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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.

Mario13
Posts: 1
Joined: Jun 2014

I found out in 1993 I had ewings. It was on my left 3 ribs by my heart. I went through 3 high dose chemo treatments, then had surgery to remove 3 ribs 60% of my left lung and some other bones I'm that area. I was 10 at the time, so I really didn't understand what was goin on fully. After surgery I had 13 my treatments. I fought everyone. Today I am about to turn 32. Now days it's hard to find a doc because no one really wants to take on my case but I am happy and very optimistic. Everyone stay strong and fight. Good luck to everyone.

capetownlad
Posts: 1
Joined: Jul 2014

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.

JeanDane's picture
JeanDane
Posts: 2
Joined: May 2013

It's as if I never had it. I had no follow-up mri's. No follow-up Dr. check-ups. I take no medicine. Nothing.

I am doing great. I never think about it.

I wonder if this form of cancer can re-occur? I don't think so. But then I am not a doctor.

Don't listen to me.

(b-t-w I had surgery (only) for soft tisue sarcoma on my leg/ thigh).

Good luck to everyone!

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@sweet1979
Posts: 4
Joined: Sep 2014

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

BDC
Posts: 1
Joined: Oct 2014

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

 

 

bevans1942
Posts: 14
Joined: Sep 2010

I fully understand how you feel. I do not even discuss my cancer with any one anyone any more. 

#1 people do not believe you as they have never heard of that before.

#2 They do not believe you because they would like to ask you why you are still around,  I thought you were already dead.

#3 They are not really interested. 

#4 They can not get away from you fast enough, you might want a donation or be contagious. 

#5 They just do not care, or its not their problem.

#6 Yes your childern have the, I really thought you would die, and you are still here syndrome.

 

I am an Angiosarcoma survior and proud of the fact that I may have paved the way for someone else down the road. 

I am 71 years old and I have fought this devil for around 16 years, the last time was it for me.  

bevans1942
Posts: 14
Joined: Sep 2010

I have angiosarcoma. I have had this cancer for 18 years. It comes back 

every 5 to 7 years. The last time I was treated at the Moffitt Cancer Center In 

Tampa, Fl. They have a sarcoma clinic with a lot of talented Doctors, some of which 

have come from MD Anderson in Texas. The road has been long and hard, I have had many surgeries

as well as chemo. I curently take Votrient which has kept the devil at bay. Some people have not had

a lot of success with this but a lot have had exellent results. I have been taken this chemo pills (4) every day.

going on 4 years now. It all depends how far advanced your cancer is and how fast it is growing. 

I am prepared for it to come back again as it never goes away. Regards Bobbie 

alexjr
Posts: 1
Joined: Dec 2005

There's a Yahoo HPC (haemanteopericytoma) group.  I just finished sending them the following:

"I went for my tenth annual MRI at MSK last week, and once again, there was no sign of any new growth, or any growth in the estimated 5% that remained after the original (primary, encapsulated) tumor was removed from inside my spine.  They told me that I didn't have to make an appointment for next year -- I am officially free of the original HPC.

The tumor was so large that the outward pressure destroyed the backs of my T7 and T8 vertebrae, exposing the spinal column; they protected it by pulling over one of my trapezius muscles and anchoring it in that area.  I went through a several-years long period of discomfort and loss of a lot of some mobility; I learned from physical therapy to build up the relocated muscle with daily exercises, so aside from having to learn new ways to get up from the floor, I am about as mobile as somebody of 76 can reasonably expect to be. There are radiation burns that have never healed; I wear a diving shirt whenever I go swimming.  

It remains a mystery to my radiation oncologist as to why the outcome was so successful -- the only thing he is clear about is that my HPC was particularly non-aggressive and slow-growing, but maybe that had something to do with my immune system, or lifestyle, or genes, or where in my body it occurred.  He did say that in the future, it is likely that cancers will be classified by their genetic makeup, as opposed to the areas of the body where they most commonly occur."

 

Kattseven's picture
Kattseven
Posts: 1
Joined: Sep 2015

Dianosed with LMS in 2012. Still.here !Smile

bevroc1
Posts: 1
Joined: May 2015

Fairly large resectioning Friday the 13th 1999, which must have been a lucky day.  Had symptoms for over 2 years before getting diagnosed, lots of follow up but no signs of recurrence so far.   Residual problems are all from pretty intense radiation (5x/wk for 3 months).  No chemo (it apparently didn't work on my type).   Overall picture is that radiated area is getting older faster than the rest of me, causing some problems up and down the chain.  Helps that I am in fitness and medical field so doing pretty well.   Was wondering if anyone knows of any longterm studies for radiation and cancer survivors?

490000
Posts: 2
Joined: Aug 2017

First tumor at 16 year old  another at  17 biopsy edwing sarcoma 78-80 radiation and kimo .

2000 3 met in my lungs, surgery no kimo 2010 1 met in right lung surgery no kimo ,

2015 mets to lung to many to count  surgeon got 13 out out right lung, no kimo started protocell after leaving the hospital,

1mm cat scan show clear lungs last june 2017,  glory be to god.

490000
Posts: 2
Joined: Aug 2017

AT 16 FIRST TUMOR SURGERY 17 SECOND RADIATION AND QUIMO IN 78-80 METASTASIS IN LUGS 20 YEARS LATER ( 2000) SURGERY NO KIMO METASTASIS IN LUNG AGAIN IN 2010

SURGERY  AGAIN NO KIMO METASTASIS AGAIN IN 2015 13 TUMORS TAKING OUT DOCTOR SAY THEY WERE DOZENS .AFTER SURGERY STARTED PROTOCELL CLEAN SCAN 4 MONTH AGO.

GOING NEXT WEEK FOR SCAN.       Psalms  34:17

ccarnegie's picture
ccarnegie
Posts: 1
Joined: Sep 2017

I was diagnosed in July 2015 and had surgery for removal and now have a nuscle flap.  Not the best looking scar but i am alive! It has been two years and I am looking for survivors with similar stories.  I had radiation and now get scans everry 6 months.

carolann710
Posts: 8
Joined: Oct 2017

hi,

same here ......just diagnosed and getting ready for radiation......big scar ..not my worry though.....

Lindajo58
Posts: 2
Joined: Jul 2019

just looking for answers dionosed in oct 2018~ radiation and surgery 2/19 now working feeling good~ clear tests so far feeling hopeful although reading very dismal stories, anyone else with ccs

CSN_Bill's picture
CSN_Bill
Posts: 26
Joined: Sep 2016

Hi Lindajo58, 

 

I just wanted to point out that this is a very old forum, so you may want to try posting your questions in a new Forum Topic, the link for which can be foound towards the top. The last post to this thread was in 2017. New threads, or forum topics, can be seen easily by the rest of the members and you have a much better chance of someone seeing it and responding. 

 

Thank you, 

Bill

CSN Support Team

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