LONG TERM SARCOMA SURVIVORS WANTED

4 year
I am up to my 4th year and my cancer has one come around once (which is enough). I've had no signs of a relapse since

dhempflinger said:

I have synovial sarcoma also. Had for 10 years now.
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.

a French mummy in research of information !
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.

katydid_635 said:

6 years in remission from ewing's sarcoma
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.

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

cyclegirl said:

clear cell
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?

Epithelioid sarcoma
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.

ronny said:

metasis to lungs
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

treatment
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.

tdch said:

treatment in UK
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

Sarcoma
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.

long term survivor
My husband is a long term (11 years) survivor of liposarcoma. 3 surgeries, 2 different chemotherapies, 2 radiations. He is still active and healthy (other than the cancer), and rides ultramarathon bike rides. The best description of the situation I have heard (from his doctor) is that they treat this as a chronic condition. My husband had 7 years without disease the first time, and 3 years the second time.
Best of luck!

CaliforniaLesli said:

Liposarcoma Survivor
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

Keep on fighting
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.

crazy98 said:

May 10th I will be 11 years
May 10th I will be 11 years cancer free!! I was dx with osteosarcoma in 98'. I have had 14 surgeries, 9 months of chemo therapy and 2 knee replacements! But I am healthy and haven't had a surgery in about 4 years. Main complications have been with my knee replacements. Probably will have to have another one. Any other survivors dealing with the maintenance of their replacements?

hardware maintenance
I don't know what they've done to your knees, but I was having trouble & they resurfaced the back of my patella with some type of nylon product to my knee would glide better on the hardware.

Janet
http://www.caringbridge.org/visit/janetchadwick

crazy98 said:

May 10th I will be 11 years
May 10th I will be 11 years cancer free!! I was dx with osteosarcoma in 98'. I have had 14 surgeries, 9 months of chemo therapy and 2 knee replacements! But I am healthy and haven't had a surgery in about 4 years. Main complications have been with my knee replacements. Probably will have to have another one. Any other survivors dealing with the maintenance of their replacements?

Hardware and Long Term Survivor
I am blessed to be able to say " 21 yrs of being cancer free...and counting" I was dx with osteosarcoma of my right femur and knee in summer of '89 I was 13 y/o. I had my main surgery in which they removed the tumor and replaced my femur and knee with implants, have had 3 surgeries besides main one(femur implant broke in half, knee slid out of place and didn't have much range in motion of knee) and 12 months of chemo. I have been healthy since then and I haven't had surgery since my Junior in high school (a very long time ago).
A year ago I fell and broke my knee cap (which I didn't even know I had one on my artificial knee)got away with wearing a cast for about a month instead of surgery (had no insurance at the time). And a year later a screw came out of the part where my femur implant meets knee. I will be having surgery in October to replace most screws of the lower femur implant and a total knee replacement.
I am feeling a bit "jumpy" about having surgery...it's been a long time since I have had one. But I faith everything will turn out well. I will be better off with a "new" knee I am sure they are a lot better now a days then when I was a kid : )
Congratulations to all you survivors!!!