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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.

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.

kbranoff
Posts: 2
Joined: Jan 2010

My cancer was found in the uterus after a routine hysterectomy to remove a large fibroid. A week later my doc called and said they had found cancer. I was shocked. Of course I was the lucky 4 in a miliion that get this type of cancer. I currently undergo treatment at Kamanos Cancer Center in Detroit. Rated #1 two years in a row. I consulted with them and a week later they had me set up for chemo. They work really fast. Sent me to a chemo class and off I go. I am receiving Gemzar and Taxotere. It's working. I have been on chemo for almost eight months with the only side effect being hairloss. That is the hardest but after a while, you get over it. Trust me. I had long beautiful hair and I almost don't even miss it. My wig looks great and I never have a bad hair day. With each scan, there has been shrinkage in my tumors. My doctor said he's never gone past 6 rounds and I am going on 11. He is quite impressed with my case. This cancer spread really quick. In dec. of 08, I had one small nodule on my lung. By June of 09 I had several. They couldn't confirm it was the LMS until I had a lung biopsy. The nodules had to be at least 1cm before doing a biopsy. By then I had several. I hope you are seeing a sarcoma specialist. This is very important. I am only 39 with 3 teenagers. I am going to kick this cancer's ***. Fight like a girl and beat this with me. Stay off of the internet except for support groups or survival stories. Alot of the info you get online is outdated and can scare the hell out of you. You are not a statistic you are an individual and everybody tolerates things differently. These docs are great but they are not God.

mb112660
Posts: 8
Joined: Dec 2010

Hi.I am newly diagnosed with LMS.Mine also was found after a routine Hysterectomy.I am not undergoing my treatment at a Sarcoma center,but want to because of all Ive been reading. I am scheduled to begin with radiation then follow with chemo. I would welcome any info you could share with me.I love your attitude about your hair loss. Quite frankly, I could care less about my hair.I hope you are doing well.I will keep you in my prayers.

katherine71
Posts: 9
Joined: Jan 2011

My sarcoma is not the same as yours but you really need to see a sarcoma specialist. I don't know where you are located but I have an excellent doctor in Pittsburgh, Pa. During my diagnosis & surgery, I had 3 doctors & they consult with each other weekly about all of their patients. They work as a team & are on the same page. Even though I talked to different doctors they all knew my case & I could tell they work together for their patients. Hope this helps. If you would like more info, Dr. Tawbi works at the Hillman Cancer Center in Pittsburgh, Pa.

Riesbrian7
Posts: 1
Joined: Jun 2009

Didn't see any with this one posted yet, but I'm right around 24 years since I was diagnosed. The rhabdomyosarcoma was located in the back of my head. Keep the chin up, the best advise I can give is not to give up. Everyone knows the sarcomas are bad to have, but attitude helps a lot. I was between the ages 7-8 when I came down with it. My parents did not have the heart to tell me I was terminal. I truly believe that if I had known what the doctors said, I probably would not have made it. Attitude is a lot in the fight, you can not give up. I'm 31 and can say I survived when I was terminal and wasn't going to make it a year. I hope this gives encouragement to you and any others that read this. Good luck with your battle and same to everyone else.

Brian Ries

dlrobins
Posts: 17
Joined: Sep 2009

Brian, Thank you so much for posting your winninng battle with rhabdo. My son kyle is 21, and just beginning the fight. He was diagnosed in July 09, and has been through 2 sessions of vac with little success. He will soon begin a more aggressive chemo regiment, and we are positive we will see this tumor shrink. Kyle's tumor is in his neck. Thank you for positive outlook... we know that kyle will make it through this. Lots of love and luck with continued good health. Debbie Robinson

amybrook
Posts: 3
Joined: Feb 2010

I was so glad you see your post. I am a Rhabdo survior of 23 yrs. I am 33 and was diagnosed when I was 10. I agree that all you can do is fight it. I know there were a few times the pain was so bad, I wanted to give up and give in to it. Without my fmaily there to remind me of what I had to fight for, I may not have made it. I have been looking for another survivor of about the same age to compare long term side effects and issues. If you don't mind and would like just send me email. Thanks

tdch
Posts: 10
Joined: May 2010

Wonderful story gives us all courage and hope Thank you

Completely Off-Guard's picture
Completely Off-Guard
Posts: 5
Joined: Mar 2013

Brian,

Your story gives me,along with many others, HOPE.  Thanks for sharing it.

Timothy

dmartinemtp's picture
dmartinemtp
Posts: 11
Joined: Jan 2013

Good for you. I was 15 when diagnosed Ewings in my spine.

I felt the sam

e, if i knew how bad it was I may not have made it.

I am 42 years old now. Lot of limping and leg pain That i never had is

Now worsening. Working with a neurologist at University of Miami

Hospital. Keeo me informed with your progress. Diana

Diana.Martin 305@gmail.com

Diana

 

l_tyner
Posts: 1
Joined: Feb 2009

my son is an ten year survior. he was 19 when he was diagnosed with synovial sarcoma in his left foot. we went to the univ of wisconsin, madison, for treatment. treatment consisted of amputation of the foot about 6 inches above the ankle. he didnot receive radiation or chemo, the tumor appeared to be intact. he was followed very closely the first two years after surgery, the doctors wew afraid of a possible return in the lungs. he has adapted to
his disability well. he works every day and got married three years ago and is the proud father of a five month-old son. today he and his wife are in madison, he is having some burning in his knees. i so hope it is not a return of the cancer, he has been through so much . so hope this can give you some encouragement. lisa

dhempflinger
Posts: 2
Joined: Jan 2009

I was first diagnosed in july 1999. Had large softball size tumor under arm pushing on my scapula. Got it removed and zapped by radiation. Then reacurred in my lungs a few months later. Had chemo. Ever since, I've had 5 more reacurrances, mostly in my lungs. First hematologist didn't think I'd live more than 2 years, but here I am on my 10 year mark. First four years were very rough, but do too loving parents, family, and friends still alive and living my life to the fullest.

BAEdwards
Posts: 3
Joined: Jan 2010

Nice to hear that you are doing so well. I have been fighting synovial sarcoma for a little over 4 years now. I was diagnosed in October 2005. I have had three surgeries, chemo. twice and ratiation once. It has matastesized to my lungs and lymph nodes. I just finished chemo. and I am getting ready to start radiation again to hopefully shrink the tumors. Surgery is not an option for me because of the location. I was just curious if you are cancer free or if you have heard of any successful trials for synovial sarcoma. Any info. would be greatly appreciated.

Thanks,

Beth

chriswife
Posts: 4
Joined: Jul 2015

My husband has it in lungs n lymph nodes need info. No treatment started yet. Live n st louis mo not sure where to go. Havent heard about surviors r how long lived with it. Only people with the tumors only

chriswife
Posts: 4
Joined: Jul 2015

Error flagged i wanted to save and mark this for later. Not sure how to do this stuff yet

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

Are you still there?
I would like to exchange emails, as I also have had synovial sarcoma for seven years (first on on the left hand), with 2 reaccurances in lungs at the fifth year and the seventh year. I would like to exchange with you on the long term management of this illness, how did you do, many times operated? chimio at each time? how did you handle this? I am affording my fifth round of chemio this year (after five rounds in 2008) and I just believe that I will stop it at the sixth and basta ! They are talking about ablation by radiofrequency on the tumor which left (I had two but one disappeared with chimio)
please answer me, I am French and we can find nothing in our country about synovial sarcoms like your forum, you are my only hope you know about having more knowledge on the subject? I have a six years old daughter who is now praying and has many hopes on my healing, I can not leave her in this cruel world without her mummy. I am now 35 years old.
I would like to have information on the relevance of a pleuropneumomectomy, as in my hospital in Marseille, 12 out of 14 people operated for synovial sarcoma have not made it. So only 2 long terms survivors out of 14! Can someone just give me more hope than that? It does not help me.

annastomose
Posts: 1
Joined: Feb 2013

Bonjour Lesslie,

Comment vas-tu ? Je viens de rejoindre ce forum, à la recherche de témoignages et de nouveaux traitements.

J'ai un léïomyosarcome utérin métastasé aux poumons, et j'ai déjà eu doxorubicine, gemzar (à La Timone, service du Dr Duffaud) et yondelis. Suivie maintenant à Bordeaux par le Dr Bui.

Je serai heureuse de t'aider si mon expérience peut t'être utile...

A très bientôt j'espère,

Anna

chriswife
Posts: 4
Joined: Jul 2015

Like to hear how you are today. My husband has this

cathycarey
Posts: 1
Joined: Jun 2009

I had a tumor on my thigh, had 3 surgeries to get to clear margins. Only residual problem is that the scar tissue grew into my sciatic nerve and causes nerve pain.

rc dobbs
Posts: 2
Joined: Jul 2009

I think I qualify as a long-term survivor, 35 years this month. There have been ups and downs during that 35 years due to the aftermath of the cancer but when given a 5% chance of survival at the original diagnosis, I guess life has been pretty good. Diagnosed at the age of 22, I am getting ready to celebrate my 58th birthday Saturday.

CTPatient
Posts: 3
Joined: Jul 2009

Happy birthday!!!! Survivors and families, please post all the good news we can get. My boyfriend if fighting his second tumor and sometimes we just feel so hopeless. I want motivate him but get so drainned with the bad news all the time. It is great to read about good turn outs. God bless everyone

dlrobins
Posts: 17
Joined: Sep 2009

rc, I am so thankful that I logged on to this today... my son kyle age 21 was recently diagnosed with rhabdo. This is such an aggressive cancer, and it literally shakes your world. We have all the faith in the world, that kyle will make it through this battle, and just reading about your survival makes us even more stronger in our belief. Thank you so much! Debbie

dlrobins
Posts: 17
Joined: Sep 2009

RC... Thank you...People like you continue to give hope everyday. My son Kyle 21 is fighting the RMS battle, and is determined to come out a winner. Thank you for your words of inspiration. Wishing you continued good health and happiness. Debbie R.

kbranoff
Posts: 2
Joined: Jan 2010

Awesome!! You give us all hope.

dmartinemtp's picture
dmartinemtp
Posts: 11
Joined: Jan 2013

I am a 26 year survivor of Ewings sarcoma . 

Some physical problems, but still here.:)

mwetter1954
Posts: 7
Joined: Jul 2009

I was diagnosed with ESS on Oct. 16, 2000. It's been almost 9 years!!! I was treated for 5 years with the drug Megace and as of my last CT scan, July 28, 2009, I remain cancer free!

rhenry3
Posts: 8
Joined: Jul 2009

I was glad to see some long-term survivors of Rhabdomyosarcoma. While my son's diagnosis is non-rhabdo it is similar and treated the same. He is 7 yrs old and was dx in Feb. 09 with an 11 cm mass in the middle of his liver. He recd 6 rounds of doxorubicin and ifosfamide followed by a liver transplant in May and 2 more rounds of chemotherapy in Aug and Sept. He just had his first post transplant CT Scans which show no evidence of disease; however, I am still cautious about getting too excited as I have not seen many survivors of this disease and there seems to be a lot of recurrence. Has anyone had long-term effects from the chemotherapy???

sarcomasister
Posts: 7
Joined: Feb 2009

Glory Hallelujia! I left this network feeling pretty worried and not wanting to return because of fear about what I might read. Lo and behold, here is a long listing of survivor stories. Here is our story and please, please keep responding. It is such a lift to hear these and to not only read the sadness on the internet.

My brother in law(42 years old now) was dx. 18 months ago with unspecified and/or Leiomyosarcoma. We have been to Mayo, MD Anderson, our excellent cancer center where we work, and ultimately to Germany to have laser metastectomy on his right lung. His primary was never found despite head to toe body testing. Every orafice of his body has been ultrasounded, prodded and explored. His primary, although rare, was ultimately thought to be in one of his lungs. He was not symptomatic but was found to have this disease on a trial of a new piece of CT equipment that they needed one person to try(THANK YOU JESUS).

We have had tumor profiling done with both Clarient and TMD(Targeted Molecular Diagositics) and have learned that his tumors are receptive to PDGFR and EDGFR. This is ultimately very, very technical and baby research. However, we are particularly interested now in therapies that have worked for others since this last week we found growth in size and number in the left lung. I would like to know what people have been treated with as well as side effects, information you have etc.

We are researching everolimus/metronomic chemotherapy and treatments which have made you disease free for so long. Please, keep writing. Thank you.

catbird
Posts: 33
Joined: Sep 2009

i was diagnosed 1 mo ago with leiomyoma & this had given me hope as the dr's have not treated this type of cancer before

sarcomasister
Posts: 7
Joined: Feb 2009

Catbird, what are you doing for treatment? Where is your LMS?

catbird
Posts: 33
Joined: Sep 2009

lms was fibroid on the uterus & not expected to be cancer. currently getting chemo gemzar 1 week then the gemzar & docetaxel the next week. where in germany did u go? I know someone else who went there for another cancer type. how is your brother in law doing?

bertha
Posts: 1
Joined: Nov 2009

Hi. I saw in your post that you are getting gemzar 1 week and then gemzar & docetaxel the next week. That is the same treatment plan that I've recently been put on. I had gemzar last Friday and am to get gemzar & docetaxel this Friday. How were the side effects of the gemzar & docetaxel combination for you? Thanks!

catbird
Posts: 33
Joined: Sep 2009

side affects not too bad - lost 80% of my hair around weeks 4-7 then it stopped. i have not been sick at my stomach etc but i receive 2 medicines before the chemo intraveneously. i have gained weight & have swelling in my ankles etc in the past 3 weeks it started due to the steroids. i am able to work full time & i drive myself to & from the treatments, etc - i am very tired about 2 pm in the afternoon 48 hrs after treatment & typically get very little done for the rest of that day & night. my muscles are weak but i had surgery prior to the chemo etc so trying to get on the treadmill & build them up more - glad to know someone else is on the same treatment

catbird
Posts: 33
Joined: Sep 2009

my comments "posted" twice the same thing ??

ma
Posts: 6
Joined: Dec 2009

hi there, just a note to say that i have lms also and was just diagnosed. where are you from? i am 59. would love to talk to someone about this. dont know what to expect and it is real hard for me to be positive. thanks, kay

catbird
Posts: 33
Joined: Sep 2009

i responded to you i think it was you under the lms

i am 56 yrs old in the dallas area

dmartinemtp's picture
dmartinemtp
Posts: 11
Joined: Jan 2013

Hi. I have heard about many survivors of that type of cancer.

I am a 25 year survivor of Ewing sarcoma. I was 15 years old at the time of diagnosis and was giving a poor prognosis.

it was in my lower spine so I had massive amounts of radiation and chemotherapy. I am now 42 years old and dad live a long healthy at active life. recently I've had trouble walking and wrap it in both my feet in lower legs I am being treated at University of Miami. however my doctor said this is the worst of it long term survivors usually have some type of radiation damage to the nerves. I can still walk but have some days worse in others with my limp. please email me at Diana dot Martin 305 at gmail.com if you like. best wishes.

 

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mrr3rd
Posts: 1
Joined: Oct 2009

I was diagnosed in 2003 with synovial sarcoma in my right knee. My fabulous Doctors at Mass General Hospital in Boston, Ma were not only good but great! They not only saved my leg but with no chemo I am now five years free of that cancer! The tumor was 5cm x 5cm which they stated did not require chemo. I had five weeks of radiation then surgery. Unfortunately I have just been diagnosed with Squamous cell carcinoma of the penis. This is totally unrelated to the synovial sarcoma. I will need more surgery but it looks like no chemo or radiation in my future (I am crossing my fingers).

Tapua
Posts: 1
Joined: Oct 2009

I was diagnosed in 2003 with Grade 2b/3 Adult Soft Tissue Sarcoma which developed in my left calf and invaded my left anterior tibia. I am back at work, living life to the fully - got married 2 years ago to the man of my dreams and very happy. By the way I live in Woodstock NSW Australia your entry info insisted on a state and oddly though it recognised Australia it wouldnt recognise any of our states. So my profile says I am from Michigan ... I think:))

BAEdwards
Posts: 3
Joined: Jan 2010

I was just curious what kind of treatment you received. I was initially diagnosed with synovial sarcoma in my right forearm October 2005. I have been fighting it off and on for a little over 4 years. I have had 3 surgeries, chemo. twice and radiation once. It has matastesized to my lung and lymph nodes. I just finished chemo. which, from my scans showed that it didn't change anything. I am getting ready to start up radiation in hopes that it shrinks the tumors on my lymph nodes which are causing the most problem. Just looking for any info. on a great Doctor, a clinical trial which has worked etc. Any positive info. would be great. Thanks!

Beth

CaliforniaLesli
Posts: 4
Joined: Nov 2009

Wishing you the best --- and sending you my story.

I am a survivor. I have 19 YEARS and 4 MONTHS under my survivor belt. I am a survivor of a large retroperitoneal abdominal mass ----- actually the tumor was 8 pounds in weight!

I underwent massive surgery - my surgeons were very aggressive........I had three courses of chemo --- struggled with the recovery. I had many organs resectioned (removed) and that has been a challenge along with a compromised immune system........but, I am strong, happy, take very good care of myself (with the help of my oncologist and other specialists.)

Please have the strength to carry on, fight the fight and everyday move forward........it got me here, oh, so many years later.

Best of luck, always.

lesli

ma
Posts: 6
Joined: Dec 2009

lesli, just read your post. yours was very encouraging. i am from arkansas. where did you get your treatment???? happy to hear about your sucess. could you please call me. @ 501-344-2304. thanks you. kay mason .

ErnieB3
Posts: 3
Joined: Oct 2009

Lesli,

Well, my tumor was 7.9 lbs and they took my spleen, kidney,the tumor and a good amount of my colon to Cleveland. I live in Illinois.
Is the lack of a number of organs causing you discomfort?
Thanks for posting on this website. It is hard to find anyone with liposarcoma involving the abdoman. EWB_3@comcast.net

wendytennis
Posts: 1
Joined: Feb 2010

Hi Lesli:
Congratulations- this is wondrful news.
I am interested to hear about your encologist and treatment. I too had an 8 pound tumor in my retroperitineum and in Octoer of 08 had very agressive surgery removing my tumor, kidney, spleen and a piece of my colon. My tumor was encapusulated and the pathology reports showed no signs of metastis so I was not given chemo or radiation. In my 8 month scan new tumors were found. I am currently taking receiving my second round of chemo therapy- doxil.
I will find out in a week if it is shrinking the turmor.

Can you tell me who your drs. are and what your treatment has been.
Best,
Wendy

ironman008
Posts: 2
Joined: Aug 2010

Lesli,

So wonderful to hear your story of success. Where did you seek treatment? I have a retroperitoneal liposarcoma and am seeking treatment here in Southern California now.

Thank you.

marc1957
Posts: 79
Joined: Oct 2009

Only in the lung, rare they told me, usually it is spread to the lung.......

two lobes removed, almost ( dec 8th ) 11 years, doing fine, mostly :)

Ironically, I am scheduled for a da vinci robotic prostate removal, on the same day, 11 years later ( dec 8th ).

ttamng
Posts: 10
Joined: Nov 2009

My sister had synovial sarcoma on her L foot and it is spread to her right lung. I miss her and love her so much.

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