Osteosarcoma in an adult

louisevruiz said:

10 years remission from fibroblastic/osteogenic sarcoma!
Hello,

I will celebrate 10 years of remission in August 2009. My final diagnosis was fibroblastic/osteogenic sarcoma. My orthopedic oncologist surgeon is located at USC Health Sciences campus in Los Angeles. His colleague and my oncologist is located at UCLA! Both men are incredible. They saved my leg and then my life.

I had 10 months of cysplatin and adriamycin, direct chemo into the 15 cm. tumor on my fibula then limb salvage surgery! I lost my fibula and perineal nerve. I then had Interferon treatments for 2.5 years to rebuild my immune system. I have to wear an orthotic on my leg to facilitate walking, but I walk well.

It has been an uphill battle. I am happy to be alive and cancer free. Continue to ask questions and seek information. Aggressive advocate for yourself or for the patient you are supporting!

Louise

tralbertson said:

Osteosarcoma
I was diagnosed with osteosacoma last year when I was 38. It was in my humerous and was only found because I started losing strength and feeling in my arm and hand. It was so advanced the Doctor's wanted to remove my arm at the shoulder. Luckily I live in North Carolina and my Doctor said I should go to Duke for a second opinion on the treatment. The Doctors and staff at Duke Medical center were awesome. They offered an experimental surgery that had only been done on two children previously and never on an adult to save my arm. I agreed to give it a try. They removed the majority of my humerous,all of my brachialis muscle, my radial nerve, and portions of my bicep and tricep. They took fibula bone and a nerve from leg and put it in my arm with a few plates and screws to hold it in place. This surgery too 18 hours and weeks of recovery of which I remember very little due to very strong drugs. Unfortunately, this first try was only partially successful the top of the bone graft worked and it attached with my shoulder. The bottom however didn't attach to my elbow. The nerve graft also failed and I lost the use of my hand. They schuled a second surgery. In this surgery they took a piece of my hip bone and put in at the elbow hoping this would attach me elbow to the fibula in arm. Also during this surgery the did a tendon transfer surgery on my forearm to give me limited use of my hand again.

Bacci said:

Adult Osteosarcoma
Hi Louise,

I am now taking cysplatin and adriamysin. The side effects seem so horrible for me. Can you let me know if this combination was the cure all for you. This is the doctors third attemt for me. thank you for any info. God Bless.....your continued healing....my e-mail if you wish to write is roxyro1@yahoo.com

Bacco

tweenlives said:

Osteosarcoma of the rib or in the chest area
I am curious as to how many adults posting on this subject happen to have COPD and are/were using Advair or another corticosteroid before the cancer diagnosis. Osteosarcoma is rare enough and, of course, in the rib and chest is even more so.

FightingTheDemon said:

Periosteal Osteosarcoma in Rib (f, 30, mother)

Hi, my wife just got diagnosed with Intermediate Grade Osteosarcoma in her rib.  She is the mother of our 1yo daughter and we are freaking out... 

 

She had been sick on and off with coughs, sinus infections, bronchitis type of things for two months (dr.s thought, although not sure if the recent diagnosis changes things, that this is unrelated).  Our daughter kept bringing home germs from daycare...  During a chest xray that we had asked for, they found a tumor on her rib.  Were referred to a local thorasic surgeon who said his reccomendation is to remove the rib.  He thought it was most likely a benign chondroma or possibly a chondrosarcoma, and either way it has to come out, so why risk it.  I am hoping this isn't an unrecoverable mistake...  We found out afterwords that it is in fact an intermediate grade osteosarcoma.  We are waiting to hear from Sloan as far as next steps. 

 

It may be worth mentioning that she had been diagnosed with a Fibrous Dysplasia ~5 years back (we now hope they were right).  They did a full body bone scan at the time.  We think the dysplasia is now gone.  Also, this Osteosarcoma was discovered with a chest xray, we did another chest CT which looked clean except for this tumor, and an MRI of the liver.  The liver had 2 benign (they are now taking another look) lesions.  We think the next step is a full body PET scan. 

 

The Surgeon said the tumor came out very clean.  The lung plura was slightly attached when he took it out and required a stitch or two, but didnt think it invaded the lung. 

 

This seems to be so rare and hard to find any good information.  It seems that you guys have fought, and beat, this terror.  Any advice, contact, lessons learned, thoughts..  Anything is appreciated.  Thank you in advance and I wish anyone struggling with this all the best.

Hi Fightingthedemon,

I am so sorry your wife and family has to go through this.

My story has some similarities so I thought I would share it with you. I am 36, mother of 2 (18mo son and 3 yo daughter. I was diagnosed with soft tissue sarcoma in my left thigh last june. I had radiotherapy in the summer, and surgery for the removal of the tumor in september. Following the analysis of the whole tumor, I got a final diagnosis of osteosarcoma.

My doctor explained that for that type of cancer, we usually do not do radiotherapy (although my tumor had a good response to the treatment), but we usually do 3 cycles of chemo before surgery and 3 after. I ended up having the 6 in a row.

The chemo protocol for osteosarcoma is pretty rough, with higher doses than with other cancers. That also means more side effects, although it varies from one person to the other.

My husband and I were in shock when we initially got the diagnosis, and felt like things were getting from bad to worse. I initially thought about my children, and how if I didn't survive, they wouldn't remember how much I loved them.

I hope I don't sound too negative. That's not my intention. I want to validate all the feelings that you and your wife must be dealing with right now.

During treatment, I tried not to think of the future, or of how I felt about cancer, and just decided to let myself drift through treatments, with all the help I could get. My husband has been my rock, and my parents were really helpful in trying to keep things normal for the kids. There were days where I didn't think I would make it through, but I did. I had a great team of doctors, who adjusted the medication to manage the side effects as much as they could.

I'm assuming that they will offer chemo to your wife. 

My pieces of advice... Accept ALL the help you can get. It takes more courage to do so than to try to do it all on your own. Tell your wife to take all the meds she can to manage the side effects and not to wait to do so. Try to keep a few social outings for yourself. 

If you have specific questions I'd be happy to share more.

Just remember, the next months are going to be hard, but you're going through that for a happy cancer free future. That's the ultimate goal!

Hope that help!