LONG TERM SARCOMA SURVIVORS WANTED

Abbysgram

survivor9yrs said:

breast angiosarcoma survivor 1 yr.
secondary breast angiosarcoma. caused by radiation for breast cancer. rare. did chemo, had surgery. doing good. hope to be a long term survivor.

Currently in treatment...
Diagnosed in the year 2012 had mastectomy in july. Just had last of 6 round of doxil..next month will start radiation therapy...i believe this is a new idea in treatment..as it is thought to prevent reocurrance locally. I am wondering where you had treatment and how you are doing now.
Thank you

Shorti4727

I'm a 12 yr osteosarcoma
I'm a 12 yr osteosarcoma survivor !!

MyDadNeedsAMiracle

jjb2497 said:

malignant fibrous histiocytoma
I have malignant fibrous histiocytoma MFH. Does anyone else have that type of Sarcoma. I was diagnosed about 7 months ago. Had 2 surgeries and 30 radiation treatments. Now I go every 3 months for an MRI and CAT scan at Seattle Cancer Care Alliance. Occurence was the upper right thigh.

My Dad also has malignant fibrous histiocytoma

My Dad's started on his arm as a small lump in May 2012.  It grew to the size of a softball in one month. It was removed, got radiation treatments, and one thing that disturbs me is that the machine was broken for a week, and he had to go without treatments for 5 days while they ordered parts.  Soon after a month of radiation, the cancer became vengeful and took over his entire arm. He can't even move his fingers now!  Just 2 weeks ago, (Dec 14 2012) they found 11 spots on his lungs that they call malignant nodules, the biggest one being 4.3 cm in diameter.  He is about to start chemo next week, and he fears for his life! THey say its stage 4, and that his lungs are so saturated with tumors that they cannot remove them all, they would be taking out all his lobes if they did!   He is a nervous wreck and can't eat, can't sleep, but I am here looking for success stories to give him hope.


Could you please tell me how you did with your battle? I hope you are still around and enjoying a good quality of life! I havent seen anyone else on this site with his type of sarcoma til now... so I hope to hear from you!   YOu have a blessed day and a wonderful 2013 ahead of you I pray

learningrichard

not only dismal

Howdy. My first post to this site. Guess I'm late posting to this article..in 2009 I was going through the ravages of 6 roundz of 72 hr chemo sessions which in the end almost killed me themselves...I was diagnosed with neutropenia and went into Geo. Washington Hosp. in DC after having fever of 104 deg. If my sisters hadnt been visiting at the time I would've tried to ride it out and I would probably be dead to be frank.

I am a 44 year old survivor of MFH having found an aggressive 5 cm tumor on head of right femur or upper leg bone at joint with hip. I underwent hemipelvectomy which is amputation of leg and part of pelvis to completely removd tumor. Then 6 rounds of aggressive palliative or prophylactic chemo at Johns Hopkins Kimmel / Weinberg Cancer Centers in lovely Baltimore MD.

It is now January 2013 and my leg has still not grown back unfortumately. I am amazing on standard aluminum crutches... I have an Otto Bock prosthesis worth altogether probably seventyfive thousand bux but no one with experience to teach me so I have become a pro on crutches. My wonderful daughter of ten years of age is starting to feel self conscious so i am considering getting back on the limb and the rigor of learning how to use it.  I am unemployed and not on disability. Wife and I are no longet together so I live alone in Richmond VA in small two story  three br house. I'm taking applications for a new female life partner to my daughter's chagrin.

so my amputation occurred jn Dec 2008 and chemo ended in June 2009. I was given...well never mind oddz I wont post here ask me separately if you wanna know. Takeaway is that Im cancer free. I start the clock one year after last chemo so by my calc its been about three years ok four since chemo ended and my last scan looked excellent... just two weeks ago in fact. I'm college educated with a BS in mathematics and computer science but I'm as superstitious as a Siberian hillbilly so I hope I havent jinxed myself!

Thanks for reading this if you got this far. Tell me your story of long term survival and of hope. Love to all of my brave and strong fellow cancer survivors. We kick major a$$. Hang in there as long as you can draw a breath there IS hope.

lvfemma

Shocked and need support

I had a tumor on my left leg after an injury.  Thought no problem.  Turned out I was wrong.  Sarcoma.  It was removed but the pathology is indicating (rather strongly) that the leg is not the original site and it has spread.  One of the positive markers shows sacromatoid renal carcinoma.  After reading about this, it does not look good.  I am 57 years old.  No pains, no symptoms, nothing.  

I am hoping to be able to keep in touch with all of you so that I can make sense of this.  I am devastated with no appetite.  I am waiting for final Stage after I have the CT/PET scan to see if it has spread.  

 

All help and hope appreciated.  I have not told my daughter as her father was just diagnosed with prostate cancer.  And I need all the information.  

 

L

t123

bellasbell said:

Sarcoma survivors
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.

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

annastomose

lesslie said:

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.

sarcome métastasé

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

dabrewsky

cfox1995 said:

My mom is a 6 year LMS Survivor and I am doing the relay for her
My sister and I are running/walking in the Relay for Life of Central Rankin April 1, 2011 at 6:00 p.m in honor of our mother Naomi Fox who is a "CANCER SURVIVOR" (Praise God). We are very grateful to be able to run this race with much endurance because our mother has fought this fight for 6 long years and she still hanging in there. My moms track record is listed below:

January 2005 - Surgical removal of LMS Tumor located in the Ureter, Teratoma Tumor Removed and complete hysterectomy.
January 2006- Surgical removal of LMS Tumor in the Coracoid/Glenoid Process (Left Shoulder bone removed) onset of disability
December 2008 - Surgical removal of LMS Tumor in the Psoas Muscle and small intestine
November 2010 - Cryotherapy surgery to remove LMS Tumor T-10 Vertebrae
January 2011 - Radio Frequency Ablation to remove LMS Tumor T-10/T-11 Vertebrae Area
March 2011 - Craniotomy surgery to remove golf ball size LMS tumor from the brain and small LMS tumor from ear canal

You can find our names on this link (Priscilla and Chantel) to support us:

http://main.acsevents.org/site/TR?team_id=893812&pg=team&fr_id=28878&fl=en_US&s_tafId=586567

amazing story, thanks for

amazing story, thanks for sharing your mom's battle.

TheFilmDoctor

10 year survivor!!

This August will be my 11th year anniversary. I was diagnosed when I was 10 years old.

 

Rington

Sarcoma 20 years ago

I have just found this site and find that there are many experiences described that I am having.  I had a large sarcoma removed from the top of my left thigh 20 years ago and then had 84 sessions of radiotherapy.  I was warned that there could be ‘scatter’ on my ovaries and there was. Recently it was pointed out that there are very important nerve bundles at the back of the pelvic region behind the ovaries.

 I was able to carry out my normal life activities until about 6 years ago when with hind site I began to have trouble with my left leg which eventually became a dropped foot and pain increased in my right leg. I have had injections in my spine and an operation for decompression of spinal stenosis.

 

My surgeon has accepted that none of this has worked.  I have been treated by a physiotherapist (massage and acupuncture) for about 4 sessions and already feel a lot freer around the hips. Over the 20 years I have been treated by an osteopath who has kept me straight and stimulated my lymphatic system.

I am happy to answer questions.

grandma25

long term survivors

I just joined to encourage you. I had Ewings Tumor when I was 5 and my leg was amputated when I was 7. I am now 67. I was given 2 months to 2 years at the most to live way back in 1950.  I am here to encourage you that only God knows when we will be born and when we will die. I am living a very full and happy life. Happily married for 48 years/ 3 kids/ 11 grandkids/2 great grandkids. God has certainly blessed me .

 

 

Completely Off-Guard

Riesbrian7 said:

Rhabdomyosarcoma Survivor for approximately 24 years
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

Hope

Brian,

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

Timothy

dmartinemtp

Riesbrian7 said:

Rhabdomyosarcoma Survivor for approximately 24 years
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

ewings survivor

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

 

dmartinemtp

rhenry3 said:

Undifferentiated Sarcoma
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???

survivor

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.

 

dmartinemtp

rc dobbs said:

Rhabdomyosarcoma survivor
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.

Happy Birthday

I am a 26 year survivor of Ewings sarcoma . 

Some physical problems, but still here.:)

daniel711731

tdch said:

sarcoma treatment
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

epithelioid angiosarcoma

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

daniel711731

bevans1942 said:

5 year survivor of Angiosarcoma
This is cancer of the blood vessells. I am now having my second operation with end
the last three months. I thought I had this whipped but has come back with a vengence.
All of this at this time is local and has not metastasized to the lungs or liver. My next Ct scan will be sometime in Feb, 2011. I would like to hear from other people that have had this type of sarcoma.

Hello

Hi:

Just been diagnosed with Angiosarcoma, it is in the small intestines, I go this week for a PET scan, then chemo begins next week, just curious to find out how you did it and maybe some tips..

 

thanks

dan

terrypris

leiomyosarcoma

 I do not want my report posted on youtube or media.nowpublic. It would be to help others. Let know what you will do with my report.              

terrypris

Rington said:

Sarcoma 20 years ago

I have just found this site and find that there are many experiences described that I am having.  I had a large sarcoma removed from the top of my left thigh 20 years ago and then had 84 sessions of radiotherapy.  I was warned that there could be ‘scatter’ on my ovaries and there was. Recently it was pointed out that there are very important nerve bundles at the back of the pelvic region behind the ovaries.

 I was able to carry out my normal life activities until about 6 years ago when with hind site I began to have trouble with my left leg which eventually became a dropped foot and pain increased in my right leg. I have had injections in my spine and an operation for decompression of spinal stenosis.

 

My surgeon has accepted that none of this has worked.  I have been treated by a physiotherapist (massage and acupuncture) for about 4 sessions and already feel a lot freer around the hips. Over the 20 years I have been treated by an osteopath who has kept me straight and stimulated my lymphatic system.

I am happy to answer questions.

sarcoma

13 years ago I went thru chemo for sarcoma.  Last june I was told that it was back. Every two month the doctor send me for a CT. There was no change on the March CT.  It was the same as the one taken in Januray.  I don't care to keep going every others month for a CT.  I notice that my stomach is getting big. I did mention this to the doctor, all she said that my stomach is soft and not hard so that is fine. Did the size of your stomach changed? I feel there are things that I should be doing to  help myself but I don't know what to do. Do you take any kind of medication?

My right foot started huring me I already mention it to the doctor, But they just tell me that it looks OK.  But there are days that the pain is hard to take. What kind of doctor do you see for your foot? 

 

I know that I have problem that concern me, my aga, I am 80 year old. I am very active I Thank God for being with me in all that I do.

This is the first time that I am sending an email concern my sarcoma. Thanks

t123

daniel711731 said:

epithelioid angiosarcoma

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

you will be so thankful for the port
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