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LONG TERM SARCOMA SURVIVORS WANTED

sarcomasister
Posts: 7
Joined: Feb 2009

I'd like to hear the stories of some long term survivors. Please tell me your story. I'd like to be able to see that this isn't only a dismal disease. Thanks.

katydid_635's picture
katydid_635
Posts: 3
Joined: Jul 2005

hi, my name is katy, i had ewing's sarcoma and i've been in remission for 6 years now. i'm not sure if 6 years is what you meant by long term remission...but that's where i am.

sarcomasister
Posts: 7
Joined: Feb 2009

6 years is awesome!!! Congratulations!! Are there any others?

MLC
Posts: 4
Joined: Sep 2011

I've been clear of Ewings for 32 years now.

gimpy_girl
Posts: 2
Joined: Sep 2008

Hello I have been in remission from Ewings for 3 years...I know it doesnt seem long-term but feels like a century ago.

tdch
Posts: 10
Joined: May 2010

6 Years sounds absolutely brilliant and just what new sarcoma patients need to hear, the prognosis is usually so blood curdling

campsie46
Posts: 6
Joined: Jun 2012

You look fab hope you enjoy your life and was one off occasion, which Im hoping for xxx

ali_beth's picture
ali_beth
Posts: 1
Joined: Mar 2009

I'm almost to my 5 yr. remission mark. I am a survivor of osteo genic sarcoma. I had it 5 times.

Yasidasi
Posts: 3
Joined: Aug 2009

Did you need to have a limb salvage surgery or amputation? My e-mail is ydrummond@gmail.com

thanks!

zvi
Posts: 2
Joined: Apr 2013

HI. could you give us some details of your story with osteosarcoma.

My husband is currently fighting it for the fifth time and he is kind of dessprated.

He has been sick for 7 years (come and go). Did you have ck or just ressection?

any detail you can give will help a lot

thank you very much

teacher8history's picture
teacher8history
Posts: 2
Joined: Mar 2009

I am just about to reach my 4 year mark in remission from Myxoid Liposarcoma. There is always a little apprehension...but lots of hope!

ronny
Posts: 4
Joined: Jan 2007

I am going on 10 years in May. I had Ewings sarcoma, with 2 recurrences with metasis to my lungs. I am currently on a clinical trial with no signs of it.
Ron

asarcoma
Posts: 3
Joined: Mar 2009

Hi,

Can you share your experience after metastasis in lungs?. How has been your treatment?. Were they able to remove the tumor in the lungs?.

ronny
Posts: 4
Joined: Jan 2007

Hi, After my first treatment in 1999, the Ewings came back in my lungs in 2003. I had chemo and surgery to remove the spots on my lungs. On the ct scan it showed 8 spots, during surgery they found only 3. 2 were dead from chemo and there was 1 live by my heart. Then in 2006 it returned again the chemo no longer worked. My Dr. in MI sent me to San Antonio to meet with Dr. Anthony Tolcher about starting a new clinical trial called amg 479. I had some lympe nodes involved and spots on the lungs. They started treatment and in 8 days the tumors shrank by 60%. After 8 weeks the pet scan went silent. I still fly to Texas every 3 weeks and get the drug. It is given in my port and has had no major sideeffects. It is a human monocolonal antibody therapy and just attacks the cancer cells. I have been on it since Dec. of 06.
Ron

LivingStrong
Posts: 1
Joined: Aug 2009

Hi. My 14 year old son was diagnosed with Ewings this January. He went through chemo and radiation protocol. Had some pulmonary nodules, but they weren't positive they were mets. I am interested in your surgeon, the treatment you were on for recurrence, and especially this clinical trial called amg479. My husband is a cancer survivor, and had Rituxan, a monoclonal antibody for non-Hodgkins Lymphoma. I wasn't aware there was one for Ewings. Please write back.

Thank you!

ma
Posts: 6
Joined: Dec 2009

hi ronny, my name is kay. i have been thinking about going to md anderson in houston. is that where you went? i was just diagnosed in november. i live in arkansas and that wouldnt be so far to drive. my cancer is leiomyosarcoma and was uterine cancer. they told me that it is the kind that spreads seeds thru the blood but will start chemo the 22nd. how fast does this stuff spread or mastasise???? i had a 14 cm. tumor they are calling ahigh grade stage 1. anyone with info send me a note. i will pray for you all and yall can pray for me. thanks!

tdch
Posts: 10
Joined: May 2010

This treatment seems really exciting, havn't heard of it before but will remember it now thanks for your help, always looking for a new treatment my husband may be able to try.

barb321123
Posts: 1
Joined: Sep 2012

Hi im very interested in the treatment you recieved in Texaswith Dr Anthony Tolcher. you see my son was diagnosed with Ewings sarcoma on his pelvis back in October/2010 he finished his treatment 14 months after diagnosis; but his final scan proved although he has minimal activity in his pelvis bone the cancer cells metastasized to his lungs; so he was put on a different chemo to treat the lung nodules; and after 3 month of that treatment the scan proved the treatment did absolutely nothing his existing nodules grew and he got a new one as well, so the doctor sent him for 10 days of complete lung radiation a month after that he was ordered a chest ct which proved the nodules had decreased by 50% but the doctor wants to continue to give him the same chemo which did nothing for him the past 3 months and repeat a scan n if nothing has changed then she will change his chemo to something different my son has been almost 2 years of his life into chemo and him as well as myself are both anxious to finish but theses doctors seem to be in no hurry for him to complete treatment and he was 12 when diagnosed he has missed most of his puberty stuck in a hospital bed waiting around for doctors to make a better decision but i guess there are too many patients or are simply not interested in him finishing treatment but its my son who is missing out on life cause at the end of the day when doctors go home we have to stay here at the hospital for 5 days on consecutive chemo

nina0767
Posts: 2
Joined: Oct 2012

hi ronny,my name is nina, i was inspired by your story.My 13 year old son had recurrence of ewing sarcoma after only 1year and half,We live in Kuwait.he had treatment at dana farber and children hosp in boston last 2011 and just find out yesterday about this sad news of reccurence.How are you doing now? is there any latest developent? are still on amg 479? can you pls tell me more about how it work.i appreciate your help and immediate response before we go to anther treatment.as for now now theres no plan yet but to return to dana farber.can you tell me the name of the hospital were you are treating? sorry for my english im not so good at it.thx a lot.you can email me at  marianina0767@yahoo.com     pls... if anyone can relate with this .i'll be happy and appreciate your help.

 

worried mom. 

nina

 

 

 

dill
Posts: 1
Joined: Dec 2009

How you making out? I had sarcoma last spring in my leg, radiation, and surgery for that. Now got it in my lungs, and the docs say there is nothing to do. Looking for information on the AMG 479. Looking for possible docs to treat, and any info you have about it. I will go anywhere, and do anything to beat this thing!!

anitakeith
Posts: 1
Joined: Jan 2010

Tried to reply earlier, new to this, will try again:
Husband had sarcoma size of a rugby ball removed from thigh november 2008, spread to lungs & groin. Had 6 rounds of chemo, two different drugs on a trial, will get you the names if you need them, finished chemo april 2009, had clear lung & groin scans since. Had 30 radiotherapy sessions to thigh, still fine. Developed brain tumour (assume sarcoma) october 2009, had 12 radiotherapy sessions to brain, think it has worked as had lost use of left leg & arm which led to brain tumour diagnosis (lungs still clear!) and can now walk & use arm well.
Press for some chemo, ask to go on a trial. We are in UK.

Thomson
Posts: 8
Joined: Jan 2010

I am very new to this. My husband has Intamal sarcoma which apparantly is very rare. He has had an operation, radiation and is now having a third type of chemotherapy. He has two more cycles of chemotherapy after which we are returning to Scotland, UK to be nearer family.

Do you know of anyone who has Intamal sarcoma ?

tdch
Posts: 10
Joined: May 2010

Hi what part of the UK are you in? Did your husband have a specialist sarcoma onchologist and surgeon? We live in Devon and my husband is on third round of chemo since finding out he had sarcoma in his right hand earlier this year. He was treated for infection for a year before finding out the real cause. He had six operations prior to finding out and now knows it has spread to lymph nodes and lungs. He is going for a full MRI scan tomorrow and will not hear results for 9 days. Terrifying wait

Thomson
Posts: 8
Joined: Jan 2010

Hi there,we live in the US and are heading home to Ayr, Scotland as soon as my husband is fit to travel. There were no sarcoma specialists in our area so our oncologist is a Thoracic specialist. My husband had his left lung removed and a tumor removed from his pulmonary artery on the 20th April. We are in touch with a sarcoma specialist at the Beatson hospital in Glasgow, Scotland. Please let me know if you would like his contact information.
PS I have heard that his facility is the best in Europe regarding sarcoma.
Good luck with everything. Thomson.

nermin's picture
nermin
Posts: 3
Joined: May 2010

Hi Thomson,

I am very sorry to hear about your husband. How is he doing now? I am very much hopping that everything is okay and under control with your husband.

My boyfriend Ivan was with his doctor yesterday. Unfortunately they did give up and there is nothing to offer for him any more by his doctor. I am very sad and confuse.
We like to try abroad and not going to give up! I would be very grateful if you could inform me about the the treatment your husband received.
Nermin

wilee
Posts: 2
Joined: Oct 2011

First, i am very sorry to hear about your husband. Never give up!
I know it's far away but Memorial Sloan Kettering Cancer center in New York City, USA has an amazing sarcoma team and are actively conducting research in this area. While getting treatment there I met many people who traveled from all over the world to get treatment there. If you need a place to stay, Ronald McDonald House is 5 blocks away which is where I stayed during treatment. I met people who lived there 6 months or a year for free. I know it's far but isn't it worth it to get optimal treatment and save your life?

jcthomas
Posts: 15
Joined: Jan 2001

I agree with this. Memorial Sloan is a good place to seek advice/treatment, and Univ. of Md used to be good - where I was treated by Dr. Alan Levine and his team who have since dispersed to different hospitals. DO NOT skimp on the treatment and most places who are conducting research and/or clinical trials are usually the best places to seek out.

Was diagnosed in 1995 with sarcoma in right leg hamstring. Underwent a treatment of high dose chemo with a stem cell transplant, surgery, internal and external radiation, and then follow up rounds of chemo. Complications too numerous to mentions. I will say that 16 years later I have finally been able to put the past behind me as the disease and treatment haunted me for many years.

Should also mention that I lost the hamstring muscle in my right leg but I bicycle (road and mountain) and have done numerous 100 mile rides and have racked up tens of thousands of miles on my road bikes.

tdch
Posts: 10
Joined: May 2010

Hi my husband has had epitheiod sarcoma, his first tumor was in his right hand he stayed undiagnosed for over 5 years. He had six operations before they found out it was sarcoma. This was in 2010 and he has had treatment of doxyrubicin chemotherapy and radiotherapy to hand through summer of 2010. He has many mets in lungs and lymph nodes as well as several tumors removed from other spots on body. The mets on lungs have not been removed.
He has had cat scans every 3 months and the mets on lungs have stayed the same with little growth. His onchologist is pleased with this resultand i think he and the sarcoma surgeon are amazed he seems so well at this stage of the disease.
I read recently about an elderly gentleman whose lung mets disapeared after years of high doses of omega 3 oils. Does anyone have any information on the dosage that should be taken. My husband is not on any treatment for sarcoma at the moment. He just has small tumors removed as and when they reappear.
We live in the UK in Plymouth we did ask to be referred to a large sarcoma specialist centre in London but were told they thought there was no other treatment available to him.
I would be grateful to hear of any one who has taken omega oil supplements which have helped. them or their loved ones

daniel711731
Posts: 3
Joined: Mar 2013

Hello:

 

I read your info., hopefully your husband is doing fine, I have been diagnosed with the same except it is in my small intestines, I had 2 small intestine sections removed about a month ago, this week I get a PET scan and then a port for my chest, they will be giving me the same chemo you have listed. Any more info. on the omega 3 or advise with this angiosarcoma

thanks, Dan

t123
Posts: 25
Joined: Feb 2013

I too have angiosarcoma. I finished 6 chemo treatments and cant say enough agout the port I have. It made chemo so much better. Good luck. Cathy

greydawn's picture
greydawn
Posts: 1
Joined: Feb 2014

I don't know if you are still on this site but take a look at the Macrobiotic diet -I have endometrial carcinosarcoma and the oncologist says it would have killed me (two months ago) now that it has matastasized to my lungs.  I have been on a vegetarian diet for the last 2 years and on the Macrobiotic diet specifically for the last month.  People have gotton themselves out of "terminal" situations with this diet (which is a lifelong diet - never return to as much meat and sugar) and I feel great and have not coughed up anymore blood since December.

 

I hope you receive this post!

tdch
Posts: 10
Joined: May 2010

This is brlliant news can you tell me if Ewings sarcoma is anything like epitheliod sarcoma?

blake2
Posts: 2
Joined: Jul 2011

Hi Ron, My younger brother was just diagnosed with Sarcoma and it was attached right behind his lung. It was removed along with the area around it. Was this similar to what you had?

campsie46
Posts: 6
Joined: Jun 2012

Hi Babes

Sure youll be fine this is a freak disease, we are special lol xxx

bmscan's picture
bmscan
Posts: 36
Joined: Apr 2007

First tumor 10 years ago. Have had 7 total. Clear for past 2 years.
...Beating the odds!

I have written a short story(?) and posted it under Liposarcoma (or go to my user name)...

bellasbell
Posts: 6
Joined: Feb 2008

I had liposarcoma a tumor in my thigh 11cm x 11cm,got chemo/surgery/radiation. That was in summer/2007-Jan/2008. I've been cancer free since then. Although I have had pain and problems with pain still, walking,falling at times, I know Im lucky to be alive. I think I may have been over-radiated and I have alot of tissue/nerve damage. I would love to see a sarcoma group started. There are so many groups for other cancers,when I was looking for info. and help, I couldnt find anything. Im always looking for sarcoma survivors to see if they have had the same experiences as Im having and how they handle the pain,etc. Im continuing to live with on a daily basis. I hope people respond and if anyone knows of a sarcoma survivor group(I live in Tampa,FL)and even the hospital(HLee Moffitt) couldn't find sarcoma groups in Fla.It would be really nice to see how others have dealt with what Im dealing with.

ljgetfit's picture
ljgetfit
Posts: 4
Joined: May 2009

i am a synovial sarcoma survivor. 6 yrs!!! just did Relay 4 LIfe on friday!

dodot
Posts: 14
Joined: Dec 2010

My wife Robin whom I love so much has been diagnosed with Leiomyosarcoma and has been fighting the disease since 2005. I have found someone in Tampa that is going to help us through this journey and would love to tell you about it. Please email me at ksodders@jlroberts.com I will pray for you and your family. Please keep us in your prayers aswell. Stay strong and God does answer prayer.

Kendall from Mississippi

t123
Posts: 25
Joined: Feb 2013

I was just dx with angiosarcoma. I live across the bay in clearwater fl. How are you doing? Where did/ are you getting treatment?

cyclegirl
Posts: 1
Joined: May 2009

Hi-
I had a rare type of sarcoma called a "clear cell" that primarily affects extremities; I think now it's called distal extremity sarc, or something like that.

Diagnosed in 1990. So now coming around to my 19th year post! I was 25 in '90, so I was pretty young. Not really a kid, but most definitely not an adult.

What is your interest?

tdch
Posts: 10
Joined: May 2010

I hope you are still doing well a year has passed since this statement, I was wondering if clear cell and epithelioid sarcoma are simialar both seem to effect the extremeties. My husband has epithelioid sarcoma and it started in his right palm. How was yours treated in the beginning, and how quickly was it diagnosed? must have been rare then.

ccsdad
Posts: 1
Joined: Dec 2009

Cyclegirl, could you give me some idea of the treatment you went through with your clear cell sarcoma. my son has had six surgeries last two in his lungs clean margins, but now they want to use chemo. Just wondering what was your case. Anyone reading this post has info on chemo and clear cell it would be appreciated.
thank you

katherine71
Posts: 9
Joined: Jan 2011

My clear cell was on the bottom of my left foot. I am lucky that it has not spread anywhere else. The only treatment for it was partial amputation of my foot. I still have 1/2 of it. 9 months after surgery, they say I am cancer free. I have scans every 3 months. I did not have chemo or radiation because they said the margin was clean & the benefits did not outweigh the bad effects of the treatment.
"Clean margins" for your son sounds really good. That was the best news I heard also. How old is your son? How was his diagnosed? Did he have chemo? I'm sure you have the best doctors for him & we just have to have faith in them.

aka7787
Posts: 2
Joined: Jan 2011

My boyfriend had CCS and was treated at the mayo clinic, dana farber (where a few clinical trials are being offered to CCS individuals) and another hospital in the midwest; all of his docs had treated CCS patients previously and had never yielded a positive or even medial result from traditional chemotherapy :-( I'm not sure what docs or other information you have received on oral chemo trials, etc. but I would suggest looking into dana farber in boston (docs butrynski and wagner are two that I know are directly involved in these trials). Also, please private message me and I can get you into contact with several other individuals with CCS - they are all wonderful and supportive! I hope this message finds your son doing well and beating this terrible cancer!

Melvynman
Posts: 7
Joined: May 2004

Seven years survival. I don't think Chemo or radiation work, sorry. Work on diet, stop feed the cancer cells. Try reading The China Study.
Stop eating all dairy products, now. Doctor's are good at cutting, removing, drugging, ect... but they suck at curing. Doctor's kill or remove the cancer cell, along the way they kill and remove a lot good cells. Doctor's going to do what they do and you most likely have to go alone with it. You need to feed the body what its need to help the healing and cure the cancer. I wish your son well, good luck.

Jbean3303
Posts: 1
Joined: May 2009

My name is Jill and I have been an osteosarcoma survivor for 10 years now! I decided to try and make a different in the best way I knew how.... Im now an Oncology RN in Philadelphia. Actually, in the same office where I was treated. I now work with a group that does a ton of Sarcoma research trials! Im hoping to get rid of this disease and everything about it.

beanmama
Posts: 3
Joined: Dec 2004

Congratulations all around! I am a 9 year osteo survivor too! Did you have it in your femur? Wow, how do you stand on your feet all day if you are an RN? I honestly thought of being a nurse but didn't think my leg could handle it. I have alot of pain still off and on. I sure hope you and your group can eradicate that nasty stuff! How ironic that you are in the same office where you were treated. You go girl!

Heather

I want to survive
Posts: 3
Joined: Nov 2010

I go to the CTCA in Philadelphia. Is this where you are?

noah
Posts: 4
Joined: May 2009

I was diagnosed with Ewings sarcoma in 2003, had chemo and surgery, then more chemo (all at MD Anderson in Houston). Everything has been clear since then, but I still freak out whenever my back/shoulder aches (the tumor was in my scapula).

honey123
Posts: 1
Joined: Jun 2009

Hi i had a leiomyosarcoma and have been cancer free for 2 and a half years

ma
Posts: 6
Joined: Dec 2009

hi, name is kay. you are the first i have talked to withe leiomyosarcoma. tell me about your experience. where did it start and has it spread any? i was just diagnosed in nov. mine was uterine. i start chemo the 22nd. dont know why it is taking them so long to get me started.where are you from???? please reply and god bless you.

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