovial sarcoma in his foot.
like you amputation was mentioned but we went with other options as my son is a very keen footballer.our motto at home is POSITIVE MENTAL ATTITUDE.

lesslie's picture
lesslie
Posts: 6
Joined: Feb 2010

so? how are your son now? whas has happened since then?
in any case, always keed this positive mental attitude, it is all what we can have for us for sure.

Mitchelle
Posts: 2
Joined: Jul 2010

Hi -

I read your post, my sister was just diagnosed with Stage IV spindle cell sarcoma and is being treated at the cleveland clinic. Who is your doctor? What type of treatment did you have? I am so happy to hear of your remission and would love any insights of things my sister could do to survive.

nataliet2105
Posts: 1
Joined: Jun 2010

I'm 23 and have a soft tissue non cancer tumor in my calf. Officially fibromatosis. Very rare tumor etc. I was on Chemo when I was 15 and it seemed to stop the growth. I'm still endure pain everyday. I recently moved to Boston where a sarcoma specialist is wanting to put me on Gleevec. Not sure whether to go for it and try or wait it out. Like I said I don't have cancer but it is a highly aggressive tumor. Can't do surgery because of size and location. It doesn't really interfere with my everyday life -- yes painful but I can live with it and have been for 7 years. Has anyone been on Gleevec for something similar and if so how did you react? Side effects etc??

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

I went through 10 mths of treatments for Ewings sarcoma of the soft tissue of the back of my neck with mets to my lungs.At the age of 44 this is very rare as it is a childhood cancer. Chemo first shrunk everything and partial lung removed in January with 4th round of chemo and 35 radiation treatments to back of my neck/head to end it all. Waiting scans in August and am a nervous wreck. Sarcomas are all apparently rare. My body has been to hell and back but my prognosis is good. I am still so scared of dying and leaving my family. I am sure everyone else feels similar - how do you cope? Living with cancer is the toughest thing to do and still live life. This is my first time writing to this site - any help we can give each other would be great.

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