metastatic osteosarcoma

lmitchell99

My 12 year old niece was diagnosed with osteosarcoma 4 weeks ago. She began chemo and will have surgery halfway through a 38 week session. There were 2 extremely small spots in her lungs. Have any of you beaten this cancer with spots in the lungs? Thanks.

Tammy34

I am in the exact same position you are right now. My 15 year old niece was just diagnosed as well. She also has it in her lungs and undergoes surgery in 2 months. She has started chemo treatments, she had to be hospitalized after getting a fever. She should be released on Sunday. This is a scary cancer, but I called the ACS hotline and they sent me information on it. There really aren't any statistics to give you with metastatic osteosarcoma. I do know that in the last couple of years - it has markedly improved though. So there is hope. Everybody goes through it differently and the best advise I was given was to go day by day on how your niece is feeling. Everybody is so different, and respond diferently to chemo - so it is a waiting game. It can be very hard I know, but at least we have hope that wasn't there before. To get info on this cancer, call the ACS hot line 1-800-ACS-2345, they will explain everything to you and send you information on it as well - they were absolutely wonderful when I called!! Of course, her doctor will be the main source of information as it pertains to her specifically. I believe knowledge is power,and prayer is even more powerful. we should exchange e-mails and keep in touch through this. Let me know. I will pray for your niece.

flywitegy9

Tammy34 said:

I am in the exact same position you are right now. My 15 year old niece was just diagnosed as well. She also has it in her lungs and undergoes surgery in 2 months. She has started chemo treatments, she had to be hospitalized after getting a fever. She should be released on Sunday. This is a scary cancer, but I called the ACS hotline and they sent me information on it. There really aren't any statistics to give you with metastatic osteosarcoma. I do know that in the last couple of years - it has markedly improved though. So there is hope. Everybody goes through it differently and the best advise I was given was to go day by day on how your niece is feeling. Everybody is so different, and respond diferently to chemo - so it is a waiting game. It can be very hard I know, but at least we have hope that wasn't there before. To get info on this cancer, call the ACS hot line 1-800-ACS-2345, they will explain everything to you and send you information on it as well - they were absolutely wonderful when I called!! Of course, her doctor will be the main source of information as it pertains to her specifically. I believe knowledge is power,and prayer is even more powerful. we should exchange e-mails and keep in touch through this. Let me know. I will pray for your niece.

I was diagnosed with osteosarcoma when I was 15 (I'm 21 now) and received chemo and limb resection surgery. A few years later, I relapsed with nodules in my lungs. I was treated with surgery and different chemo drugs and have been back in remission for over a year. I also know a girl who had nodules in her lungs at time of diagnosis and has been cancer free for over five years. So there's definitely treatments that can work for people with metastatic osteosarcoma.

cvillegas

Tammy34 said:

I am in the exact same position you are right now. My 15 year old niece was just diagnosed as well. She also has it in her lungs and undergoes surgery in 2 months. She has started chemo treatments, she had to be hospitalized after getting a fever. She should be released on Sunday. This is a scary cancer, but I called the ACS hotline and they sent me information on it. There really aren't any statistics to give you with metastatic osteosarcoma. I do know that in the last couple of years - it has markedly improved though. So there is hope. Everybody goes through it differently and the best advise I was given was to go day by day on how your niece is feeling. Everybody is so different, and respond diferently to chemo - so it is a waiting game. It can be very hard I know, but at least we have hope that wasn't there before. To get info on this cancer, call the ACS hot line 1-800-ACS-2345, they will explain everything to you and send you information on it as well - they were absolutely wonderful when I called!! Of course, her doctor will be the main source of information as it pertains to her specifically. I believe knowledge is power,and prayer is even more powerful. we should exchange e-mails and keep in touch through this. Let me know. I will pray for your niece.

I am 28 with tumors in both lungs. I have had surgery on one side and will have surgery on the other this week. There is already another tumor in the side I was just operated on. I had been unresponsive to chemo prior to these mets. They used a new breast cancer drug called Taxotere, in conjunction with Gemzar and it killed mine off 90% after just two treatments. Maybe you can ask your doc. about using these if she is not doing well.

sadsister

My sister was just diagnosed with osteosarcoma last week and yesterday the doctor said he thinks he sees a few spots on her lungs. Does she have a good chance of beating this, I am so scared for her she is only 13.

lacoder

cvillegas said:

I am 28 with tumors in both lungs. I have had surgery on one side and will have surgery on the other this week. There is already another tumor in the side I was just operated on. I had been unresponsive to chemo prior to these mets. They used a new breast cancer drug called Taxotere, in conjunction with Gemzar and it killed mine off 90% after just two treatments. Maybe you can ask your doc. about using these if she is not doing well.

I am so relieved to read your message. My fiance' who's 33 is currently undergoing chemotherapy using Taxotere and Gemzar. He too had surgery to remove the nodules on one lung first and by the time he was ready for the second surgery, there were already spots on the lung they'd operated on. We were devastated! I'm glad to hear the chemo was effective for you. We go in for the CT scan of his lungs next Friday. He's had 2 rounds of the Taxotere and Gemzar and it's time to see if it's working. It's been over a month since your last message. How are things going?

cvillegas

lacoder said:

I am so relieved to read your message. My fiance' who's 33 is currently undergoing chemotherapy using Taxotere and Gemzar. He too had surgery to remove the nodules on one lung first and by the time he was ready for the second surgery, there were already spots on the lung they'd operated on. We were devastated! I'm glad to hear the chemo was effective for you. We go in for the CT scan of his lungs next Friday. He's had 2 rounds of the Taxotere and Gemzar and it's time to see if it's working. It's been over a month since your last message. How are things going?

Please feel free to email me if you want. I check my cvillegas02@aol.com address far more frequently than this site. I have had 3 lung surgeries in 3 months, the last of which resulted in the removal of my entire left lung. Yikes! But I am still alive and not on oxygen or anything. I start another series of taxotere and gemzar today since I have exhausted my surgical options. I'd love to chat. Please email me if anyone has questions about my experience...

cvillegas

lacoder said:

I am so relieved to read your message. My fiance' who's 33 is currently undergoing chemotherapy using Taxotere and Gemzar. He too had surgery to remove the nodules on one lung first and by the time he was ready for the second surgery, there were already spots on the lung they'd operated on. We were devastated! I'm glad to hear the chemo was effective for you. We go in for the CT scan of his lungs next Friday. He's had 2 rounds of the Taxotere and Gemzar and it's time to see if it's working. It's been over a month since your last message. How are things going?

One more note. On my CT scans after going through 2 rounds of gemzar / taxotere, it showed that my tumors had actually grown (although not significanty). We were disappointed in the results. But then when they went in to do the surgery, there was over 90% necrosis. Obviously we were all shocked (including the surgeons and oncologist). The tumor tissue apparently swelled up a bit as it had died. It didn't shrink. So don't be discouraged if that is what your finace's CT scan shows. It doesn't necessarily mean it hasn't worked. Just thought I'd add that bit of info. This whole cancer deal is a wild ride. Hang in there and give your finace all the support you can.

maudmack

flywitegy9 said:

I was diagnosed with osteosarcoma when I was 15 (I'm 21 now) and received chemo and limb resection surgery. A few years later, I relapsed with nodules in my lungs. I was treated with surgery and different chemo drugs and have been back in remission for over a year. I also know a girl who had nodules in her lungs at time of diagnosis and has been cancer free for over five years. So there's definitely treatments that can work for people with metastatic osteosarcoma.

I am friends with an 18 yr old who has osteosarcoma. He has just relapsed with nodules in his lungs. The doctors want him to start chemo again next week. He had just finished a round and thought that he would be finished. Now he refuses to go back to the hospital for the chemo. He needs a friend who has been through this and can talk to him about continuing his treatment.

nbrashears

cvillegas said:

I am 28 with tumors in both lungs. I have had surgery on one side and will have surgery on the other this week. There is already another tumor in the side I was just operated on. I had been unresponsive to chemo prior to these mets. They used a new breast cancer drug called Taxotere, in conjunction with Gemzar and it killed mine off 90% after just two treatments. Maybe you can ask your doc. about using these if she is not doing well.

My husband turned 30 in February. In July 2003 he was diagnosed with osteosarcoma in his left femur. He went through chemo and limb-sparing surgery and was back to work in January 2004 - he had 90% necrosis of his tumor prior to surgery. At his checkup on August 5th, his CT showed mets in his lungs. We are waiting for the docs to give us treatment alternatives. He has about 6 small spots in each lung that they says can't be surgically removed since there are so many. So, they are looking at chemo options, and maybe experimental/trial treatments. Was the Taxotere, in conjunction with Gemzar considered experimental? Where did you have this done?

samlillico

Hi, I was 13 when diagnosed with osteosarcome in the femur and was later told that I had lumps on my lungs. I finished treatment july 2003 and had a femur and knee replacement. Then in February 2004 I was told my lumps on my lung were growing again. I had half of my lungs removed on both sides and also have holes in the remaining lungs I have from lumps they have removed. I am 15 now and absolutly fine now. I dont need oxygen or anything and am living like a normal teeneger. So yes I have beaten it. If there is anything else that you would like to ask me I would be more than happy to answer anymore questions you have. good luck. samlillico@hotmail.com

Mikewurum

samlillico said:

Hi, I was 13 when diagnosed with osteosarcome in the femur and was later told that I had lumps on my lungs. I finished treatment july 2003 and had a femur and knee replacement. Then in February 2004 I was told my lumps on my lung were growing again. I had half of my lungs removed on both sides and also have holes in the remaining lungs I have from lumps they have removed. I am 15 now and absolutly fine now. I dont need oxygen or anything and am living like a normal teeneger. So yes I have beaten it. If there is anything else that you would like to ask me I would be more than happy to answer anymore questions you have. good luck. samlillico@hotmail.com

Osteosarcoma metastasis to lungs
My brother has been fighting osteo for almost a year now. He is 23 and it has spread and grown in his lungs. The doc said theres nothing they can do to save him at this point but she never brought up the option of lung surgery. What hospitals have u all gone to? We want a 2nd opinion. Thank you so much!

-Mike

Hope4Family

Metastatic Osteosarcoma to the Lungs

Hello.  My sister (mid-40s) was diagnosed with Metastatic Osteosarcoma in October 2017, underwent chemo, had limb salvage surgery in January, did more chemo after, then had surgery on her right lung in mid-May and surgery on her left lung end of May.  We just found out today that she has new spots in her right lower lobe and right middle lobe of her lung. They also found fluid in her pleural cavity.  Doctor ordered a petscan and for the fluid to be checked for cancer cells. We are hoping that petscan will not show any other metastesis and that the fluid will come back free of cancer so they can proceed with the lung surgery.  If not, I believe she has to go through chemo.  Any words of wisdom from anyone?  Please pray for my sister.