Osteosarcoma in an adult

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Comments

  • maryangier
    maryangier Member Posts: 1
    msheida said:

    Osteosarcoma
    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

    new diagnosis for me osteosarcoma
    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 !
  • Bacci
    Bacci Member Posts: 3
    Adult Osteosarcoma
    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.....
  • Bacci
    Bacci Member Posts: 3

    10 years remission from fibroblastic/osteogenic sarcoma!
    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

    Adult Osteosarcoma
    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
  • tralbertson
    tralbertson Member Posts: 2
    Osteosarcoma
    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
    tralbertson Member Posts: 2

    Osteosarcoma
    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.

    Osteosarcoma part 2
    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.
  • cbsboone
    cbsboone Member Posts: 1

    new diagnosis for me osteosarcoma
    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 !

    Osteosarcoma
    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!!
  • crazy98
    crazy98 Member Posts: 25
    Bacci said:

    Adult Osteosarcoma
    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

    Adriamysin and Cysplatin
    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!
  • crazy98
    crazy98 Member Posts: 25

    Osteosarcoma
    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.

    limb sparing..
    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
  • Alaa
    Alaa Member Posts: 1

    Osteosarcoma of the rib or in the chest area
    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.

    My sister is 22 years old ,
    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
  • Osteosarcoma also
    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

    Periosteal Osteosarcoma in Rib (f, 30, mother)

    Hi, my wife just got diagnosed with Intermediate Grade Osteosarcoma in her rib.  She is the mother of our 1yo daughter and we are freaking out... 

     

    She had been sick on and off with coughs, sinus infections, bronchitis type of things for two months (dr.s thought, although not sure if the recent diagnosis changes things, that this is unrelated).  Our daughter kept bringing home germs from daycare...  During a chest xray that we had asked for, they found a tumor on her rib.  Were referred to a local thorasic surgeon who said his reccomendation is to remove the rib.  He thought it was most likely a benign chondroma or possibly a chondrosarcoma, and either way it has to come out, so why risk it.  I am hoping this isn't an unrecoverable mistake...  We found out afterwords that it is in fact an intermediate grade osteosarcoma.  We are waiting to hear from Sloan as far as next steps. 

     

    It may be worth mentioning that she had been diagnosed with a Fibrous Dysplasia ~5 years back (we now hope they were right).  They did a full body bone scan at the time.  We think the dysplasia is now gone.  Also, this Osteosarcoma was discovered with a chest xray, we did another chest CT which looked clean except for this tumor, and an MRI of the liver.  The liver had 2 benign (they are now taking another look) lesions.  We think the next step is a full body PET scan. 

     

    The Surgeon said the tumor came out very clean.  The lung plura was slightly attached when he took it out and required a stitch or two, but didnt think it invaded the lung. 

     

    This seems to be so rare and hard to find any good information.  It seems that you guys have fought, and beat, this terror.  Any advice, contact, lessons learned, thoughts..  Anything is appreciated.  Thank you in advance and I wish anyone struggling with this all the best.

  • mcoll102
    mcoll102 Member Posts: 1 Member

    Periosteal Osteosarcoma in Rib (f, 30, mother)

    Hi, my wife just got diagnosed with Intermediate Grade Osteosarcoma in her rib.  She is the mother of our 1yo daughter and we are freaking out... 

     

    She had been sick on and off with coughs, sinus infections, bronchitis type of things for two months (dr.s thought, although not sure if the recent diagnosis changes things, that this is unrelated).  Our daughter kept bringing home germs from daycare...  During a chest xray that we had asked for, they found a tumor on her rib.  Were referred to a local thorasic surgeon who said his reccomendation is to remove the rib.  He thought it was most likely a benign chondroma or possibly a chondrosarcoma, and either way it has to come out, so why risk it.  I am hoping this isn't an unrecoverable mistake...  We found out afterwords that it is in fact an intermediate grade osteosarcoma.  We are waiting to hear from Sloan as far as next steps. 

     

    It may be worth mentioning that she had been diagnosed with a Fibrous Dysplasia ~5 years back (we now hope they were right).  They did a full body bone scan at the time.  We think the dysplasia is now gone.  Also, this Osteosarcoma was discovered with a chest xray, we did another chest CT which looked clean except for this tumor, and an MRI of the liver.  The liver had 2 benign (they are now taking another look) lesions.  We think the next step is a full body PET scan. 

     

    The Surgeon said the tumor came out very clean.  The lung plura was slightly attached when he took it out and required a stitch or two, but didnt think it invaded the lung. 

     

    This seems to be so rare and hard to find any good information.  It seems that you guys have fought, and beat, this terror.  Any advice, contact, lessons learned, thoughts..  Anything is appreciated.  Thank you in advance and I wish anyone struggling with this all the best.

    mother with osteosarcoma

    Hi Fightingthedemon,

    I am so sorry your wife and family has to go through this.

    My story has some similarities so I thought I would share it with you. I am 36, mother of 2 (18mo son and 3 yo daughter. I was diagnosed with soft tissue sarcoma in my left thigh last june. I had radiotherapy in the summer, and surgery for the removal of the tumor in september. Following the analysis of the whole tumor, I got a final diagnosis of osteosarcoma.

    My doctor explained that for that type of cancer, we usually do not do radiotherapy (although my tumor had a good response to the treatment), but we usually do 3 cycles of chemo before surgery and 3 after. I ended up having the 6 in a row.

    The chemo protocol for osteosarcoma is pretty rough, with higher doses than with other cancers. That also means more side effects, although it varies from one person to the other.

    My husband and I were in shock when we initially got the diagnosis, and felt like things were getting from bad to worse. I initially thought about my children, and how if I didn't survive, they wouldn't remember how much I loved them.

    I hope I don't sound too negative. That's not my intention. I want to validate all the feelings that you and your wife must be dealing with right now.

    During treatment, I tried not to think of the future, or of how I felt about cancer, and just decided to let myself drift through treatments, with all the help I could get. My husband has been my rock, and my parents were really helpful in trying to keep things normal for the kids. There were days where I didn't think I would make it through, but I did. I had a great team of doctors, who adjusted the medication to manage the side effects as much as they could.

    I'm assuming that they will offer chemo to your wife. 

    My pieces of advice... Accept ALL the help you can get. It takes more courage to do so than to try to do it all on your own. Tell your wife to take all the meds she can to manage the side effects and not to wait to do so. Try to keep a few social outings for yourself. 

    If you have specific questions I'd be happy to share more.

    Just remember, the next months are going to be hard, but you're going through that for a happy cancer free future. That's the ultimate goal!

    Hope that help!