Cancer Survivors Network

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

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

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

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

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

thanks!

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

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?.

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

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!

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!

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.

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!!

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.

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 ?

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

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.

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

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?

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.

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

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?

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

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

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.

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

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.

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!

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.

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

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.

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 ass. 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.

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.

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.

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

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

Wonderful story gives us all courage and hope Thank you

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.

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

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.

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

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

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.

Awesome!! You give us all hope.

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.

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

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

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?

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!

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

my comments "posted" twice the same thing ??

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

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

i am 56 yrs old in the dallas area

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:))

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

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 .

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

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

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.

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.

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.

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

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

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!!!

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!

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

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.

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.

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.

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.

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

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!

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

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.

MFH and myxofibrosarcoma are considered to be the same diagnosis.

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

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

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

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

Denise hi,

this is great news. I am so happy for you. My brother was diagnosed with undifferentiated pleomorphic sarcoma grade 3. He started combination chemotherapy with Ifosfamide plus doxorubicin. Do you care to chat a little bit more? I would like to know a little bit more about your medical history and your treatment. Also, the facility you were treated. You can email me at theodora_d@yahoo.com.

I am looking forward hearing from you.

Regards,
Theodora

Thank you Denise!!! I have been looking for anyone who has survived a pleomorphic liposarcoma with just surgery and radiation. I had a radical resection of my shoulder where the tumor was located, and now radiation for 7 wks. (Tumor was 5.2cm and very aggressive, and high grade, also told was stage 3) CT has not shown the cancer anywhere else, yet. My GP doctor is pushing me to get chemo.....but there is no evidence it will work. Possibly, a 0 to 12% better chance for survival. I had decided to nix the chemo, until she talked to me. I am soooooo Happy for You!!!! Please keep me posted.

I'm from Mi and my surgeon is Dr. Ronald Irwin, he is absolutely the best!!!

Not sure how to post on here. The stories of survival has blessed me. I was diagnosed in December with stage one but high grade liposarcoma. We did a wide excision and had clean margins. I then did six weeks of radiation and will follow up with scans. I have been blessed reading the stories because sometimes when you look up sarcoma you get scared out of your mind.

Wow, Carol! It does sound like you have had more than your share of cancer. No one on earth would blame you for feeling down when you've had such pain and struggle in your life. Still, I think it's amazing to me that you've not only beat it once but 3 times! Congratulations!

Hello Wilee and friends,

Even though each case is very individual and different from the others, I have been thru a great treatment (don't think it is easy, however don't EVER think it is impossible or hopeless, it is not).

We have not only one but several great treatments, great doctors and the difficulty today is when it does not work out fine at the end.

My case was terrible to start off and after a hellih 6 months of treatment and surgery like Wilee I am simply ok to continue with my life for many many years.

Just take it seriously from the beginning, have the correct center and doctors and the chances of cure are absolutely total.

Regards,

Paul from Florida