LONG TERM SARCOMA SURVIVORS WANTED

ronny said:

metasis to lungs
Hi, After my first treatment in 1999, the Ewings came back in my lungs in 2003. I had chemo and surgery to remove the spots on my lungs. On the ct scan it showed 8 spots, during surgery they found only 3. 2 were dead from chemo and there was 1 live by my heart. Then in 2006 it returned again the chemo no longer worked. My Dr. in MI sent me to San Antonio to meet with Dr. Anthony Tolcher about starting a new clinical trial called amg 479. I had some lympe nodes involved and spots on the lungs. They started treatment and in 8 days the tumors shrank by 60%. After 8 weeks the pet scan went silent. I still fly to Texas every 3 weeks and get the drug. It is given in my port and has had no major sideeffects. It is a human monocolonal antibody therapy and just attacks the cancer cells. I have been on it since Dec. of 06.
Ron

hi ronny,my name is nina, i

hi ronny,my name is nina, i was inspired by your story.My 13 year old son had recurrence of ewing sarcoma after only 1year and half,We live in Kuwait.he had treatment at dana farber and children hosp in boston last 2011 and just find out yesterday about this sad news of reccurence.How are you doing now? is there any latest developent? are still on amg 479? can you pls tell me more about how it work.i appreciate your help and immediate response before we go to anther treatment.as for now now theres no plan yet but to return to dana farber.can you tell me the name of the hospital were you are treating? sorry for my english im not so good at it.thx a lot.you can email me at  marianina0767@yahoo.com     pls... if anyone can relate with this .i'll be happy and appreciate your help.

 

worried mom. 

nina

 

 

 

ali_beth said:

I'm almost to my 5 yr.
I'm almost to my 5 yr. remission mark. I am a survivor of osteo genic sarcoma. I had it 5 times.

5 years remmision

HI. could you give us some details of your story with osteosarcoma.

My husband is currently fighting it for the fifth time and he is kind of dessprated.

He has been sick for 7 years (come and go). Did you have ck or just ressection?

any detail you can give will help a lot

thank you very much

Marvusman said:

2 surgeries, almost 2 years
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.

How Are You Doing??

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? 

Sphinx said:

malignant peripheral nerve sheath sarcoma
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.

MPNST

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!

Fully_Present said:

3 YEAR Survivor of Uterine Leiomyosarcoma
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.

Nearly 5 Year Survivor of Uterine Leiomyosarcoma

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!

Cancer survivor

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

looking for others with Langerhans Cell Sarcoma

Hi I am not yet a long termer as I am only in remission for three years now. I have come here looking for others with LCS who are in remission for longer.

Extraskeletal osteosarcoma survival

I would like to hear from someone who has survived extraskeletal osteosarcoma for a long period of time.my brother has been diagnosed with the same recently .unfortunately his disease has metastasized to lungs .I am really very depressed and looking for hope.His doctors have described his condition as relatively less chemo sensitive nonetheless they are giving him 4 rounds of chemotherapy before surgery of primary tumor and lungs mets. He is only 32 and has a positive attitude for his future. If anyone could please respond I would be really grateful. If not extraskeletal osteosarcoma then maybe some other sarcoma.it will help me immensely

rmandarigma said:

4 years now

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.

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.

MFH Sarcoma

In my 6th year now, male, currently 45 years' old. Like all of you, had a real rough go of it -- over 70 zaps of radiation and was in a quasi-trial for Sutent -- took 212 of those pills and had over 100 hrs of resectioning the entire left-side of my body (Stage IV) -- presented in the axila and trunk, soft tissue mets to arm (able to save) and lymphatic system. Treated at Emory in Atlanta -- recommended highly. 

 

Like to tell you all that it was some kind of distant memory, but still greatly suffer both physically (anatomy of left-side essentially "re-created"...chronic differred pain) and mentally -- suffer from severe depression as a result of my journey and still trying to regain my life back. For me, the ripple effect post-cancer was pretty bad. I was at an age where most aren't used to dealing with death...everyone rallied around me at first, then visits became phone calls...phone calls were downgraded to emails...then perhaps a text or two -- then nothing. Know I shouldn't, but carry a good bit of anger rocks in my bag as a result. Envy those who can just forgive.

 

Would also like to say that I "took it" like a brave soul, but that would be a lie -- honestly embarassed the way I handled the ordeal -- died once from sepsis, but they brough me back (bad infection after a resection surgery) after 24 seconds of being, well, dead. My kids were old enough just to remember the "uglies" and convincing them (without lying) that dad will be around for a good while isn't always easy. If it came back, I really don't know if I would pursue treatment -- some things are worse than death.

 

But one quite wonderful thing did result from my Sarcoma experience -- there's no better person that someone who is in the trenches with you and/or survivors. And I do realize the above-listed hurts mostly me and I am working on becoming a better "post-cancer" person -- but do harbor a great bit of anger for the the cliche "why-me?" question. Not proud of it in the least, but has gotten much better and I am committed to continually working on it. Ultimate irony is that I was a Hospice Councellor for over a decade...just need to follow my own advice. Be well folks and I wish you, with much sincerity, the very best on your journey and road to recovery. Thanks for reading. BDC