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Osteosarcoma

nancyhendrick
Posts: 2
Joined: Aug 2000

My18yr. old son was diagnosed with osteosarcoma in April, 2000. Looking for people that are willing to share experiences, information and support.

pinzy4
Posts: 2
Joined: Jul 2000

Hello, my name is Lindsay and I am almost 20 years old and a 3 time survivor of Osteosarcoma and very interested in communicating with you and hoping that both our situations could help bring a positive light on our situations. Here is just a little info. about me. I was first diagnosed with Osteo. when I was a freshmen in high school. I had to leave school because the treatments were just too much to handle. While I was on many different treatments, I mostly had Adriamycin during this round. After 7 months I was in remission. Then around Christmas of my senior year, I relapsed again. This time I was more prepared for the chemo, but the cancer definitely changed me an my lifestyle. During this time I was mostly on VP-16 and at one points cisplatin. Then I entered college and thought this would be behind me. But then at the end of my around the end of October of last year, I discoverd the Osteo had returned. I did stay in college and also did treatments. But then it was in February that the cancer metestasized to my right lung. This was probably the most grimm part of my struggle, but I remained in school and struggled a lot. I was on Taxol for the most part. And now on the 27th, I will be proud to celebrate 3 months of being in remission.
So, with this said, I feel like I could go on forever, but I think I'll just say a few more things and let you respond with your own personal questions. Right now, I feel for your son because I've had the disease, but at this tender age of 18, I feel for him even more. This is an odd age because we are Legally adults, but not really prepared for such a dramatic illness. Also, when it comes to the cancer scene, this age is often overlooked. Many people focus on childhood cancers, which Osteo generally is, but 18 year olds don't want to be put in hospital rooms with Winnie the Pooh on the walls and giving us a sucker, most likely won't make me smile. But, like I said we are not adults with families to take care of and jobs that are a main priority. In turn, I feel like we often get overlooked. That is one reason I would like to communicate with you. I think I may be able to relate to you and your family, but I also have had cancer turn my life upside down and I'm looking for resources to get people like your son and myself to get recognition and have places to fit into. There is, in actuallity, very little knowledge of "cancer" itself and especially with Osteo. In just my 7 years of dealing with this there have been major changes in the treatment options, etc.
Ok, I know I've said a lot... hopefully not too much. Please feel free to e-mail me at pinzy4@hotmail.com.

nancyhendrick
Posts: 2
Joined: Aug 2000

Lindsay,
Thank you for sharing your experiences. It is helpful to hear how you have managed to go forward with your life inspite of your cancer. Brent was diagnosed in April with Osteosarcoma in his humerous that has metestasized to both lungs. He graduated high school in June but has put his college plans on hold for a while. He has been going though chemo and surgey is scheduled on the primary tumor in mid-late September; they hope to save his arm. He will have two lung surgeries in the future. If you don't mind sharing I was wondering where your cancer was and did you have surgery on the primary tumor and or your lung? I agree with you about the age problems, I have noticed that Brent is not entertained with the Mickey Mouse pictures in the hospital rooms or having visits from Ronald Mc Donald. He has not shown any interest as of yet in finding support from people who have or are currently going through similar experiences, but I think it would really help him. It is hard because it is a time when friends are going off to make a new life in one way or another and he is stuck home being dependent on his parent's. Part of the reason I'm trying to find information is so when he does decide he needs some support I'll be able to help him access it more readily. It also helps me personally to get as much information as possible. You can e-mail me at NancyH0001@aol.com Thanks again.
Nancy

jmalone4kids
Posts: 4
Joined: Jul 2007

Hi Lindsay! My name is Jennifer. I have had osteosarcoma 3 times as well and found your story interesting. I was 1st diagnosed at 13 years old.Then again at 15, and then it came back to my lungs at 18 right after I graduated high school. I know exactly what you have been through and the worries of it returning. Trust me. They amputated my right leg above the knee. I do well. I have 4 healthy children. 3 daughters and 1 son. I would love to chat with you and hear more of your story. I wanted to give you hope because I am now 30 years old and almost 13 years cancer free!!! I would love to hear from you. Jennifer

runner4life's picture
runner4life
Posts: 5
Joined: May 2001

Hi,I was diognosed with osteo in august of '98.I am now two years off treatment and doing great.I will be turning 18 in three weeks.I would love to talk about my expeiences.

aimer4221's picture
aimer4221
Posts: 1
Joined: Apr 2002

I am a 27-year old and have just been diagnosed with osteosarcoma. Because this is mostly a child cancer, all of my doctor's are pediactric oncologists. I have parosteal combined with conventional osteosacoma on my left tibia.

I have gone through my first round of chemo and will have 10 more weeks of it before my surgery..then another 4 months. It's a combo of adriamycin and methotrexate.

I am willing to email with any of you on your own experiences. Being 27 and haveing a childhood cancer is a bit tough to deal with. I, too, get to have kiddie band-aids and toys all over the waiting room at the doctor. However, they put me in the adult oncology floor during hospital stays.

My prognosis is good, but I'd like to hear other's stories because I've had a rough time dealing with the chemo so far.

Please email me at Aimer4221@aol.com if you'd like to chat.

Amy

jen83
Posts: 2
Joined: Jul 2002

Hi-

I'm 19, and a osteosarcoma survivor. I was diagnosed about 8 years ago after having an ongoing pain in my leg, especially during my basketball games and figure skating practices. For the last 7 years I've been involved in a one-on-one support program for teens with cancer through the hospital, so I'm definitely used to talking about my experience and would love to help in any way possible. Right now I'm in the process of designing a website called "connect" which is geared toward college and high school age people. It's pretty cool, and there are other stories of osteosarcoma survivors on our site and email addresses to contact them. It's at www.connectonline2k.cjb.net (sorry about the pop-ups, we're in the process of getting a .com site) If you want, you can also email me at JenJenMU@hotmail.com

Best of luck to you and your son-

Jen

marysorens's picture
marysorens
Posts: 10
Joined: Feb 2005

I was diagnosed with parosteal osteosarcoma in 2003 at age 28. Because this type of osteosarcoma normally affects adults and has different treatments and prognosis, I'm developing a website where survivors can connect. If you have questions or would like to read survivor stories, please visit http://survivors.marysorens.com .

Zeus_66
Posts: 1
Joined: Nov 2013

Hi! 

Im Amanda, I know this post was from 13 years ago but id love to share my story. 

I was diagnosed with osteosarcoma in March of 2011.

I had a small tumor in my right fibula. 

I had it removed and was declared Cancer free January of 2012.

I've been cancer free since:)

I also have PTSD (Post Traumatic Stress Disorder) 

Im always afraid of it returning and have nightmares about it. 

I hope your son is okay now!

brihdz's picture
brihdz
Posts: 6
Joined: Nov 2013

Hi, my name is Brianna and I know you have been in remission (thank goodness) but I have been rediagnosed (seven years after) my first diagnosis which was a different cancer Soft tissue sarcoma. Now I have been diagnosed with Grade 2 intermediate Osteosarcoma. I want to be calm and collective about all this, but its really hard to since lately I've been suffering from anxiety and depression. I guess I was a little too confident that it wouldn't return since its been 7 years, but now that is has, I'm petrified. I'm sorry, I don't mean to feed your fears or make anything worse, but I just need someone who relates..and can maybe answer a few questions.

mkarimi
Posts: 1
Joined: Jul 2014

For all you osteosarcoma patients and survivors out there. I know its not easy. Just be strong and stay tough. I survived being diagnosed with osteo sarcoma when I was 12 years old. After 2 years of adriomycin, cistplastin, methotrexate chemo.. And 24 knee surgeries (for my titanium knee prosthesis) - I can tell you there there is always light at the end of the tunnel.  Like one of my mentors told me a long time.. Its not what can kill you, that is hard to live with. Its realy what you have have to LIVE with, thats hard to deal with.

 

God bless and be strong.

 

 

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