Cancer Survivors Network

I had osteosarcoma of the pelvis when I was 42. I am now 46 - been cancer free for 3 1/2 years. I, too, am not the same physically or emotionally. Would love to correspond. Thanks.

My stepson is now 17 yrs old. He was Dx with Ewing's sarcoma of the left pelvic 08/09. He went through chemo then radiation and has been clear until his latest scan 10/11/10. It revealed mets to his lungs and he is now going through chemo again. Would love to chat. My email is ginarogersla@aol.com

My stepson is now 17 yrs old. He was Dx with Ewing's sarcoma of the left pelvic 08/09. He went through chemo then radiation and has been clear until his latest scan 10/11/10. It revealed mets to his lungs and he is now going through chemo again. Would love to chat. My email is ginarogersla@aol.com

Hi Danielle,

How is your husband? My 17 yr old stepson was DX with Ewing's Sarcoma of his left pelvic. He went through intense chemo and then radiation and has been clear until his latest scans on Oct 11th. Looks like he has lung mets and is going through chemo again. Can't wait to hear from you!

My granddaughter who is 5 has osteosarcoma for the second time. The First time in her left leg above knee. They had to amputate. 9 months later in the right leg. Same place. Now they are talking about either amputation or leg salvage.
I need to ask a sensetive question. sorry. How long did it take for it to spread to the lungs? and what type of treatment or they giving? "They are telling us that Our girl only has a 25% survival.
Again, I'm very sorry about your situation.
Tim

Hi Tim, My daughter is 4 years old and reading your post breaks my heart. Survival rates are not set in stone. Just be positive and remember, people do come out of this on the other side. Stay strong, I pray for your grand daughter,

Jennifer

May God continue to bless you and keep you in the palm of his loving hands

Enjoy life

Peace and Blessings

Hey,

I've never posted to this site, so not sure what I'm doing?? Briefly, my stepson (my "son" since he was 10) was dx with Ewing's Sarcoma of the left pelvic 08/09. It was localized with no signs of metastasis. He had chemo then radiation. He's been clear until his latest scans Oct 11th; chest CT revealed 4-5 lesions on his lungs suspicious for metastasis. We're in chemo again. Just wanting to know how you all are doing and what type of treatment you went through. Thanks for posting and hope to hear from you soon!

I had a tibia transplant and 9 months of chemo when I was 23. I am now 30. I was very active, ran and played soccer. My leg took longer then 2 years to completely heal but now that it has my doctor is thrilled with my leg. Everytime I saw my doctor for 6 years I asked if I could start running and I cried everytime he said no. I have adjusted and it was not easy and I still have my days. I was also a teacher and could no longer be on my feet all day. Still trying to adjust to a new profession.

I saw my doctor 6 months ago and once again I asked can I please run, just a little. I was ready for his smirk and then an adament no, but he could not believe how well my leg was doing. My doctor, and as stupid as this may sound to some I couldn't have been happier, said "Well...." and he gave me permission to run around while playing with my niece and nephews and even to run around the block while they were learning to ride bikes.
Just those little freedoms where I could play and run with the kids made everything okay. Professional still struggling, but getting closer to acceptance.

I also use a punching bag that is little and stuck to the top of a table at home when I need to get out frustration.

I'm 30 and was diagnosed with Bone Cancer in my right Tibia when I was 16. I too had limb salvage with a kadavar. Its been a long 14 years. I am cancer free but never pain free from my leg surgery. It would be great to compare stories with some other people with the same type of surgery.

I had bone cancer when I was 15. It's been 12 years for me!! I live with pain every day as well. I would love to chat! My email is passingthetest98@aol.com. I have started a blog as well. www.ialwayswantedtoshavemyhead.blogspot.com

Hi my name is Alison. I had osteogenic sarcoma of my rt knee when I was 17. I have been cancer free 13 years now. I have a limb salvage and would love to chat with you.
You can email me at shaggymaggie@ymail.com

Thanks

I also had bone cancer but I was 13 at the time. I'm now 40 years old and cancer free. The doctor fused my knee joint and placed a steel rod from the hip down to almost the ankle. For me pain depends on the time of year and rain. I don't do very well in the cold and when traveling I use an ace bandage to wrap up my knee and Icy Hot to keep it warm.. It sounds wierd but it works for me...... Glad to hear you are cancer free....

I also had bone cancer when I was 18 and have had a fused knee for 14 years now. It's nice to see others like me out there. I met 3 people at the hospital while I was in treatments but haven't come across anyone in my adult life. I try not to let it slow me down, but I would love to run again...which is funny, cause I hated running when I physically could..lol. I'm glad to be cancer free for 14 years now so i'm not complaining too much.

Same for me too. I also have a steel rod in my leg and the bone is fused with the cadaver bone across the top of where the knee should. be. For me it was my left leg and I was diagnosed when I was 13. I'm 40 now and free of cancer....

Wow! How I can relate! My stepson ("son" since he was 10) was Dx with Ewing's Sarcoma of his left pelvic 08/09. He went through intense chemo and radiation and has been clear until his latest scans 10/11/10; CT revealed mets to his lungs; very tiny and caught early but we're going through chemo again but he is able to attend school so far. He missed almost all of his Jr. year of high school last year. He LOVES basketball and was gearing up to play this year, his Sr. year. He too was told to be very careful with his activity but very difficult to slow down a teenager and God has blessed him with a stable bone. Thank you for sharing your story and reply when you can.

Wow! How I can relate! My stepson ("son" since he was 10) was Dx with Ewing's Sarcoma of his left pelvic 08/09. He went through intense chemo and radiation and has been clear until his latest scans 10/11/10; CT revealed mets to his lungs; very tiny and caught early but we're going through chemo again but he is able to attend school so far. He missed almost all of his Jr. year of high school last year. He LOVES basketball and was gearing up to play this year, his Sr. year. He too was told to be very careful with his activity but very difficult to slow down a teenager and God has blessed him with a stable bone. Thank you for sharing your story and reply when you can.

There is a new support group and website for Adult Bone Cancer Survivors. You are all welcome to share your stories and provide support! http://abcsurvivors.net

Just trying to find someone who has had cancer in the ribs. It is rare and I have not been able to talk with anyone about it.

Hi. I know what you mean. Its pretty uncommon. I had a tumor on my 9th rib on the right side. Went through chemo and surgery. Did you have to have surgery. Would love to talk more.

Hi Shirley, my area was in the ribcage too. Would love to talk more...my email roxyro1@yahoo.com

How did you find out you had bone cancer? I have bone cancer, mets from breast cancer.
I broke my left arm and found out I have cancer , again.
I'm having alot of pain in my left leg in the calf area, They say its not cancer. but it gets to hurting so bad, I can't walk.
I'm taking pill form chemo for the cancer under my left arm now. Have lost the use of my left hand and arm
. my email is kountrygrandma2@yahoo.com

I too have bone cancer, mets from breast cancer. I have a large tumor close to my neck, they treated it with radiation and the growth has slow down. It still hurts but not as bad, I take 15 mg of morphine twice a day. I also have 6 other spots mostly on my ribs.
I am realizing that I need to take better care of myself and not overdue it. I am always
taking care of kids, gradkids, husband, bills, job, house, etc and not much time to rest and I get run down. I need to let things go and rest more. Have you had a PET scan and bone scan? I wish you the best, good luck and God bless.

Hi traveling_bones I just ran into your comment. Just wondering if your femur healed? I myself was dx w/osteosarcoma when I was 13 and I am now 34. I had my knee and femur replaced too. I know how you feel because I have been in that "not being able to walk" stage....several times actually. All I can say is hang in there...you won't be there forever. I know it's hard...patience runs low in these situations( I am currently going through some "technical difficulties" myself). I have my bad days here and there. And I may loose my patience for a moment but one thing I have never lost is Faith and Hope!! So don't you either!!

Hi. May stepson was DX w/Ewings Sarcoma (non metastatic) of his left pelvic 08/09. underwent chemo then radiation. Oct 2010 revealed several small lesions on his lungs. He underwent 2 more tx of chemo then rescanned. No change!! He underwent a bx of the largest lesion and it was not cancer. We just rescanned 01/21/11 and there is still no change. There is one lesion that may have cancer characteristics but the docs just don't know and would expect that he would have had rapid growth. Have any of you had this type of experience? They're talking lung surgery and we're just not sure because of the no growth.....Any input would be greatly appreciated.

my son too has ES on his right pelvic area. May I ask how did they treat your stepson? Did he have chemo, radiation and surgery? We are new to this and am looking for some answers from survivors.

I am a long term ES survivour (32 yrs). I probably can't help with treatments, but I can at least say hi and let you know it can be fought.

Hi left tibia
I don't know if you were asking me about what I had? But I will answer anyways...I had bone cancer of right femur/knee.