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Osteosarcoma limb salvaging procedures

auntcat
Posts: 1
Joined: Jun 2009

We are trying to weigh options for my 9 year old niece who was recently diagnosed with Osteosarcoma of the distal femur. She is being treated at M.D.Anderson and they are advocating rotational plasty as an option due to increased functionality. I am looking for information regarding the "growable"/extendible endoprosthesis that works using electromagnetism. I understand it is less surgically invasive and leads to less infections and hospital stays. Has anyone had this surgery? What degree of functionality can be expected? Also there was a show that I missed on the health Channel "Incredible Medicals" on May 31st regarding a extendible replacement with a ceramic knee that was suppose to give much mre flexibily allowing basketball playing and increased activity. Did anyone see it or have info on where it is being done? Rotational plasty seems so extreme and radical and it is hard to remain objective. How much greater will the quality of life be with rotational plasty vs a traditional above the knee prosthesis? Also how does it compare to having "your own leg" even if that leg is partially titanium? Any reply will be greatly appreciated.
Thank you

howtrace
Posts: 1
Joined: Jun 2009

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.

shelbysmom69
Posts: 1
Joined: Jul 2009

My 13 year old daughter was diagnosed with Osteogenic Sarcoma in May 2009. She has currently undergone several chemo treatments and is reaching the end of a 10 week program in which they will be looking at limb saving surgery. Her tumor is located at the end of her femur bone right above the knee. It's approximate size is 4 inches.

We are meeting with her Orthopaedic Reconstructive Surgeon on July 22 to discuss the options they have regarding limb saving surgery and removing the tumor. Her tentative surgery date is August 14. Any and all feedback on your experiences would be greatly appreciated.

Yasidasi
Posts: 3
Joined: Aug 2009

Hi,

My 15 year old brother was diagnosed with Osteosarcoma this past June (2009). As his 24 year old sister with a biology degree I've been super involved and helping my mom manage everything. I'd love to talk to other older siblings or parents who have children in the similar stage of treatment.

My brother is in the middle of chemo and his "10-week" initial chemo treatments end around September 10th. His tumor is in a similar location: it's in his proximal tibia (right near his knee) and it's about the same size, at 3.5 inches.

He is targeted for surgery at the end of September. We are going for the limb-salvage surgery option and the surgeon might be using a novel technique called compression.

Would you like to exchange e-mail addresses?

Mine is ydrummond@gmail.com

Marie Carson
Posts: 5
Joined: Nov 2011

My 8-year old grandson is facing the same situation, but has been given the option for a rotation plasty. I hope your daughter is doing well after surgery. We are looking for feedback from others who have had the limb saving surgery so that we can make this difficult decison of which surgery to choose. Thanks

Marie Carson
Posts: 5
Joined: Nov 2011

I have all is well with your daughter. My grandson is going through the same situation and we need to make a surgery decision between the limb saving surgery and rotationplasty. Can you share your story with us as it would help us in making this difficult decision. Thanks

monyuzziel
Posts: 1
Joined: Jan 2010

hi I'm new here. my daughter is 7 years old and has osteosarcoma she was diagnosed on september 2009 i also decided to go with the limb salvage with expadable prothesis my daughter will have her surgery in a about a month , i would like to know how is you boy doing, was he in a lot of pain ? is he ok ? thank you very much and god bless your boy and your family.

please write back,

monyuzziel@hotmail.com

Marie Carson
Posts: 5
Joined: Nov 2011

My 8-year old grandson has the same situation as your son and is facing the question of limb salvage surgery or rotationplasty. Can you help us make a decision by telling us your story? Thanks

darshana525
Posts: 1
Joined: Jan 2013

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. 

luannf
Posts: 2
Joined: Nov 2009

Greetings,

My duaghter, 20, was diagnosed with OS in the left distal femur, 9/25/07, had limb salvage 11/07, (also had vastus medealus muscle removed because it had spread to her soft tissue), finished chemo 6/08, no mets, and is NED, Remission, No Evidence of Disease - Yeah!

She walks very well, with just the slightest limp sometimes. When she concentrates, she can walk perfectly normal, but that's usually too much bother. She walks all over the hilly UC Berkeley campus. She cannot run and jump, but that hasn't been a problem for her. She's very happy to have her real leg. However, for boys in general and girls who want to be active and athletic, rotation plasty or amputation might be a better option. Also, because she was fully grown, she did not have to have the expandable and more than one operation. For newly diagnosed OS patients, I have some important suggestions that I think are very helpful. I would be happy to send them to you.

Also, I wanted to say that I belong to a really great Osteosarcoma support group. www.ACOR.org, which is a cancer support site that covers pretty much all types of cancer.
You would joing the OS group. This consists of parents and patients, children and adults.
Great source of support and info. There's usually someone who has "been there, done that" and can tell you about their experiences.

MattMortin
Posts: 1
Joined: Nov 2009

Can you please help me out by giving me more info about limb salvage.. how much does it cost to have this surgery? pain? other than the full functionality of the leg why is it preferrable to amputation?

Thanks in advance :)

CariGonzalezJorden
Posts: 5
Joined: Dec 2009

I had Osteosarcoma and had the limb sparing surgery..I had a titanium rod place in my femur and partial knee replacement...there is an option that I've heard is great..they can place in a spring which allows the child to continue to grow another 3-5 inches! Titanium is a good option because it last 10-15yrs and is very strong..if you need to talk or have any questions email me at perfectlilpixie@yahoo.com

4mybrod
Posts: 1
Joined: Feb 2010

I have a 19-year old brother that has bone cancer. He was diagnosed with osteosarcoma in April of 2009 and had underwent limb salvage around September of last year. Prior to the surgery he had 3 chemos. He was to have 6 more chemotherapy after surgery, but after the 3rd session he said he was tired of the side effects and did not want to continue his treatments. After numerous talks with him he finally decided to push through with the chemo but the evening before his schedule he complained of chest pain, so instead of taking him to his oncologist my family took him to his pulmologist. They later found out that his right lung has 70% air in it. This is the second time that he had the same problem, the first time was before the surgery. He is in the hospital as I'm typing this.

My brother uses an assistive device (crutch)in order to walk. We plan on replacing the steel that they put in his leg with an implant that will enable him to bend his knee (which costs a tremendous amount of money). It may take years before we do that, but we will so long as my brother perseveres. Let us all hope for the recovery of those who are suffering from any illness.

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

I am new to this group and am trying to make the right decision for 0ur granddaughter.(who is 5yrs old now)
In April 2009, she was diagnosed with ostreasarcoma in the left femur. They put her on a 34week chemo treatment with surgery 10 weeks after first chemo. The surgeon stressed that a limb salvage was very hard on children, and she would probably have to have several surgeries and hospitalitions over the next few years. That amputation would give her much better quality life. We made the decision to have her leg amputated. She has done very well learning how to walk with her protheses. She has snow skiied, rock climb, and done what most normal kids do. She is a very happy kid. This last sept. 2010 she was diagnosed with the same thing in her right leg. In the very same spot. Now we have to make the same decisons. She is currently going through another round of chemo. Her surgoen suggest that we do a limb salvage. They don't think her survival is very good. The doctors feel that qaulity of life for her should be with a good leg.
We have heard horror stories from families about leg salvage. Constant stays in the hospital. Infections, Surgeries, no quality life.
Every story is different.
Please help us to make some good decisions for our granddaughter. She is going to be scheduled for surery some time in December.

4chicks
Posts: 2
Joined: May 2011

Hello,

My 9 year old daughter was recently diagnosed with osteosarcoma. Her tumor is in the lower femur. We are in our 6th week of treatment and surgery is scheduled for week 11. We are also looking at the expandable prosthesis, but are very concerned b/c my 9 year old is a dancer. We don't want to think that amputation is her only option.

I was wondering how your niece recovered, what procedure you chose to use and how she is doing?

Thank you for your info!

kimis50
Posts: 1
Joined: Jun 2010

My 26 year old son just finished 20 rounds of chemo and knee/partial femur replacement. He has done awesome. He has had no problems with his surgery or rehab.

kipperboy
Posts: 2
Joined: Sep 2012

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.

krispy2012's picture
krispy2012
Posts: 1
Joined: Apr 2013

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.

kipperboy
Posts: 2
Joined: Sep 2012

My 27 yr.old son has recently been diagnosed with OS of the left femur(previously survived Ewings sarcoma for 9.5 yrs.) The doctors are talking of 13 chemos, surgery, and another 13 chemos. Unfortunately, my son was in tremendous pain so we had to start chemo. We have an oncologist appt. next week to discuss things in more depth. My son had been treated at CHOP (Philadelphia) for his first cancer and they wanted to amputate his left leg; we did not choose this option and I know he will not allow amputation this time either. Just looking for some input from others, who have had similar situations. We're not thrilled with the present care he's receiving and have no problem changing oncologists (we're in the South Jersey/Philadelphia area). Thanks for listening.

crazy98
Posts: 25
Joined: Dec 2004

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

godbless2013
Posts: 1
Joined: Feb 2013

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
Posts: 25
Joined: Dec 2004

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!

Marie Carson
Posts: 5
Joined: Nov 2011

I hope you neice is doing well. How did it turn out for you. My 8-year grandson is facing the same questions. Can you tell me your story? Thanks

snapscan
Posts: 1
Joined: Dec 2006

My daughter had Limb salvage surgery in 2006, with 4 length adjustments surgeries since then. She is going just fine, walks with little limp, final length extension is due pretty soon. She is happy with her appearance and mobility, knowing the limitations.

Jp2011
Posts: 5
Joined: Nov 2011

Hey my name is Jatoiya and in Jan 2011 I was diagnosed with Osteosarcoma in the lower left mandible (the jaw) and the doctors at children's hospital in al did my limb salvaging surgery in april and they removed My right I can't remember what they called it but it's the smallest bone in the calf and placed it in my jaw which is so cool lol...but if anyone needs someone to talk to I'm here also, I just finished my 24 cycles of chemo and as of Nov 1st I am cancer free.

Jp2011
Posts: 5
Joined: Nov 2011

Hey my name is Jatoiya and in Jan 2011 I was diagnosed with Osteosarcoma in left mandible (the jaw) and the doctors at children's hospital in al did my limb salvaging surgery in april and they removed My right I can't remember what they called it but it's the smallest bone in the calf and placed in my jaw which is so cool lol...but if anyone needs someone to talk to I'm here also, I just finished my 24 cycles of chemo and as of Nov 1st I am cancer free.

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