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Osteosarcoma in an adult

mocass
Posts: 1
Joined: Oct 2008

I was diagnosed in Feb 08 with an osteosarcoma in my chest (usually a cancer found in kids, not adults). The cantelope-size tumor started in my right ribs. I had surgery to remove the tumor (they also took my entire right lung, 3 ribs and some lymph nodes). I then went through 5 months of brutal chemo (cisplatin and adriamycin). I had my first post-chemo CT scan in Sept and got the all-clear. I am just looking for other adults out there who may have had a similar experience so we can talk about our treatment experience and life going forward. Are you out there? Thanks!!

msheida
Posts: 1
Joined: Sep 2007

Hi,
I`m sorry you had to deal with cancer and congratulation to your clear scan. I whoud like to recommend you this site witch is great. www.abc-survivors.net( Adult bone cancer survivors)

Love,Shida

maryangier
Posts: 1
Joined: Dec 2011

I have just been diagnosed today! I am a rape survivor at the hands of my slimy step dad for years and am in and out of mental health facilities. Not looking for sympathy but my plate is full as the effects of that trama have left me suicidal, paranoid and afraid of many things. This hit me like an atom bomb. I have a tumor beside my left knee and need so much support to get through this. PLEASE HELP ME THROUGH THIS DISASTER ! I have no friends in my life only doctors , I realize i need people to help me get through and due to my fear of people near me this is my only hope is to find support fron you all on the internet. PLEASE HELP !

cbsboone
Posts: 1
Joined: Jan 2011

I am a survivor and so are you. I found out I had Osteosarcoma in Sept, 2001 had surgery and they re-built my left knee, in 2009 a pin came out and I had surgery again. I am totally disabled due to my knee and now my right knee is going out on me. Please hang in there and don't give up. You can fight this cancer and I would be glad to talk to you anytime. God Bless you and let go and let God!!

ercc81
Posts: 1
Joined: Mar 2009

HELLO, IM SO GLAD YOU RECOVERED FROM CANCER!! MY DAD WAS DIAGNOSED DEC. 08 WITH OSTEOSARCOMA ON HIS RIGHT HIP BETWEEN PELVIS AND FEMUR HE IS 61 YEARS OLD, HE IS UNDER CHEMOTHERAPY RIGHT NOW BUT IS BEING TOO DAMAGING ON HIM BECAUSE THEY ARE USING SAME TREATMENT AS A CHILD S ONE BUT HE IS LESS TOLERANT BECAUSE OF HIS AGE.. THE ORTHOPEDIC ONCOLOGYST SAID THAT THE TUMOR IS IN SUCH A COMPLICATED PLACE SO THEY CANT REMOVE IT THEY WANNA SHRINK IT AND IF IT WORKKS, THEN THEY WANNA TRY SURGERY, BUT IM TRYING TO FIND SOME OTHER SPECIALIST AND SEE OTHER OPINIONS IF SOMEONE CAN HELP ME I WILL APPRECIATE IT A LOT... THANK YOU SO MUCH!!!!

SGW
Posts: 1
Joined: Apr 2009

Your story sounds very similar to ours. My husband who is 52 was diagnosed with osteosarcoma in late February. His tumor is in his left thigh and is high grade. We are being treated at the Mayo Clinic in Rochester, MN. My husband Karl has just completed two cycles of very difficult chemo and next he will have 5 weeks of radiation to try to shrink the tumor. If that works, he will have surgery to remove the tumor. We have been told that our doctors are some of the best in the world for treating this type of cancer. You dads protocal sounds the same as ours. Where does your dad live? There are several places around the country that have doctors who specialize in the treatment of osteosarcoma.

janetannchadwick
Posts: 11
Joined: May 2009

I'm very impressed with Mayo! I'll be back up there starting the week of July 12th for about a month.

Janet

janetannchadwick
Posts: 11
Joined: May 2009

I just came back from a second opinion at Mayo. I have parosteal sarcoma. It's gotten into my groin lymph nodes. I have had it 5 times now. They're recommending a hemi-pelvectomy. They are extremely impressive. I can give you a phone # to call if you're interested.

Janet Chadwick
http://www.caringbridge.org/visit/janetchadwick
janet.mmdev@gmail.com
417-343-2909

louisevruiz's picture
louisevruiz
Posts: 14
Joined: Apr 2003

Hello,

I will celebrate 10 years of remission in August 2009. My final diagnosis was fibroblastic/osteogenic sarcoma. My orthopedic oncologist surgeon is located at USC Health Sciences campus in Los Angeles. His colleague and my oncologist is located at UCLA! Both men are incredible. They saved my leg and then my life.

I had 10 months of cysplatin and adriamycin, direct chemo into the 15 cm. tumor on my fibula then limb salvage surgery! I lost my fibula and perineal nerve. I then had Interferon treatments for 2.5 years to rebuild my immune system. I have to wear an orthotic on my leg to facilitate walking, but I walk well.

It has been an uphill battle. I am happy to be alive and cancer free. Continue to ask questions and seek information. Aggressive advocate for yourself or for the patient you are supporting!

Louise

Bacci
Posts: 3
Joined: Jan 2012

Hi Louise,

I am now taking cysplatin and adriamysin. The side effects seem so horrible for me. Can you let me know if this combination was the cure all for you. This is the doctors third attemt for me. thank you for any info. God Bless.....your continued healing....my e-mail if you wish to write is roxyro1@yahoo.com

Bacco

crazy98
Posts: 25
Joined: Dec 2004

I had both those drugs! Side affects are pretty tough! But May 10th I celebrated 13 years cancer free!! I was dx with Osteosarcoma in my left knee when I was 15. I had limb salvage surgery. I have a blog talking about my journey through survivorship! www.ialwayswantedtoshavemyhead.blogspot.com! Hope you are doing well and would love to answer any questions you might have!

cesrod
Posts: 3
Joined: Jan 2010

My wife was just dignosed with osteosarcoma in her right lung, she has not had yet any treatment yet, the tumor is so big that is covering almost all the lung, she is debasted, getting recomendations from somebody that has gone through similar case would be extremely helpful, please help!

martyr@tsixroads.com
Posts: 2
Joined: Jun 2010

I was diagnosed in April of 2005, with a periosteal osteosarcoma of the rib. This was followed by a tough regiment of chemo.

I do hope and pray that all is well with you.

tweenlives
Posts: 1
Joined: Dec 2011

I am curious as to how many adults posting on this subject happen to have COPD and are/were using Advair or another corticosteroid before the cancer diagnosis. Osteosarcoma is rare enough and, of course, in the rib and chest is even more so.

Alaa
Posts: 1
Joined: Sep 2012

My sister is 22 years old , She have osteosarcoma in ribs and pleural effusion in the left side , She is now in a chemotherapy , the doctors don't know yet if the tumor cells spread to the left lung or not due to the bleeding , i jast want to about your experience in this , Is that curable

aykt36
Posts: 28
Joined: Jun 2010

thanks

charlottekt
Posts: 1
Joined: Oct 2010

Hi Mocass! I was diagnosed in May with the same thing in my chest. Mine is in my left ribs and recently had surgery to remove the tumor along with 6 ribs. I see that this was in 2008 for you and I would love to talk with you more about this since I am having a hard time finding an adult with the same thing. I am a 28 year old female. Could you please email me? charlotte.trussell@yahoo.com

I really need someone to talk to about this and would appreciate any help or advice you could give me!

Charlotte

balsarbi
Posts: 1
Joined: Feb 2011

Looking for a cardiothoracic surgeon to operate on my niece (42 year old ) for osteosarcoma in the chest. please advice - who operated on you

MiaAmor
Posts: 1
Joined: Apr 2011

Balsarbi I understand how frightening it can be to choose a surgeon for such a delicate surgery. My surgeon, Dr. Mark I. Block is part of the Memorial Healthcare System in south FL. He was my life saver; literally. I was diagnosed with a rare type of osteosarcoma in my left lung. The lung and a few ribs were removed followed by an intense chemo regiment (supervised by MD Anderson in TX). Dr. Block has been a constant source of support and encouragement. Unlike other surgeons, his concern did not end when the stitches healed. He stays informed of all my follow up visits with my oncologist. He encourages me to email him with any questions or concerns. I couldn't have asked for a better person and lucky for me he happens to be a gifted surgeon as well. Good luck in your search, and if I may suggest, give Dr. Block's office a call they are a great source of information.

tadamsen
Posts: 1
Joined: Mar 2011

Hi Mocass. Very glad to hear of your story. Keep up the great work! I am a survivor of Osteosarcoma at the base of my skull in 1992. Went through 9 months of Chemo, long surgery to remove tumor and fuse 2 vertebrae then 4 more months of chemo. Seems like so long ago now. Since then I'm fully recovered and playing soccer 4-5 times a week. A full and happy life afterward is definitely possible. I've gotten to where I hardly ever notice any effects from the cancer and surgery. I hope everything is still going great for you and your recovery!

tapcat
Posts: 1
Joined: Oct 2011

Tadamsen,

Where did you have treatment? My husband has osteoblastic osteosarcoma in C2 & C3. He's had 2 surgeries and aggressive chemo. Then he had radiation and cyberknife. But it has grown back. We are about to meet with a new oncologist to see what our treatment options are. Thanks.

Erico
Posts: 2
Joined: Nov 2011

Thank you for your post. I had high grade osteosarcoma diagnosed at the right base of my skull in September. Tumor was about the size of a baseball. Surgery was three weeks ago. I am just about to start chemotherapy. I really appreciate hearing the words of a survivor. You lifted my spirits. Thank you.

aykt36
Posts: 28
Joined: Jun 2010

thanks you admin

Erico
Posts: 2
Joined: Nov 2011

Thank you for your posts. I especially appreciated tadamsen since he is a nearly 10 year survivor and has a cancer in a similar location to what I had. I was diagnosed with Osteosarcoma in Sept 2011. The tumor was in the right infra temporal fossa originating from my right jaw joint. We prayerfully explored several options for surgery and finally landed at Mayo Clinic. They seemed to have more experience in operating in this area than others we looked at. My surgery was on Oct 17th 2011. The tumor was about he size of a baseball. My right jaw was removed and rebuild using my right fibula. My recovery has been amazing. I feel pretty good all things considered and it has been only 3 weeks. We meet with the chemotherapy doctors here locally today. My chemo was designed at Mayo and we plan on receiving it here locally in Utah. I am 50 but healthy (except for the cancer of course). I have run 11 marathons in the last few years. Because they think that I am healthier than most my age they are suggesting that I have cysplatin, adiamiacin and also high dose methotrexate. I was wondering if any other adults have had any experience with high dose Methotraxate in treating this disease.

Jp2011
Posts: 5
Joined: Nov 2011

Hey I'm a girl and I had Osteo in my lower left mandible and I had my surgery in April to remove the whole left side...oh yeh I had a side effect on my 21 cycle in October I became paralyzed from the head down from methotrexate and they called it a toxicity poison apparently I was not quick as i have been with urinating and it stayed in my body to long but it lasted it about seven days

Jp2011
Posts: 5
Joined: Nov 2011

Hey I'm a girl and I had Osteo in my lower left mandible and I had my surgery in April to remove the whole left side

Bacci
Posts: 3
Joined: Jan 2012

Hi there,

You are not alone. I was diagnosed last year with adult Osteosarcoma. What a shock beyond belief. I had never been sick a day in my life. Always at the gym working out, eating healthy, healthy lifestyle, etc.......Mine started in my right chest wall growing from my rib cage. I had a 16 miracle saving surgery to remove this huge tumor and lost 6 ribs in the process. I have underwent two different cycles of chemo but none that made an impact. Now I am on Cisplatin and Adrymiacin. So ill....ugh....I pray this works for me....
If you want to share please feel free. Hope all is well.....

tralbertson
Posts: 2
Joined: Apr 2012

I was diagnosed with osteosacoma last year when I was 38. It was in my humerous and was only found because I started losing strength and feeling in my arm and hand. It was so advanced the Doctor's wanted to remove my arm at the shoulder. Luckily I live in North Carolina and my Doctor said I should go to Duke for a second opinion on the treatment. The Doctors and staff at Duke Medical center were awesome. They offered an experimental surgery that had only been done on two children previously and never on an adult to save my arm. I agreed to give it a try. They removed the majority of my humerous,all of my brachialis muscle, my radial nerve, and portions of my bicep and tricep. They took fibula bone and a nerve from leg and put it in my arm with a few plates and screws to hold it in place. This surgery too 18 hours and weeks of recovery of which I remember very little due to very strong drugs. Unfortunately, this first try was only partially successful the top of the bone graft worked and it attached with my shoulder. The bottom however didn't attach to my elbow. The nerve graft also failed and I lost the use of my hand. They schuled a second surgery. In this surgery they took a piece of my hip bone and put in at the elbow hoping this would attach me elbow to the fibula in arm. Also during this surgery the did a tendon transfer surgery on my forearm to give me limited use of my hand again.

tralbertson
Posts: 2
Joined: Apr 2012

That surgery lasted 13 hours and was partially successful. The use of my hand returned somewhat it works better than a prosthetic but barely. The hip bone graft joined to my elbow great but would not attach to the fibula in my arm. So the schedule yet another surgery. This time the removed the bone marrow from my femur and used to glue all of the grafts together. They also used metal rods and cables to make sure it stayed in place. This surgery was took 11 hours and finally successful. So I spent the majority of 2011 either in awaiting a surgery or recovering from a surgery. I ended up with an somewhat functional arm and hand that's much better than the alternative. I have to go back to Duke every 3 months for xrays and ct scans but so far the cancer is gone.

crazy98
Posts: 25
Joined: Dec 2004

Wow what a surgery!!! I had limb salvage of the leg about 14 years ago. I was dx with osteo in my left knee. At the time they were amputaing most of the time. I am celebrating 13 years cancer free!! hope things are going well now for you! email me at passingthetest98@aol.com

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