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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.

cesrod
Posts: 3
Joined: Jan 2010

My wfe has a big tumor that is practically covering her entire right lung, it was diagnosed as high-grade malignant osteosarcoma, only in the lung, not spread from somewhere else, it looks very similar to what you had. At this moment she is feeling pain in the chest and back, also she is having problems with swallowing, and she is very weak, she has lost a lot of weight. We will appreciate to have a conversation with you to hear your experiences and recommendations.

ma
Posts: 6
Joined: Dec 2009

hi, im from arkansas. hard to get anyone to answere on here. how are you doing and how long have you had this? i was diagnosed in nov. my name is kay. would be great to hear from you and if you have heard from anyone else please let me know if you have any info. thanks

armygirl3549
Posts: 1
Joined: Jan 2010

I am coming up on my 4 year anniversary. My tumor was in my left thigh, undifferentiated sarcoma. I had radiation but no chemo as it was classed at the U. of Washington as a low grade. I have some pain and swelling in my leg but feel very lucky.

bwlingatstarlite
Posts: 11
Joined: Mar 2010

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 :)

tiffycent
Posts: 1
Joined: Mar 2010

I was diagnosed with rhabdomyosarcoma at 3 and a half weeks old. My parents were not given much hope but through determination and much prayer here I am typing this, having just celebrated my 24th birthday! Praise God! I know I went through about a year and a half of treatment. My last chemo treatment was right before my little sister was born in 1987. I have been in remission for almost 23 years. I have had a few problems as a result of the location of the tumor and the aggressive treatment but it is nothing I can't handle and I still have my life and that is what I am sooo thankful for. Keep your faith in the Lord strong and His mercy and grace will show itself.

janetannchadwick
Posts: 11
Joined: May 2009

wow! that is awesome. I'm out 10 years with 5 occurrences, 20+ operations, and high-hip amputation. I post a blog just about every day on the below site that I thought you'd find interesting.

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

crazy98
Posts: 25
Joined: Dec 2004

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?

janetannchadwick
Posts: 11
Joined: May 2009

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

FunnyFace's picture
FunnyFace
Posts: 15
Joined: Oct 2008

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!!!

crazy98
Posts: 25
Joined: Dec 2004

21 years!! that is awesome!! It's November now so I am hoping your surgery turned out ok! I bet you with the advancement in technology your knee will feel so much better after you recover! Hope all is well!

FunnyFace's picture
FunnyFace
Posts: 15
Joined: Oct 2008

Hi "crazy98" Thank you and yes my surgery went extremely well (my doc is awesome)! He ended up just replacing all the screws on prosthesis. Doc check knee and femur and everything looked great for now will need replacement maybe in 10yrs. Right now I am getting physical therapy getting my muscles stronger than before. It's not easy but it feels great..my therapist is "rocks"..he has gotten me to bend knee more than before, leg press more weight then I ever thought possible, and helping walk "normal" something I haven't done since my first surgery. Congrats to you for celebrating your 11 years (AWESOME)! Hope all is well with you and Best Wishes for 2011

onhold
Posts: 24
Joined: Jun 2010

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!

janetannchadwick
Posts: 11
Joined: May 2009

I've outlasted this disease past all odds. 10 years, 5 sarcomas, 1 chemo, 1 high hip amputation and still kicking! I don't know what your personal story is, but you are welcome to talk with me via caringBridge.

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

psek927
Posts: 2
Joined: Sep 2010

I am 2 years out from surgery and radiation. Myxoid Liposarcoma of the left thigh (23 cm). Scans of my leg and lungs have been clean, so far. Two years probably doesn't sound like a "long term" survivor, but I am so grateful and humbled to be here!

suzie sunshine
Posts: 15
Joined: Mar 2010

Hi, two years sounds encouraging, because I have heard that these sarcomas can reappear within two years. I have had two operations on my left thigh for myxofibrosarcoma, and 32 radiation treatments since January 2010. In July 2010, I saw my Oncologist, and I haven't had any scans since before the operation. I'm nervous about this, and was wondering how often are scans of the original site and lungs taken. My next appointment with my Oncologist is in February.

Chez
Posts: 24
Joined: Nov 2009

Hi Suzie
You and I are very similiar. I went to 4 doctors to get aomeone take notice and remove my lump which they thought at first was a sebacceous cyst and then a lipoma near my elbow. finally I convinced a General Practitioner to send me for tests. there was an immediate response and like you I had 2 surgeries to get a clear margin when the path results showed that it was a high grade myxofibrosarcoma. I too had 32 sessions of radiation last Christmas and January. One of the CT scans showed a granuloma in my lung which had not shown up on previous scans so I had to have another CT scan of lungs, abdo and pelvis 3 months later. this scan showed no change. I am due for another scan now but will wait until after Christmas. I too think about the 2 year period and then getting to 5 years....All the best..except for the site of the sarcoma we seem to almost match neck in neck so to speak..the cancer centre hasn't told me to return so I am back in the hands of teh General Practitioner and I find I am keeping an eye on when I have to have scans..it would be nice to have an oncologist watching over me at least annually to discuss all clear. Hope you do well.

jjb2497
Posts: 8
Joined: Sep 2010

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.

Marvusman's picture
Marvusman
Posts: 22
Joined: Sep 2010

I was 1st diagnosed with a huge 12.5 cm Leiomyosarcoma in my duodenum in my abdomen which underwent a Whipple surgery to remove. I didn't need chemo as there was no metastases but then just after 1 year my cancer returned and I underwent another surgery. It was rough having another massive surgery through the same scar tissue and same point of entry. I'm awaiting the start of chemo and probably GLEEVEC now as I also have a small cholangiocarcinoma. Anyone have similar experience? The truest thing I can say is that while cancer may strip away parts of your body NEVER let it strip away your soul and spirit.

Sphinx
Posts: 1
Joined: Dec 2010

Dear All,

My name is Nela and I am 33 years old. Although I have been reading your posts since December 2009 when I was diagnosed with malignant peripheral nerve sheath sarcoma, is only now, one year later, that I dare to post something myself.
I think that my story is good even though I have been through a lot of bad, I want to tell you that things can look really bad at some point but get better and improve so don’t give up keep on the fight. Here it goes (I am sorry is a bit too long and my English not the best)

In June 2009 I discovered a hard lump in my right groin at the same time that I experienced strong pain on my right leg. The doctor said he didn’t know what I had but probably nothing serious and sent me home (this happened in Denmark, the place where I was working at that time). Next day the pain in my leg became unbearable and so my doctor arranged me an appointment at the hospital. Unluckily, I didn’t have time to get there because I got unconscious wile I was getting ready to get out of my place. Luckily, a guy that came to check the heating system in my apartment was knocking very strong at my door and I woke up in the floor next to the door with strong pain on my chest and feeling awful. The guy called the ambulance and in the hospital they diagnosed a thrombosis on my right leg that provoked a lung embolism, my heart could not take the extra pressure in my lungs and that was the reason I collapsed.

The doctors in Denmark said that I was too young to have thrombosis but after some test they concluded that it was caused by taking contraceptive pills. They ignored completely the lump in my groin and said it would disappear by itself even though I kept asking if this lump could be the cause of the thrombosis. As three moths later the lump hadn’t disappear and my leg was still swollen, I decided to go for a second opinion to a specialist a friend recommended me in Belgium (the country of my nationality). There, the doctors found immediately that the cause of thrombosis and the lung embolism was the lump on my groin (as I suspected) since it was pushing on my artery and vein.

The doctor in Belgium seemed in a hurry to removed the tumour cause it could cause a second lung embolism and scheduled a surgery in two weeks time. Unfortunately, I had a second lung embolism before the surgery came and they had to operate me in an emergency to put a filter on my cava vein to avoid more blood clothes to go into my lungs. The second lung embolism was worse than the first and let me with strong pains in my lower back. The treatment for lung embolism is a very powerful blood thinner that dissolves the clothes in the lungs but the risk of internal bleeding is very high (and I was having it for the second time). So I was in bed for two weeks wile having this treatment and during this time I was not allowed to move or get up even to the toilet. I was also bleeding thorough every single hole in my body and spiting blood from my lungs!

After these two long long weeks came the operation which meant one week more at the hospital. At this point I still didn’t know what kind of tumour I had and the doctors claimed that it could be anything from nothing serious to very serious. I finally could get back home after three weeks in the hospital in November. It was in the beginning of December when I was still recovering from the surgery that I got the diagnosis: malignant peripheral nerve sheath sarcoma. We started immediately talking about treatments: chemotherapy and radiotherapy.

The operation had gone well and the doctor had been able to remove the tumour completely and reconstruct the artery. The surgeon told me that he had decided to treat the tumour as if it was malignant from the beginning so we had nothing to regret afterwards (thank god). Even though the tumour was completely removed I had to go through chemotherapy because of the kind of cancer and because I had lung embolisms that could have increased the risk that a cells escaped from the tumour. On the 14 of December 2009 I started the first of five session of chemo each one lasting five days which I had to spend at the hospital. The whole process took around six months. Each time I had the chemo I was very sick and my white cells went very low increasing the risk of infection. Once I even had an infection which cost me five additional days to the five of the chemo in the hospital including my birthday and by New Years Eve I begged the doctors to let me go home. I had never felt as lonely as that before, even though I wasn’t lonely, my family came to support me and my husband was with me all the time. After the chemotherapy came 35 doses of radiotherapy, and I finished in the beginning of August 2010.

The recovery after the last chemo has been quite impressive, I put on the weight I had lost, my immune system is almost normal, all the pain from the embolism have disappeared although I lost a small part of my right lung (scar tissue due to the embolisms) the doctor told me that our lungs “are over equipped” and they can compensate rather good the “missing part” I fact I don’t feel any difference with before to ne honest.
My leg recovered also very well from the operation although radiotherapy has caused it to swell and get a bit stiffer than before but I can walk normally.

After the last radiotherapy I have been enjoying life and trying to accept all the changes in my life. Since then I had three scan controls which have been clear and I hope it continues like that. I have been travelling a bit with my husband and I intend to go back to work next February 2011.

I have to admit that although I am still able to enjoy life and now even bad wine tastes good I still get very nervous when I have an appointment at the oncology department or when something hurts. I cannot help thinking that the cancer could get back. However, I keep fighting: I got enrolled in Yoga and Pilates classes, I keep doing my painting hobby and reading, I love eating and drinking my glass of red wine with dinner. My hear has started to grow again and even when I had a very long and wild curly hear before my new hair looks very strong and healthy and everybody tells me short hair looks good on me.
I don’t know what the future is bringing, but again no one knows. Even healthy people don’t know it. So I try to enjoy these months of healthiness and never ever lose the hope that they will become years…please never give up keep on the fight.

PS. My next PET scan will be in January, I hope and trust that it will be clear but if not… I will fight again. And please if you have questions or want to share something feel free to contact me.

Countrygirl3
Posts: 7
Joined: Dec 2010

This has been such a long and lonely road, since my hysterectomy and diagnosis of uterine carino sarcoma stage 3 in May of last year. Before that I bled all the time and had a difficult time going anywhere. Then in September it came back. So I had radiation, which was horrid, but it did stop the tumor from bleeding - now I just have a fowl smelling discharge. Laundry is an everyday affair for me. I guess it's a blessing in disquise, cuz it keeps me very busy. Now I'm a genuine kotex and rag expert, I've got my system down. Plus we had to move during my radiation, unfortunately a 2 story house. I'm up and down stairs all day . . . wears me out.

Just started chemo Monday and am feeling better now. Truly, I was petrified of what chemo would be like, especially after what I saw on you tube. I want to survive so badly so I can be here for my hubby, kids and their young ones. Doc wants me to do ct scan after my 2nd chemo, cuz there's 2 nodules on my lungs.

Wondering if any of you gals have had a bleeding tumor that went away and what it was like dealing with it.

Sphinx, I'm so glad that you are clear and pray you stay that way in January too

Alepu
Posts: 2
Joined: Aug 2013

Hi Nela!

I hope you are doing good, and that the worst part of yo ur life you left behind you! I read your mail, and really you had been trough the hell situation with all those complications... You are very strong person, and I beleive being decisive, commited and optimistic is the most important while fighting the cancer. My mum is diagnosed the same, MPNST few month ago. In Serbia doctors recommended chemotherapy, as well in the rest of the developed world (she had an operation of tumor in her left leg, above her knee on the medial side) It was 5x7cm. Since she had a liver operation seven years ago, cuting giant chemangiomas, she has like less than a half of the liver left. So, we concluded that chemo would be very difficult for her to receive, and in the most of sciantific articles there is no or just some results of chemo and radiation in the therapy of MPNST.

 

I would really like to talk to you, so you can write to me on aaaleksandra11@gmail.com, or find me in the facebook. I also want to tell you about some alternative ways of threatment. Best wishes!

cfox1995
Posts: 4
Joined: Mar 2011

Hope all is well.. I'm new to the site. You are not alone in this fight, my mom just underwent a craniotomy for LMS two weeks ago, she will be having radiation in a few weeks. here is her history:

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 are so right about cancer stripping away the body parts! She also had double scar tissue build up from having two abdominal surgies in the same area. Hope you are doing well!

Christine Iannuzzo
Posts: 3
Joined: Jan 2011

I had about the same. Not on gleeve but DTIC, you must have GIST? How are you doing these days?

legaleagle
Posts: 4
Joined: Aug 2013

Hi Marvusman,

I know that this is almost three years later, but I'm hoping that you are still in good spirits and health.  My husband was recently diagnosed with Leiomyosarcoma of the liver.  They removed an 11 cm tumor (they initially thought that it was FHCC, but after pathology realized what we were dealing with).  They have said that there are no mets, but are concerned that there may be some spread that they just can't see.  We have an appointment with a specialist at Duke and are also making plans to go to MD Anderson for a second opinion.  How are you doing?  How did the chemo work for you? 

LyndiD
Posts: 2
Joined: Feb 2012

My husband was diagnosed with stage 3 high grade MFH in his lateral deltoid July 2010. Following limb sparing surgury at UCLA by a sarcoma team and 33 radiation treatments, he participated in a clinical trial at Columbia University where he took valproic acid for 6 months with the intension of turning any high grade cells to low grade. Valproic acid is normally given as an anti seizure medication and very easily tolerated. My husband had no problems or side effects on the medication and continued his highly demanding job. We live in California, regular trips to New York were not originally accepted by our insurance, but we paid out of pocket, petitioned the company, they reversed their decision and repaid us.
Every 3 months he has CT of chest and MRI of shoulder, every 6 months he has PET of pelvic region. We are 18+ months out now and no signs of recurrance.
I would be happy to share more deatils if you are interested.

LyndiD
Posts: 2
Joined: Feb 2012

MFH and myxofibrosarcoma are considered to be the same diagnosis.

MyDadNeedsAMiracle's picture
MyDadNeedsAMiracle
Posts: 2
Joined: Jan 2013



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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

jenmessley
Posts: 8
Joined: Oct 2010

I had limb sparing (right thigh) surgury in 1976 along with radiation. Have full use of my leg with swelling and pain that does not hold me back. Just found a quarter size lump on my right arm. Was told it is just a fatty tumor after an MRI but know better than to stop with a local DR.
Jennie

survivor9yrs
Posts: 57
Joined: Oct 2009

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

Abbysgram
Posts: 3
Joined: Nov 2012

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

Abbysgram
Posts: 3
Joined: Nov 2012

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

Abbysgram
Posts: 3
Joined: Nov 2012

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

koolchick
Posts: 1
Joined: Nov 2010

I am a long term survivor. I was diagnosed with a synovial sarcoma in 1991 - when I was 13. I found the lump in my right abdominal wall. It was very rare back then and is an unusal place for a sarcoma of this type. I had the tumour removed. It was 4cm in diameter. i had radiotherapy every day after school for about 4-6 weeks. I had regular check ups for the next 10 years.

I am now 31 and perfectly healthy and have had no further problems. Other than the large scar on my abdomin and the large square where I had radiotherapy (which after 18 years has never been the same colour as my left healthy side of skin).

I can honestly say that it hasnt effected my life that much - other than I have never been confident to wear any midriff or bikini tops becasue of the scar and discolouration of my skin from the radiotherpay. I also try to live each day - as I know things could have been so different. Am very grateful I was one of the lucky ones.
xxx

saramschaper
Posts: 3
Joined: May 2012

Hi! I am very happy to hear that you have been cancer free for 18 years following a Synovial Sarcoma! My husband, who was 24 years old when diagnosed, was diagnosed in Sept 2011 with Synovial Sarcoma. His was also in his right abdominal wall! When he had his first surgery to biopsy the tumor, it was already about 8-9cm. Then after surgery, it quickly grew back, reaching to about 5cm. Then he had 18 weeks of aggressive chemotherapy, which shrunk the tumor. Then 6 weeks of intense radiation. Now, we are on the last stage of treatment, which will be surgery to remove the tumor. We are hoping and praying that the surgeon is able to get clean margins, that way the cancer hopefully doesn't come back!

It really makes me very hopeful after reading your post, because you have the same cancer my husband did, and in the same place. Your treatment plans were a little different, however still closely related. My husband is now 25 years old, and we hope to be able to say in 10 years that he is and has been cancer free. We are SO ready for this cancer to stop taking over our lives, so we can live again!

Thank you for sharing your story!

please respond back if you'd like!

Sara and Nick

saramschaper
Posts: 3
Joined: May 2012

Hi! I am very happy to hear that you have been cancer free for 18 years following a Synovial Sarcoma! My husband, who was 24 years old when diagnosed, was diagnosed in Sept 2011 with Synovial Sarcoma. His was also in his right abdominal wall! When he had his first surgery to biopsy the tumor, it was already about 8-9cm. Then after surgery, it quickly grew back, reaching to about 5cm. Then he had 18 weeks of aggressive chemotherapy, which shrunk the tumor. Then 6 weeks of intense radiation. Now, we are on the last stage of treatment, which will be surgery to remove the tumor. We are hoping and praying that the surgeon is able to get clean margins, that way the cancer hopefully doesn't come back!

It really makes me very hopeful after reading your post, because you have the same cancer my husband did, and in the same place. Your treatment plans were a little different, however still closely related. My husband is now 25 years old, and we hope to be able to say in 10 years that he is and has been cancer free. We are SO ready for this cancer to stop taking over our lives, so we can live again!

Thank you for sharing your story!

please respond back if you'd like!

Sara and Nick

eddiewood's picture
eddiewood
Posts: 2
Joined: Dec 2010

Diagnosed in second grade at age 7 with Rhabdo. Softball sized tumor originated in my prostate and 22 golf ball sized tumors spread to my lungs. I started a blog about my time with cancer this month for me and my kids to read. My mom kept a daily journal of the battle and I am using that and what I remember. If you are interested the link is below.

http://www.instinctive-affection.blogspot.com/

tatteredtutu
Posts: 1
Joined: Dec 2010

I had rhabdomyosarcoma in 1984. At that time, not much was known about curing rhabdomyosarcoma. My doctors gave me treatments found at large universities and I survied. I have been married for 30 years and have 3 children. I am so lucky.

My maintenance isn't over. I need to have surgeries to keep my face from falling off, but it is an annoyance at this point.

You can do it. Doctors don't give people much hope with these kinds of cancers. I wasn't given any hope to survive a year. But I did.

Finally about 5 years ago I had a doctor tell me I would not have a reoccurance! Well thank you. I was 19 years beyond my treatments.

Just goes to show you the most cautious news comes from the doctors.

Blessings to you all, have a strong faith and resolve and you can make it.

bevans1942
Posts: 14
Joined: Sep 2010

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.

daniel711731
Posts: 3
Joined: Mar 2013

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

hope_in_Decatur
Posts: 1
Joined: Feb 2011

Hello. I've never even been on a message board before, so this is new to me. I am a 47 year old mother of 2 and a 14 year survivor of soft tissue sarcoma. The large and aggressive tumor was in my pelvis. I was treated with radiation and radical surgery at MD Anderson. My son was only a year old when I was diagnosed and I was fortunate enough to have another child 4 years after my treatment. Have had to have several more reconstructive surgeries (latest one in Nov 2010) to repair damage due to the cancer treatment but otherwise have been well.

JenniiR
Posts: 1
Joined: Feb 2011

In 1961 I had a second and final surgery for Fibrosarcoma. At the time, it had an extremely small cure rate. But, I am here 50 years later. I hope this brings hope to you all.

Joanne 1225
Posts: 2
Joined: Feb 2011

I too am a 25 yr survivor...from fibrosarcoma. Never met anyone else who had it. We are blessed

Fata79
Posts: 7
Joined: Sep 2012

My 33 years old boyfriend is fighting fibrosarcoma since last year. Currently back after his surgery on his pelvis in october 2011,and two spots were also found in is lungs.
Whats your story?
What kind of treatment did you received?

Fata79
Posts: 7
Joined: Sep 2012

My 33 years old boyfriend is fighting fibrosarcoma since last year. Currently back after his surgery on his pelvis in october 2011,and two spots were also found in is lungs.
Whats your story?
What kind of treatment did you received?

Fata79
Posts: 7
Joined: Sep 2012

My 33 years old boyfriend is fighting fibrosarcoma since last year.Surgery in october 2011 on his pelvis and now back wiht two spots on his lungs.
what s your story?
What kind of treatment did you received?

Joanne 1225
Posts: 2
Joined: Feb 2011

I too am a 25 yr survivor...from fibrosarcoma. Never met anyone else who had it. We are blessed

darmasine
Posts: 2
Joined: Mar 2011

You are definitely blessed. Please let us know what treatment you were on and lifestyle, diet etc.

cfox1995
Posts: 4
Joined: Mar 2011

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

dabrewsky's picture
dabrewsky
Posts: 4
Joined: Feb 2013

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

docsero
Posts: 1
Joined: Apr 2011

hi there,

I am glad to hear you are doing well. i was wondering if you could tell me the megace dosage that you used? I am considering this treatment for a young patient with ewing's sarcoma that is progresterone rec3eptor positive.

thank you.

Dr. Kim

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