Osteosarcoma limb salvaging procedures

darshana525

howtrace said:

Limb Salvage
My son has a bone tumor in his lower femur (Osteosarcoma) - He is 8 yrs. old.
We have researched both surgical methods and decided that the limb salvage with expandable
prosthesis is the best option for us. Rotational plasty also felt extreme to us, especially for a younger child. You may want to consult with Dr. John Dorman's at the Children's Hospital of Philadelphia. He specializes in Limb salvage surgery and has had great success with the expandable implants. My son will be undergoing this surgery next month by Dr. Dormans. The outcomes and quality of life with this device are extremely positive.
I'd be happy to provide info. if needed. Best of luck to your niece.

7 yr old son

Hello,

My son has recently been diagnosed with Osteosarcoma in his lower femur as well.  He just received his first treatment of chemotherapy.  I wanted to find out from you how your son's surgery went and how he is doing.  If you wouldn't mind, I would love to get in contact with you.  I would really appreciate if we can exchange email and talk.  My email is: darshana.pandya1@gmail.com Thanks you very much. 

godbless2013

crazy98 said:

osteo survivor
I would love to talk with you about my experiance with limb salvage and osteosarcoma. I am 29 years old and am a 13 year survivor of osteosarcoma! Passingthetest98@aol.com and I have a blog http://ialwayswantedtoshavemyhead.blogspot.com/.

Tiffany

My 16 years old daughter with osteogenic sarcoma
Dear Tiffany
Thank you for sharing your story. It is giving us hope.My daughter recently diagnosed with osteogenic sarcoma of the distal femur.All investigations are negative for metastasis.She is going to start chemotherapy next week.She is going to have knee salvage procedure in 10 weeks.We are so worried about her.I am wondering if there are any different metal prothesis to use and how is her life is going to be.
Are you aware of any new development in this regard.

I do appreciate your response.

Thank you.

crazy98

godbless2013 said:

My 16 years old daughter with osteogenic sarcoma
Dear Tiffany
Thank you for sharing your story. It is giving us hope.My daughter recently diagnosed with osteogenic sarcoma of the distal femur.All investigations are negative for metastasis.She is going to start chemotherapy next week.She is going to have knee salvage procedure in 10 weeks.We are so worried about her.I am wondering if there are any different metal prothesis to use and how is her life is going to be.
Are you aware of any new development in this regard.

I do appreciate your response.

Thank you.

Limb Salvage surgery

That is great news to hear it is localized and not anywhere else!! My tumor was located in my tibia. I have had a total of 3 knee replacements. The first one was done several months after starting chemo. They try and do chemo first to shrink the tumor as much as possible. Mine did not respond as well and even though it shrank it didn't not shrink enough, so they had to do the total limb salvage of the knee. The first surgery they use a cadaver (spelling?) bone. This proved to be more trouble then it is worth. If I had to do over again I would forgo the bone and stick to straight metal. I suffered from infection about 6 months after my first surgery and had to have the whole thing redone. :-( While this is not in every case and I don't want to freak you out it is a possibility when you have a foreign object in your body. Infection is a HUGE factor in your daughters recovery. Try and do whatever possible to stay away from it and be aware of the wound and the signs of infection. That replacement lasted a good 12 years. Depending on how old your daughter is will determing if they need to use limb lengthing rods. I was 15 and pretty much done growing at that point so I did not have to go throught the painful process of doing a limb lengthening procedure.  My last replacement probably would have lasted alot longer if I would have taken better care of it when  I was younger. Going wake boarding was NOT on the approved list of things I could do, but I was out to prove a point. Needless to say after 12 years it just wore out and I recieved my 3rd full knee replacement last september. I am fully recovered and doing wonderful now! I still have daily pain but it is managable.

Limb salvage is not an easy road. It is not something that when the cheom stops and the hair grows back your life resumes as normal. Limb slavage is a life long maintenance process. Technology is sooo much better now then it use to be but still it requires "tune ups". I often wonder what life would be like if I would have chose the amputation route...then I see my own two feet and am thankful I have tried so hard to save it!! However tired, worn out and scarred this limb of mine is, it tells a story. My story. I would love to talk more about specifics if you would like! My email is passingthetest98 at aol dot com and I have blog talking alot about my journey through cancer. ialwayswantedtoshavemyhead.blogspot.com I hope to hear more from you!

krispy2012

kipperboy said:

mother of OS pt looking for advice of limb salvage surgery
my 27 yr.old son has recently been diagnosed with OS of left femur (previously survived Ewings sarcoma same femur for 9.5 yrs). The dr.wants to do chemo for 13 weeks, then surgery, and then 13 weeks of chemo again. We're meeting with the oncologist next week to discuss everything more in depth. Unfortunately, my son was in pain so we had to start some type of treatment so we did start chemo. However, when they've mentioned surgery, they are not specific. During my son's first cancer, the doctors at CHOP (philadelphia) wanted to amputate;we did not let them. So, here we are again and my son definitely will not let them take his leg. I'm looking for some feedback from others who have been there. Thanks so much for any input.

my experience.

After my surgery where my knee and bones werereplaced with a metal one ,I only did one chemo and said no more.  I then went to a wellnesss clinic for a month of vitamins C and other infusions, diet control and oxygen therapy.  I have been xrayed twice since then with nothing showing up in the lungs.  I have continued Vit C infusions in my home town and changed my diet to no sugar, nor dairy, no fast food or preservatives.  No white flour, mostly I eat protein and vegetables and fruit.  I will have another checkup at one year.  A;sp, I use subliminal tapes, prayers friom all sorts of family and friends and continue the Vitamin C infusions.  also I have lost 20 pounds and still losing.

kB1020

What did you decide?

hello.

 

we are having the same issue here .. What did you guys end up deciding to do??

 

kara 

Hpadgett23

crazy98 said:

Limb Salvage surgery

That is great news to hear it is localized and not anywhere else!! My tumor was located in my tibia. I have had a total of 3 knee replacements. The first one was done several months after starting chemo. They try and do chemo first to shrink the tumor as much as possible. Mine did not respond as well and even though it shrank it didn't not shrink enough, so they had to do the total limb salvage of the knee. The first surgery they use a cadaver (spelling?) bone. This proved to be more trouble then it is worth. If I had to do over again I would forgo the bone and stick to straight metal. I suffered from infection about 6 months after my first surgery and had to have the whole thing redone. :-( While this is not in every case and I don't want to freak you out it is a possibility when you have a foreign object in your body. Infection is a HUGE factor in your daughters recovery. Try and do whatever possible to stay away from it and be aware of the wound and the signs of infection. That replacement lasted a good 12 years. Depending on how old your daughter is will determing if they need to use limb lengthing rods. I was 15 and pretty much done growing at that point so I did not have to go throught the painful process of doing a limb lengthening procedure.  My last replacement probably would have lasted alot longer if I would have taken better care of it when  I was younger. Going wake boarding was NOT on the approved list of things I could do, but I was out to prove a point. Needless to say after 12 years it just wore out and I recieved my 3rd full knee replacement last september. I am fully recovered and doing wonderful now! I still have daily pain but it is managable.

Limb salvage is not an easy road. It is not something that when the cheom stops and the hair grows back your life resumes as normal. Limb slavage is a life long maintenance process. Technology is sooo much better now then it use to be but still it requires "tune ups". I often wonder what life would be like if I would have chose the amputation route...then I see my own two feet and am thankful I have tried so hard to save it!! However tired, worn out and scarred this limb of mine is, it tells a story. My story. I would love to talk more about specifics if you would like! My email is passingthetest98 at aol dot com and I have blog talking alot about my journey through cancer. ialwayswantedtoshavemyhead.blogspot.com I hope to hear more from you!

I am a 19 year osteosarcoma

I am a 19 year osteosarcoma survivor with limb salvage of right knee.  I have felt the same way so many times about keeping my  leg or having it amputated due to the fact that I just get tired of going through the tuneups and the pain. So your story made me laugh as I was 15 at my diagnosis and wanted to prove a point that I could still run and play basketball, but that was short-lived when I realized I physically couldn’t do it  I have had several surgeries to fix things or replace wore out hardware and take scar tissue. I’ve also been through three pregnancies   By which the weight gain from that makes the knee respond differently. I feel like I can’t catch a break sometimes, However I am still here and I work as a physical therapist assistant and try to be the best therapist and parents I can possibly be.

jacobmom

Hi. My son is 11 and Dx with

Hi. My son is 11 and Dx with Osteosarcoma in September. We are alomost done with chemo, yet his bone salvage surgery did not go well. He has an infecton on the cadevor bone and I am very worried about the next step. Any input of options available? We will probably need to remove the cadever and replace with what????  Surgeons in NY?

 

Baltimore1944

Limb salvage surgery at 70

I had osteo sarcoma on my tibia below my knee at 70  any posts relevant

mamaw2014

My 8year old little boy was diagnosed in September with Osteosarcoma in his left femur we chose to have the limb salvage surgery using the hinge which is magnetic and will grow with him they said he may have to have another surgery in 10 to 15 years later. His surgery is the 28th of this month and I’m a wreck. We go next Friday for his PET Scan before surgery so yeah a hot mess.

mwunder

https://csn.cancer.org/discussion/comment/1704060#Comment_1704060

I had a total knee replacement 10 years ago and am very scared for the surgery to follow. My orthopedic surgeon told me, however, that the beauty with this medicine is that it is always evolving. I think I have another 10 years until I have to think about another surgery. Time flies; I am 26 now. But, it does cross my mind often.

mwunder

https://csn.cancer.org/discussion/comment/1599834#Comment_1599834

Such a similar saga. Was determined to make it back to cheerleading. My oncologist told me you will never do that again and you will lose your hair. I’m thankful he was so real with me. 10 year knee replacement and scared about when I will have to get it redone/pregnancy.

peglegthegreat

https://csn.cancer.org/discussion/comment/1151802#Comment_1151802

Hi! I had a rotationplasty done a few years ago now. It definitely was a difficult decision for 10 year old me to face but ultimately I made a pros and cones list for each option. For me I wanted to remain active but a limb salvage did not allow for that. A traditional amputation would be hard on my hips as I got older so for me I chose the rotationplasty. It was super difficult getting back on my feet because I had a disorder before cancer that messed with my recovery but in all I’m glad I got the surgery. A big thing though is letting him choose for himself because he will have to live with that for the rest of his life. Make sure to talk him the all of the options and make a list. I wish y’all good luck and I wish him the best going through with his treatment.