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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.

DeniceH's picture
DeniceH
Posts: 11
Joined: Sep 2009

2 year survivor! Yayayay!! :)

theodora_d
Posts: 1
Joined: Aug 2011

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

grammy05
Posts: 5
Joined: Oct 2011

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.

franny
Posts: 3
Joined: May 2011

This June I celebrate 15 years in remission!!! And yes I still have leg pain but hey I have my life!!

franny
Posts: 3
Joined: May 2011

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

crazy98
Posts: 25
Joined: Dec 2004

How is your leg holding up now? Did you have limb salvage?

2blessed4stress
Posts: 6
Joined: Jul 2009

Hello. I am a long time survivor of Rhabdomysarcoma. I had it when I was only 3 yrs old and now I am 28. The cancer was on my bladder and thankfully just thentumor was removed. Even though I am well now,this have been a very long long road. Right now I am recovering from a surgery and thankfully it didn't have nothing to do with cancer but I can say that this have been a rough,emotional,experience. Over the years I have had many surgerys. I recently lost count. Every other year I have had a surgery or lik the last 2 years I hv had them every year. Again the wasn't related to cancer as far as I know but it did result in me losing my ovaries and going through menopause at a early age. When I was around 16 my left ovary was removed because of a cyst, then following that ia had a lump in my breast that had to be removed as well. Since my surgery in 1986 to hv the tumor removed I have not had any more cancer,although I still have had many surgeries and on going problems due to the extensive amount of chemotherapy n radiation i took. Granted this have been a rough ride but I am blessed and I am thankful and I am always willing to share my stories with anyone that can relate or possibly had or have the same problems I had

allysmommy
Posts: 2
Joined: May 2011

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.

Reba2
Posts: 3
Joined: May 2012

Hi Allysmommy

I was just diagnosed by this few weeks ago, the first surgery they did not suspect anything baut pathalogy came back as high grade, so last week i had second surgery to get clean margins now waiting for my treatment options. thank you and everyone one else for encouraging stories as it has been very difficult.. can you tell me about the radiation? Thanks

carolfrommn
Posts: 1
Joined: Jun 2011

1967, right leg amputated
1068, 1969 and 1970 surgery for mets to the lungs
1996 breast cancer, right breast hacked off.

I now have RA.

I have survived, but life has been very very tough. I am in my 50's now and I know I should be so grateful....but I have had a lifetime of fighting cancer....

I know people do not want to hear depression stories...so i wont go there.

Wouldnt you think after 40 plus years we would be a bit closer to finding a cure for this horrific disease?

DeniceH's picture
DeniceH
Posts: 11
Joined: Sep 2009

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!

Lizziebugsmama
Posts: 1
Joined: Jun 2011

What a great thread! I am a eight year survivor of a follicular dendritic cell sarcoma. Originally diagnosed in August 2002, had a five year remission. Recurrences in 2007, 2009, 2010 treated surgically and with four different chemos. To everyone's surprise, I had my daughter during my remission. My surgical oncologist gave me ten years, and I'm determined to beat that prediction.

Chestah's picture
Chestah
Posts: 3
Joined: Jun 2011

Diag when I was 18... been clear of Embryonal Rhabdomyosarcoma for about 23 years now. Actually this year (2011) is my 25th anniversary I guess from diagnosis. Woo-hoo! Um.. party of one? Had high dose chemo, aggressive surgery & I-125 Seed implants. Now have the long term side effects but I work full time & have a normal life.

But ain't it great to say "I survived"?

hereward
Posts: 1
Joined: Aug 2011

I have been moved to join this society having read the relatively large number afflicted with a chrondosarcoma. Their stories resonate clearly with me and I can understand only too clearly the fear and despair experienced. I hope my own story might give anyone long term hope.
Let me start by telling you that I am due to see the consultant next Wednesday when I expect to be given a date for surgery followed by radiography / proton beam treatment. However!!!!!!
My own case dates back to 1990 when 1 was approaching 45 years old. After a period in hospital I was diagnosed with what I now know to be chrondosarcosa. I underwent a 14 hour operation by two brilliant surgeons who it turns out were at the cutting edge of this procedure. Since then I have undergone MRI scans on an annual basis. Till the last one earlier this year I have come away with a clean bill of health, that is 21 years since the original operation. I have seen my two children grow up and pass into adulthood, they are 34 and 32 now. I've even drawn my pension.
I hope this may give you hope at what for me once again a pretty awful time. Remember there are many people rooting for you. Stay strong

atcdork
Posts: 1
Joined: Sep 2011

I'm not a "long term" survivor yet. I was diagnosed with a Malignant Fibrosis Histiocitoma in my right thigh two years ago.
Went to MD Anderson. Got chemo, radiation, and surgery. Still getting checkups every three months. So far, so good.

Linsay
Posts: 3
Joined: Oct 2011

Let's see, where to begin. My name is Linsay and I'm 25 yrs old. I was diagnosed at the age of 22. Below is the order of my story.

May-June 2007: Went off to basic training and technical school(21yrs old). June to July time frame i notice my stomach was sore in a spot. I figured I had ran into something because I am quite clumsy.

Sept 2007: Feel a lump in my lower abdomen. It is very small and I figure it was nothing and would go away.

Oct-Nov 2007: Lump grew alot in size.

Dec 2007: I finally go to the hospital because it starts hurting really bad (22yrs old). I can barely do push-ups or sit-ups and if anything hits me in teh stomach I'm doubled over in pain. I get a CT done and an ultrasound. The ER doc said he didn't see anythign although you could physically see and feel the lump. I go back to base and I get a call to come back in that he made a mistake and he sees something. He doesn't know what it is and gives mea card to a general surgeon. I decide to wait to see a doctor until I get to my new base in January 2008.

Jan 20-08: I get an appointment with a general surgeon who believe the lump to be a fatty cyst.

Mar 2008: The lump is removed.
April 2008: The doctor calls me to his office and tells me it's cancer. He refers me to UNC Cancer Center, NC. I meet my oncologist and he tells me that it's a sarcoma. A synovial cell sarcoma to be exact. It is between a grade 2 and 3. I get scheduled for surgery.

May 2008: I have surgery. The doctor was going to give me radiation, but decided against it due to it killing my ovaries. He said he was confident enough that he got it all that I would not need it unless it came back.

I recieved quarterly check ups and scans every six months for two years. Now I see the doctor every 6 months and scans once a year. I am currently having problems getting an appointment through the military to a sarcoma specialist. They tried sending me to a hematologist. REALLY?! I'm fighting that one. They drug me away from the area I lived in and my oncologist in promise of continuing my treatment, only to be lazy about it. Anyways, it's just frustrating.

So far I have been in remission for 3 years. I have a lump in my wrist that has started to be quite painful so I am going to go get that checked out soon. I was always told it was a ganglion cyst, but after reading these forums, I think I am on the safer side to get it checked.(So many people misdiagnosed for years) I am 25 years old and know that I will always have this in teh back of my mind for the rest of my life. I hope I never have a reoccurence.

saramschaper
Posts: 3
Joined: May 2012

Hello! It is very nice to hear you are doing so well after your diagnoses! My husband has been going through something very similar to you. He was 23 years old when he noticed a very small lump on the right side of his stomach. He thought nothing of it, and didn't go see a doctor until a few months later. It hadnt really grown much, and the first Doc he saw told him it was more than likely a lipoma. So, my husband, who didnt like doctors anyways, kept on living as normal. Shortly after he turned 24 years old, I forced him to go see another doctor, because I noticed that the tumor had grown quite a bit in the past several months. Again, after two more doctors, they BOTH thought lipoma. My husband never got around to doing a biopsy, like ONE doctor suggested. Instead, he saw yet another surgeon in the Summer of 2011, that told him this could be a Sarcoma, and she needed to remove it for biopsy ASAP. This scared the CRAP out of us, so we were in for surgery literally a week later.

We got the phone call that it was Synovial Cell Sarcoma, and she referred us to luckily, the Sarcoma specialists that are located in our hometown, Atlanta, GA. My husband started treatment about one short month after being diagnosed. Then my husband started aggressive chemotherapy, then 6 weeks of radiation. Now we are to the point where his final surgery to remove the tumor is just a week away.

I am so hopeful now that I have read your story. It makes me happy to see great success with this horrible, rare disease. We cannot WAIT to say that my husband has been in remission for 3 years. That seems like SO far away. We will just continue to hope and pray with everything we have!

Thank you for your story!!

-sara and nick

wilee
Posts: 2
Joined: Oct 2011

I completed my treatment three months ago and am starting to get my energy and strength back, as well as my hair. It was a hellish 6 months of treatment and surgery but I am grateful for the support and help I received from my cancer treatment team as well as my family/friends. It is so true that a support system is vital to get through cancer treatment. Honestly I am still struggling but am on the road to recovery.

ZiegenSauger
Posts: 5
Joined: Apr 2011

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

LisaMG
Posts: 1
Joined: Oct 2011

Hi there, Good news! There is life after sarcomas. I was diagnosed 16 years ago with a fibrosarcoma- not good! I was told I had about 2 years to live. Whatever!Two years did not work with my schedule. I was engaged to be married and had a lot I wanted to accomplish. Chemo, radiation, and surgery did the trick. Cured- for 3 years :) Then.....right before my daughter's first birthday I started having another pain, this time in my jaw. On my birthday, I was diagnosed with an ostersarcoma. At first they thought it was a met, but later concluded that it was another primary. THat was 12 years ago. Since then, I have been living free of cancer!

Hope that puts some giddy-up in your step :)

SALG1
Posts: 1
Joined: Jan 2012

Please let me know how are you doing now ?

Brucie
Posts: 3
Joined: Feb 2012

Hi My name is Peter Branker and I am from Northern Ireland. I am 40 years of age and have had both Rhadoymia Sarcoma and Synovial Sarcoma. Apologies for any spelling errors. I first was diagnosed with Rhadoymia Sarcoma when I was 13 and had Chemo every 3 weeks for 2 1/2 years. I also had Radiotherapy which had to be directed through my eye and as a result I now have had my eye removed and currently wear a painted lense. Thankfully the treatment was successful and I never had any further treatment relating to this cancer.

When I was 18 I also was diagnosed with Synovial Sarcoma and had to have my left leg amputated below the knee but no other treatment.

Although I have some problems with small areas of my face now which I have to look after as a result of the radiotherapy I have had no treatment for 22 years approximately so I have to say I can't be any happier.

If you would like to know anything more about my battle with cancer please feel free to send me a message as I would be only too willing to chat.

Hope all is well with you.

jblumer
Posts: 1
Joined: Feb 2012

I was diagnosed with a sarcoma in June of 2011. The tumor was in my back and was 11 cm. After surgery, chemo and radiation I am doing much better. It has almost been one year. Every three months I get a chest CT Scan. I am very confident I can beat this disease but the scans can be scary. I would like to hear other stories to give me hope. My cancer was a stage III and was treated in Pittsburgh.

davehull
Posts: 8
Joined: Aug 2009

I'm not sure 3 years counts as long term - but I think my story is a good one and am happy to connect with anyone else out there newly diagnosed or with a longer term perpsective. I was diagnosed with a 5cm Stage 3, high grade MPNST on my left sciatic nerve in July '09. I had a total of 24 weeks of chemo, 30 days of radiation and 2 surgeries - but I've been cancer free for 2 years and all my scans continue to be clean. I got my treatments and surgeries at U Penn and Memorial Sloan Kettering.

I lost my left sciatic nerve which has some complications of its own (loss of function from the knee down in my left leg etc) but I'm walking with the help of a great prosthetic brace and leading a more or less normal life. Best wishes to everyone else!

Alepu
Posts: 2
Joined: Aug 2013

I am happy to hear that you are doing well!

My mum is diagnosed with MPNST two month ago. We got diagnosis almost one month after surgery. Tumor was 7x5,5x4 cm, and it was in medial side of her left leg, above the knee, the same stage as yours 3, grade 3, and I don't really know to which nerv it was attached. She didn't do radiation, doctors recomment chemo, bus since she has less than half of the liver left due to the surgery she had seven years ago (giant chemangioma, bening tumors) full chemotherapy would be very risky.

We are in Mexico, at the clinic where she receives alternative therapy in combination with mild chemo. 

Actually, in two month after the surgery, tumor grows back, I guess they didn't clean it well, they left positive margins, so it regrowth, but you gave me the hope.

Please, write to me back, I would really appreciate to hear from you soon, my email address is aaaleksandra11@gmail.com or just write to me phone number or however I can find you.

Stay well! All the best!

A.

maelje
Posts: 1
Joined: Aug 2012

I was diagnosed with myxoid liposarcoma in my right hamstring in August 2009. I had radiation to that site in September and October 2009, followed by surgery in November. I did absolutely fine till September 2013, when more cancer -- same kind -- was found in my scalp, left chest wall, several vertebrae and right hipbone. After six months of therapies that included chemotheraphy (ifosfamide/doxirubicin) and conventional radiation, all tumors were eradicated except the one in the left chest wall. I had Cyberknife, three treatments, to that area. I got results of scan this morning: That tumor has shrunk by 1/3 to 1/2 of its previous volume.

Unfortunately, the scans also showed two new spots in my right rib cage near my spine. However, these tumors are very small -- about one centimeter each. My radiation oncologist is consulting with his team but thinks these can be treated with Cyberknife. Fortunately, they are much smaller than any of the other tumors I've had.

So it's been three years since my initial diagnosis, and unfortunately the cancer recurred in September of last year and I have these new spots, but my doctors are still quite positive. In my case, they say, this is clearly a chronic disease but so far we are finding ways to deal with it. I would love to go into remission but if that's not realistic, then I hope to have many more years and good quality of life.

Phoenix108
Posts: 2
Joined: Mar 2012

I am so glad that I happened upon this posting. I was just mentioning that I wanted to see the Survivors of this disease. I need reassurance that it can get better!! I found the tumor last February in my thigh, but was misdiagnosed. I was not diagnosed until April 2011. Fortunatly after my second surgery they were able to declare me Cancer Free in May of 2011. I went through six rounds of chemo and 30 radiation treatments which ended on Dec. 28th 2011. I was able to start the new year with my treatments complete! I have my third Pet/CT scan scheduled for this Tuesday and I am so nervous!
I can only pray that I one day I will make it to as many years as some of you have. Something to look forward to!

Fully_Present's picture
Fully_Present
Posts: 5
Joined: Apr 2012

I was diagnosed with ULMS following a routine hysterectomy. I had a follow up surgery to make sure nothing was left. I had no chemo or radiation. I have followed a strict program to build my immune system. So far I have had no recurrence of the disease.

cinb216
Posts: 1
Joined: Sep 2012

That is fantastic. It really gives me hope. I was diagnosed following a hysterectomy also and I am currently undergoing radiation treatment. After radiation I will try anti-hormone therapy because my tumor tested positive for hormone receptors. I have read a lot about following a strict diet and exercise program to build the immune system up and plan to pursue that.

Blessings2U's picture
Blessings2U
Posts: 6
Joined: Aug 2013

I had surgery to remove Stage III ULMS, but no chemo or radiation therapies. There was no evidence of disease. I began a radical change of lifestyle to get rid of stress and learn about natural healing modalities. My doctor says that it is "Remarkable!" that I am alive and so vibrantly healthy. I started a Facebook page to support women who are looking for ways to support their immune systems. Look for my blog at Utereine Leiomyosarcoma - Integrative and Natural Treatments. Blessings!

campsie46
Posts: 6
Joined: Jun 2012

Hi

My names Krenn from Scotland. After years of a persistent lump on elbow and Docs telling me nothing to woory about I was eventually diagnosed with Synovial sarcoma. I had the whole area removed and resumed normal function of elbow. Didnt take any further treatment and 10 years later still fine. I have been worried about a swelling in back of knee which apparently can be the same thing. I am going for tests next week, fingers crossed!!!

xxxx

AKropp
Posts: 1
Joined: Jun 2012

I am a 7 year survivor of chondrosarcoma of the right femur. I had surgey to remove most of my femur and some surrounding soft tissue and replaced with a steel prosthesis. Other than a limp and a nice big scar I am doing great. I was treated at the University of Miami, and while not a certified sarcoma center - they are experts and saved my life!

Colleen28
Posts: 1
Joined: Jul 2012

Hello everyone,
Many years ago, I was diagnosed with right axillary spindle cell sarcoma. I found the tumor in 1991 and had the surgery relatively quickly thereafter. The tumor was visibly growing and, at that time, the surgeons thought I would have to have most of my rib cage replaced with artificial ones because the tumor was thought to have invaded the chest cavity. Luckily, surgeons found that although the tumor was quite large (told size of "grapefruit") it remained encapsulated. I had just finished college and must admit my ignorance of spindle cell sarcoma was my bliss. I just did not have access to information (no internet at that time) concerning spindle cell sarcoma and did not realize how scared I should have been.
It took many months to definitively diagnose the tumor as spindle cell and I was finally diagnosed by Brigham and Women's Hospital with input from Mayo Clinic. The cancer diagnosis is something I have lived with for most of my life, and I am not sure why I never sought out survivor websites until now. I guess I had lived with the knowledge for so long pre-internet that it became almost like it happened to another person.
The stories I read, however, broke my heart and I realize how truly fortunate I was. When I saw this thread, I wanted to write to give others hope that there are some of us, at least me, that have survived and have survived without the constant fear and worry. (again, ignorance was bliss). I have lived 24 years with few complications and have gone on to have children starting at the age of 40. I know my story is highly unusual, but my hope is that it gives someone comfort that there are "miracles" with this disease.

wwwsanti
Posts: 1
Joined: Sep 2010

GO IT AT 17, SURGERY RADIATION AND QUIMO AT 17, 18 YEARS OLD

3 LUNG METASTASIS 20 YEARS LATER, HAVE 2 SURGERYS NO RAD, NO QUIMO,

10 YEAR LATER ANOTHER LUNG METASTASIS HAVE SURGERY NO RAD, NO QUIMO,

CLEAN CAT LAST 3 YEARS.

Debrns
Posts: 1
Joined: Nov 2012

I have been diagnosed with High Grade Pleomorpic Undifferentiated Sarcoma. In July i had surgery to remove most of the left hamstring muscle as the tumor was growing within and very closely to the sciatic nerve. The final size was 10cm x 12cm x 17cm
I did a total of 38 Radiation sessions and then did a CT scan only to find that although the leg area was clean there are multiple pulmonary masses present in my lungs and three being large 13mm, 16mm, and 22mm ... i have started a range of Chemo sessions and the last being in December 12, i will then have to go for a CT Scan again. Being 48 years old i am mature enough to handle the negative and positive of this disease. In saying this i have searched the net for answers and can’t find links of forums that can answer the following questions, i guess i would like to invite anyone who can answer the following questions to respond.
I would like to get answers on statistics;
How often does the chemo work?
What is the prognoses if it does not work? (my doc says 6mnts)
How many survivors got the cancer back?

@sweet1979's picture
@sweet1979
Posts: 4
Joined: Sep 2014

Ur story is amazing .many people Wil find hope in ur story

Shorti4727
Posts: 1
Joined: Nov 2012

I'm a 12 yr osteosarcoma survivor !!

learningrichard's picture
learningrichard
Posts: 1
Joined: Jan 2013

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
Posts: 1
Joined: Feb 2013

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

legaleagle
Posts: 4
Joined: Aug 2013

lvfemma,

I know that this is several months later, but I pray that you are doing well.  How are you??

TheFilmDoctor
Posts: 1
Joined: Feb 2013

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

 

Rington
Posts: 1
Joined: Feb 2013

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.

terrypris
Posts: 4
Joined: Mar 2013

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

grandma25
Posts: 1
Joined: Mar 2013

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 .

 

 

terrypris
Posts: 4
Joined: Mar 2013

 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.              

rmandarigma
Posts: 2
Joined: Apr 2013

I noticed a lump in my leg the size of a pea in 2004.  I was not diagnosed until 2009 even after i went to the docs many times for it.  They said I had a fat deposit and not to   worry.  Since I deployed to afghanistan for 16 months and trained for Army special operations.  It wasn't till i got to my team and the team medic saw it and by then it grew tremendously.I had a tumor the size of a softball taken out of my right thigh along with some muscle in OCT 2009.    I was diagnosed with extra-skeletal osteo sarcoma.  At this time the doc said to come up with a five year plan.  Since then i've done radiation, 7 rounds of chemo, and three lung surgeries since METS in Feb 2012.  Awaiting a scan next week and visit with doc the following week.  After my last visit with him things seem a little more serious.  He expects multiple nodules to appear.  My last surgery was last week of feb on my right lung where they removed 13 nodules and in Nov they removed 11 from the left lung.  If multiple come back he said maybe more chemo whlch is my worst fear cause i have a bad time with it.  if only few come back we will leave them and monitor.  But he used words like untreatable and we will know more after the scan.  I am very scared but still fighting.  i am a single dad of four little ones ages 7-3.  Just medically retired from the Army after 12 years and dedicating all my time to the kids and treatment.  I want to spend some time helping kids with cancer and when i see my doc it will determine when i can do so.  The doc said things can happen fast or slow.  But either way my life could possibly be cut short.  I will not let it get me that easy.  I conitnue to work out, eat right and study everything i can about this unforgiving disease.  I owe it to my kids, family and friends to do the best i can at beating this.  Its been almost four years and i plan on being here till my kids have kids.  Any advice on trial drugs or other treatment is always welcome and helpful.  Its wonderful to hear of the survivor stories so keep em coming.  Its a nice break from hearing a majority of horror stories of this so called incurable cancer.  God bless you all.

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@sweet1979
Posts: 4
Joined: Sep 2014

Really very sorry to hear about ur condition .my brother has recently been diagnosed with extraskeletal osteosarcoma with mets to lungs.he is a young man of 32 years.I am really scared for his life .I hate this disease and wonder why enough research has not been done to find some cure for this. How are u doing these days.kindly update on ur condition .I am praying for u.

boney76
Posts: 1
Joined: Aug 2013

Had limb spareing surgery in may 2005 remved 40 percent of quad muscle. Hadlarge field radiatin therapy always had swelling of lower leg due to lypmph system. wear compression hose, and some tightness when bending. Am 8 years clean. But for past year have had severe scar tissue pain and bonepain. checking for radiation damage to femur ,have atrophy and fibrosis of remaining muscle. has anyone experience long term radiation damage? am very thankful found it stage 1 b myxoidfibro sarcoma

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lpr265
Posts: 1
Joined: Jun 2014

I am a Survivor of Ewing sarcoma and neuroblastoma for 49 years, completely 100 percent cancer Free of Ewing sarcoma, next year 50 years! Had it at age 5 in 1965. The surgery was experimental and also in medical journals. 

This is how Ewing's Sarcoma came about:

I was 5 years old when I went shopping with my parents for our first black and white tv when I wandered off on my own to the where the delivery trucks are loaded for delivery, when I thought I was superkid and tried to fly off the ledge and instead of flying, I landed on my back and ended up breaking it.  The ambulance took me to the hospital when they started to test and found I had Neuroblastoma/Ewing's Sarcoma.

The Dr. put his license on the line and believed in an experimental surgery that cured me 100%.  He almost got kicked out of the hospital and almost lost his license, but he believed in his procedure.  Through chemotherapy and radiation my Dr. cured me.  He ended up keeping his license.

As a result, I was unable to have kids because of the radiation and chemotherapy.  

 1965 Ewing's Sarcoma/neuroblastoma- 100% percent cured!

 1982 Scoliosis-54% percent, and surgery with 1 steel rod. Body cast and body brace.

 1984 Broke steel rod and had to go through another surgery with 2 steel rods inserted. Body cast and body brace.

 1997 steel rods over time rubbed against my discs and went through back surgery to have a bak cage inserted. 

Today, I am happily married to the man of my dreams for 24 years, next year, will be married for 25 years after leaving a man who verbally and physically abused me.  Moved from Florida to Kentucky and "left a nightmare and found a dream"!!  Fate.

Next year I want to celebrate by doing something really big! 50 years!!

Today, I am the luckiest woman alive!

 

Lesli

@sweet1979's picture
@sweet1979
Posts: 4
Joined: Sep 2014

U have really been very courageous to fight it like this .ur life is an inspiration to those fighting this deadly disease.my best wishes for ur healthy and happy future.

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