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Bone Cancer Survivor

jarales
Posts: 1
Joined: Oct 2000

I had bone cancer in my right knee when I was 21 and have survived. I'm 32 years old now and would like to offer and type of support needed.

tylerc
Posts: 1
Joined: Oct 2001

I had ostoesarcoma in my pelvis when i was 25
I am now 30
I have been cancer free for 5 years
I am not the same physiclly or emotionally
i have good days and bad days

grover
Posts: 2
Joined: Oct 2000

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.

stepmom04
Posts: 12
Joined: Apr 2010

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

stepmom04
Posts: 12
Joined: Apr 2010

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

danielle4
Posts: 1
Joined: Apr 2002

My husband is 26yrs and just had his left leg amputated due to a reaccurance of osteosarcoma in his tibia. The cance has also spread to his lungs for the 2nd time. I guess we were both just looking for someone to talk with that would give us strength and a positive outlook that he can survive this and will live a long happy life. Anyways, thanks -- Danielle4

stepmom04
Posts: 12
Joined: Apr 2010

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!

KaylaGirl's picture
KaylaGirl
Posts: 12
Joined: Nov 2010

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

Proactive Daughter's picture
Proactive Daughter
Posts: 55
Joined: Dec 2011

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

surviver08
Posts: 1
Joined: Apr 2002

I am 12 and was diagnosed with bone cancer in my head when I was 8.

FaithandPeace
Posts: 3
Joined: Oct 2010

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

Enjoy life

Peace and Blessings

stepmom04
Posts: 12
Joined: Apr 2010

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!

sporti1381
Posts: 7
Joined: Oct 2002

Hi, I'm now 21 and just finished my treatments a couple months ago. I had bone cancer, but mine was in the tibia. They replaced it with Kadavour bone and it's still not healed; they said it would take about 2 years to fully heal. I use to be extremely active, and this has put a total halt on my activity, and even once it heals I'll be limited to what I can do unless I want to risk having surgery again. Were you able to resume a pretty normal active life, if so or not, how did you cope?
Thanks, Somer

christinep22
Posts: 5
Joined: Jun 2010

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.

megmal
Posts: 2
Joined: Jul 2005

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.

crazy98
Posts: 25
Joined: Dec 2004

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

Maggie0597
Posts: 3
Joined: Feb 2011

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

michaelyak
Posts: 2
Joined: May 2011

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....

Shalyne12's picture
Shalyne12
Posts: 2
Joined: May 2011

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.

abyss87
Posts: 1
Joined: Oct 2012

Hi I have breast to bone cancer so I'm stage 4, I'm only 33 years old with 3 little kids, how did you get rid of your cancer? Any info would help, thanks!

michaelyak
Posts: 2
Joined: May 2011

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....

stepmom04
Posts: 12
Joined: Apr 2010

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.

stepmom04
Posts: 12
Joined: Apr 2010

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.

maoberst's picture
maoberst
Posts: 11
Joined: Oct 2012

Hello Somer....I hope you are doing very well! Did your leg heal? How are you? My daughter just finished with her 10 month treatment of Ewing Sarcoma of the tibia. She had a major surgery in February 2012. Her surgery also did not provide healing so she had a new surgery two weeks ago. I am hoping your are doing better now that it's been some time. Please share....

Thanks,
Melissa

Survivor2001
Posts: 5
Joined: Jan 2004

Hello! I too had bone cancer in my right leg right above my knee. It was a month before I turned 22. I had to have my knee replaced and 10 months of chemo! I was just wondering what kind of treatment you had, and how you are getting by now. I just turned 25 this month. I would like to talk to you! It's nice to know there is someone out there that has been throught the same thing! Let me know!

char1970's picture
char1970
Posts: 18
Joined: Apr 2004

yhi, i also had osteosarcoma of my right knee when i was 25. i'm 33 now and looking for others to talk to. what type of treatment did you have? i still have alot of pain and fatigue? What about you any limitations? looking forward to talking with you. email me at char1970@nycap.rr.com

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

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

shirleyjo49
Posts: 1
Joined: Feb 2010

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.

nemom4
Posts: 15
Joined: Mar 2010

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.

Bacci
Posts: 3
Joined: Jan 2012

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

lmay
Posts: 1
Joined: Aug 2006

I have rib cancer I can't tell you to much as far as symptoms other then they hurt from time to time.....It inhibits me from taking real deep breath. I have had radiation and now am on Votrient I noticed a little relief from radiation don't seem to be to bothering as much.
I also have kidney cancer mets in my pubic bone and right SI joint, sacrum, spine I think thats it. I am 73 yrs old and I handle the Votrient ok I get most of side effects however, I hang on for the CT when my Dr. tell me it is gone. The SI joint is quite painful I get along I just can't walk anymore the way I use to. I have dogs and my day weather permitting was walking my dogs I love to walk & garden, that ha come pretty much to a stop....

I was diagnosed in 1973 with kidney cancer in my right kidney which was removed, I went almost 12 yrs. it appeared agin in left kidney the Dr., took it out and I thought I was done.....Then the monster came back in the pubic bone & ribs....I still kept fighting and seeing how no surgery would work I kept trying to fight through it. The left pubic bone finally broke very painful.....then like a miracle it stopped hurting and then the right SI joint started bone scan sure enough it was in the right SI so back to radiation with no relief then my Dr. put me on Votrient I guess it shows tiny improvement on the ribs that was only 3 months after I was put on the drub so now I will get another ct in October and hopefully it will show more....

So, my that is my story, you have to roll up your sleeves and fight....There are many success stories on the web, keep thinking that you will be one.....Life is not easy just know that prayer does work.......Keep positive and pray and everynight thank god for the day and give you one more.

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

so great to hear so many have survived this cancer for so many years, I wish I could see this with other cancers, like mine , stage 4 b grade 3 endometrial cancer. and THANK you for giving a shout out about your survival on line SO MANY need to hear this , thanks !

cathy k

1maladywc
Posts: 9
Joined: May 2010

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

smartinez200
Posts: 3
Joined: Oct 2010

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.

mfhannah
Posts: 7
Joined: Mar 2012

I to have bone cancer from breast cancer. My left leg started hurting and they did xrays and found 2 spots. One on my left hip and on the bottom of my spine. I was then sent for pet scan and cat scan and then they found 12 spots. I took a year of zeloda and was just recently put on an estrogen blocker. Was told I was terminal. Just can't accept it. What kind of treatment are u going through. Would love to find out more about bone cancer and the effects on other people.

danettec54
Posts: 2
Joined: Jul 2013

I had breasted cancer in 2005 and cancer returned to my bones in 11/2011. I have spots from my toes to my skull. I take faslodex shots once month plus have been on xeloda for 4 cycles. how are you doing? My cancer is also hormone negative. I go to Md Anderson in Houston.

traveling_bones
Posts: 2
Joined: Nov 2010

I had low-grade osteosarcoma 10 months ago (age 23) so I had my knee and part of my femur replaced. Last month I slipped and fractured my femur. I have to wait until January to see if it heals, or if I have to have a revision on my prosthetic and start the process over. Tired of not being able to walk (let alone run like I used to).

FunnyFace's picture
FunnyFace
Posts: 15
Joined: Oct 2008

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!!

stepmom04
Posts: 12
Joined: Apr 2010

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.

Cancer Sucks
Posts: 2
Joined: Feb 2011

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.

MLC
Posts: 4
Joined: Sep 2011

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.

left tibia
Posts: 6
Joined: Dec 2010

Hi, I am looking for support of cancer in the tibia. Is that what you had? Would love to hear more details.
And would love to communicate.

FunnyFace's picture
FunnyFace
Posts: 15
Joined: Oct 2008

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.

crazy98
Posts: 25
Joined: Dec 2004

I had cancer in the left tibia. It was osteosarcoma!passingthetest98@aol.com or you can check out my blog http://ialwayswantedtoshavemyhead.blogspot.com/ I have had limb salvage surgery and a total of 3 knee replacements and 15 surgeries with 9 months of chemo.

maoberst's picture
maoberst
Posts: 11
Joined: Oct 2012

My daughter also had cancer in her left tibia. Just finished treatment in early Sept 2012. I can share all of her details or you can see her caring bridge site at:

www.caringbridge.org/visit/emilyoberst

I am here to help!
Melissa (Emily's mom)

starr21855
Posts: 1
Joined: Jul 2012

I need to help. I found out yesterday that I have a lesion on my tibia just below the knee on the left leg. I also have my thymas gland and it is enlarged. I had a pet scan done last week. Tomorrow I am having a mri and xray done. Should I be concerned? They mentioned doing biopsies. Any info would be helpful. Thank you.

lindemj
Posts: 1
Joined: Aug 2012

I saw your post. Did you get any results. My daughter who was 19 when diagnosed 2 years ago with a parosteal osteosarcoma. Our first opinion said amputation but we ended up getting 2 more. We ended up at the University of Chicago with a great doctor. Dr. Terrance Peabody( he is now heading up the bone and soft tissue section of Northwester Faculty Foundation).

Make sure you get several opinions before deciding on treatment if it is something.

I wish you the best!

crazy98
Posts: 25
Joined: Dec 2004

I was given that same option for amputation or limb salvage. I chose limb salvage. I started a blog talking about my joys and stuggles of survivorship. http://ialwayswantedtoshavemyhead.blogspot.com

maoberst's picture
maoberst
Posts: 11
Joined: Oct 2012

Thank you for sharing your blog!!!!!!

Melissa, Mom to Emily - Ewing Sarcoma Left Tibia fighter

davidzack
Posts: 1
Joined: Sep 2012

hello jaralea don't worries about it just believe in god and take right treatment. consult to your doctor time to time. thanks
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