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new member - bone cancer survivor

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

hi all, i am 33 and an 8 yr survivor of osteosarcoma of my right femur. i had pre-op and post-op chemo, limb salvage surgery, several other knee surgies including a total knee and recent total knee revision on 2/04, and most likely going to need another total knee replacement in near future. before my cancer i was a runner and a gymnast and have been very limited physically. i'm looking to connect with others. i live in upstate ny and there are no support services for young adults. been feeling very misunderstood and alone. i'd love to hear from anyone with similar situation to talk to. contact me at char1970@nycap.rr.com.

thanks char

Harborfield
Posts: 1
Joined: Apr 2004

Hi Char,

I'm trying to learn some information for my wife who had been diagnosed with cervical cancer a year & 1/2 ago. She's now being treated for her 2nd recurrence, which has spread to the bone. We are from PA, but is being treated in AZ right now. They are talking about a possible hemipelvectomy. She's 34, and was also a Gymnast and a runner. Currently she's very involved in yoga and was certified to teach yoga this past December. She has also expressed similar feeling of not having anyone here age/athletically minded to talk about her experiences and how to cope with readjusting.

I'm trying to learn about limb salvaging surgeries and approaches, donor bones and other alternatives to losing the leg and 1/2 the pelvis. Do you know where I can find any good info about these subjects? Can you tell me some of the institutions that are known for excelling in these areas?

Thanks,
Dave

thezerosystem
Posts: 3
Joined: Aug 2004

Hi, I'm 23, and I had my hemipelvectomy this January ('04). Lost my leg and the right half of my pelvis. This was due to chondrosarcoma. Dave, if you or your wife would like to talk, my email is aeneaendymion@yahoo.com. Please feel free to contact me any time. I'm always happy to talk with anyone about my experiences.

Take care,
Kristen

sml536
Posts: 6
Joined: Jul 2002

Dear Dave: My son had a hemipelvectomy at Massachusetts General Hospital - I believe they were the first hospital to have their own bone bank. They are very active in limb salvaging surgeries. They were and continue to be nothing short of the BEST in this field. I have my son to prove that fact- he is now 24 and it has been 3 1/2 years since his surgery. Thank God for the surgeons at Mass General! they saved his leg and he is leading a pretty normal life - although a bit limited physically. Nothing compared to if he had lost his leg! I believe the doctors at Mass General saved not only my son's leg but his life. It was also the second time he had bone cancer.

prettycece
Posts: 2
Joined: Mar 2004

Hi.

I also had surgery at MGH thay are the best I had my femur replaced...who was yoyr Dr.?? Was it Dr. Hornicek??

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

hello cece - would your name be celeste? as there is a member on the abcsurvivors.net site with similar info. would be a big coincidence.

i'd love to chat more. feel free to email me off line at zila1970@yahoo.com. take a look at the abc site if it's not your story there. i do apologize for the lengthly amount of time to reply.

charlene

sandahbeth
Posts: 2
Joined: Jun 2005

Hi I'm Sandahbeth. I need to talk with others about femur replacement. I have had an ongoing infection in my left leg for several years. This was due to a failed hip redo. It is not cured by meds and they keep debriding it but can not seem to get it all. They have removed my hip and my leg is much shortened. I heard there is a chance that a total femur replacement could be done. What are the problems? How many surgeries does it take? What are the likely complications? How much pain? How do I contact your doctor? The doctors here won't even talk to me about it. I feel very angery and afraid that I may lose my leg. I have no support group. I am hoping that some one of you will talk to me about this.

KPmom's picture
KPmom
Posts: 6
Joined: May 2003

Hey, I was reading the old boards today and ran across yours. I had Dr. Hornicek as well! I had part of my tibia replaced. I'm actually going in for my 6year appt next week.

jules4122
Posts: 1
Joined: Jun 2004

Hi char-like you, i'm an osteo sarcoma survivor. I was diagnosed in 1982, after having 2 children. Mine was in my right humurous, and how I envy that they saved your leg. You are most definately not alone. There are so many downs, but the ups are terrific! I guess I've never thought I needed anyone to talk to about this, but I've got tears in my eyes just reading your post. Email me at smrstick@rushmore.com and we can compare stories. Good luck to you, my new friend.

rwebb's picture
rwebb
Posts: 7
Joined: Mar 2002

Hi, I am 36 and a 3 year osteosarcoma survivor. See my web page on this site for more of the story. I would also love to hear from anyone with similar experiences and challenges. email rwebb3@yahoo.com

kejds
Posts: 1
Joined: Dec 2001

Hello, Char, and everyone else that has replied. I, too, am an osteosarcoma survivor- currently 21 years remission and I'm now 25 years old. I had a hemipelvectomy and limb salvaging surgery. All I have left is a limp due to a 6inch length difference. Would love to talk to more people about it! Kejds@aol.com

cathystelz
Posts: 5
Joined: Aug 2004

Dear kejds,
I am impressed with your 21 yrs. remission and would like to hear about your recovery experience. I also had a hemipelvectomy w/ limb salvaging surgery. I alternate between a walker and wheelchair. The MD's say it could take me as long as 2 years before I am strong enough to walk. I am an RN and floor nursing is definitely over for me - just as a new career must be in my future. First, I need to get some energy back. Thanks. Cathy

cathystelz
Posts: 5
Joined: Aug 2004

Dear kejds,
i would love to hear your experience. I too survived osteosarcoma with limb salvaging surgery. I am in a wheel chair currently with some time on the walker. I have shrunk already 3 inches since Feb. and have a huge lift on my shoe. How long did it take you to walk again? My entire left pelvis has been removed and I have had MD's estimate that it could take as long as 2 years before I will be able to walk. Thanks for sharing here. Hope to hear from other survivors as well. P.S. to those RN's out there, I am one also - but did not know a thing about osteosarcoma. Cathystelz

BionicNat
Posts: 3
Joined: Jul 2004

I'm 21 and had the same pre-op chemo, surgery, and post-op chemo. I finished 4 years ago. I had a knee and partial femur replacement and am very curious as to why you have had to have so many other surgeries. My knee is supposed to last the rest of my life. I can't believe you've already had to have another surgery after only 8 years. What's the deal? And I would highly recommend getting in the water to exercise. Your doctor will aprove.

marylidkea
Posts: 1
Joined: Jun 2002

Hi Char-I was 44 when diagnosed w/osteo, and had the same pre-op & post-op & limb-sparing surgery in Buffalo,NY.Are you around here? I'm only a little over 2 years out & my MD also told me there'd be most likely knee joint replacements ahead for me too. Most of my calf & thigh bones were removed & replaced w/titanium rods. I'd like to email if you want-my addy is: biedronka19@hotmail.com. Please be patient if it takes me a while to respond-we're moving this week. Take care, Mary.

cathystelz
Posts: 5
Joined: Aug 2004

Hi Mary,

I am 49 years old and had a total hemipelvectomy 2/04. I am currently struggling with the after effects of chemo (last day 6/22/04) i.e., numb hands and feet, fatigue, sore tongue and so on. Even as an RN I wasn't prepared for the consequences of this surgery. I too, like others, have shrunk 2-3 inches on my affected leg and must alternate between a wheelchair and walker depending on my energy level that day. I hope to some day walk again. I am, however, grateful to be alive. I hope others will get the same support found from ACS that I have, since we really are a rare bird. Hope your move went well. Thanks. Cathy

beanmama
Posts: 3
Joined: Dec 2004

Hi Char, I too went through the same kind of surgeries and chemo as you when I was 30. It has been 4 and a half years now and no sign of reoccurrance. But I was active too before, and now I walk with a limp due to lack of mobility and lack of muscle tone. My knee cap seems to move to the outside of my leg, I have already had two surgeries to correct that and now it is happening again. I have had 3 infections in my leg also, and have a very large ugly scar. I am feeling alone and misunderstood also, friends and family can only try and understand to a certain point. If anyone else out there has any advice or a story like mine, it would be great to talk to them. Char, do you have any kids?

Heather

smileytex
Posts: 2
Joined: Jan 2005

Hi all, I may be a new member to this group (36). I've had an MRI, discovered a large tumor in my tibia. Awaiting a bone scan at the end of this month. Long wait is because I am an disabled vet and that is the soonest available appt. What can I expect next? The MRI did not look good as the tumor extended out into the soft tissue. How did any of you discover that you had bone cancer? Heather, I have 4 young children (ages 1-10yrs.) I am scared, please email me at eva@mefulton.com. Thank you to anyone that replies.

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

hi heather, sorry for slow response time. Congrats on your almost 5 yrs NED (no evidence of disease). Bumbers about your bum knee. This too was a complication from my surgery and I've had a lateral release done twice. Do you have a total knee replacement (TKR)? My orginal TKR was slightly rotated inward which might have caused some of the knee cap issues. Since my last surgery 12/04 where part of my TKR was replaced and a button put on back of the knee cap the movement of my knee cap has greatly improved and I no longer toe inward nearly as much. What a relief. I did find my lateral release surgeries to help - my doc actaully put permanent sutures in to hold the tendons and ligaments in the right place. I hope since your post you have improved. I'd love to chat more. Feel free to email me off the list at zila1970@yahoo.com. Also, there's a new website for adult bone cancer survivors at abcsurvivors.net. my story is on the site.

charlene

Purplegal
Posts: 1
Joined: Sep 2008

Hi there! This is a very old post I realize, but I am a new member as well looking for support. I see some of us have very similar situations! I had osteogenic sarcoma in my right knee and partial femur at age 15, and am now 15 years out. I had the pre and post op chemo, and a limb salvage as well, with a human donor. That only lasted 4 years and then had a TKR, which has had nothing but problems. I've had about 8 surgeries to fix minor things, including adding the button for the knee cap like someone mentioned, and numerous loose pieces of plastic, cartilage, etc removed. My most recent was a year ago, doing a major revision of the lower part of the knee leading to the tibia, as it started wearing on my bone. It has not been the same since and I'm pretty bummed about it. I have a 2 year old daughter that was born via gestational surrogacy, since I am unable to carry a child due to heart medication I am on (thanks to the chemo I am sure).
So...there's my story and I'd love to chat with anyone that wants to!

Anna

CANCER SURVIVOR
Posts: 2
Joined: Oct 2008

Hi purplegal, lets hope all is well with you. reading your story made me think about me. I was diagnosed with osteosarcoma at the age of 16, 16yrs later I'm still alive and kicking. I get extremely depressed at times because I consider myself physically challenged. My cancer damaged my tibia in my left foot and has left me with a permanent foot drop. I have since given birth to a healthy boy who is now 7yrs old. Shortly after given birth I developed Congested heart failure , which was related to the chemo. I was taking heart meds but since now I have stopped with the advice of my cardiologist. If u would like to talk about your experiences I'm willing to converse with u.

jaj08
Posts: 1
Joined: Feb 2009

I am looking to talk with anyone who is a survior of osteogenic sarcoma. I am a long term survior of 17 years now. I was diagnosed at age 15 with a tumor on my right femur. I am now pregnant and would love to talk about the ability to have heatly babies after such toxic treatment. I would love to also encourage anyone who is facing this battle. I have had no reoccurences or secondary cancers.

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

Hi - it's great to hear that you are pregnant after osteosarcoma treatment! You are not alone either. While fertility is definitely not guaranteed, other women have gone on to have healthy kids after treatment. I've collected a bunch of their stories here:

http://www.abc-survivors.net/bone_cancer/pregnant-after-chemo

Maybe you'd like to share yours there too. :-) You can also join our support forum where you can chat with other gals who have gotten pregnant or who are trying after treatment.

Mary

KristinB
Posts: 1
Joined: Apr 2009

Hello
I am a 12 year survivor. I was diagnosed when I was almost 14 with osteosarcoma in my left femur. I had chemo before surgery and chemo after. I had an allograft done initially but after 2 1/2 years it never healed properly so I had a total knee replacement. I was told when I was 18 I would never have children from all the chemo (and I had an ovary removed- totally unrelated to the cancer). I now have 2 HEALTHY children! Ages 6 and 4! When I first got pregnant I was ecstatic because it was a miracle and then the fear set in. In the first few weeks I cried over the unknown of it my child would be healthy. But my doctor assured me the baby would probably be fine. And he was right I had a perfect 2 pregnancies and hoping there will be a 3rd. I would love to offer support to anyone or talk to survivors or anyone going through it now!

mrstaylor2009
Posts: 2
Joined: May 2009

I felt the same way!! I had osteo when I was 15. They told me I probably would never be able to have children. I have a 16 month old healthy baby boy!! I cried when I found out cause all I could think about was I hope I don't give him cancer!! I had two knee replacement surgeries. 14 surgeries total. I will have to have another knee replacement in the next few year i'm sure. Do you deal with daily pain in yours?

iskandar
Posts: 1
Joined: Sep 2009

Im from Malaysia..I think I have the same experience like u..After the limb salvage surgery my left foot droped..I diagnosed with osteosarcoma at age of 19 when im in military academy..I don't what I should write..Sometimes i feel depress..I dont know why god choose me..now im 20..

sigam
Posts: 2
Joined: Dec 2009

My daughter is 16 and had osteosarcoma on her left femur.
diagnosed in May 09.
Location :Singapore.
Hospital: National University Hospital.

I wonder how was your treatment in Malaysia.
Be cheerful.

I am looking for Osteo sarcoma patients who had Allograft surgery.
What are the limitations a patient has in terms of physical activity

mrstaylor2009
Posts: 2
Joined: May 2009

Char-

On mothers day this year I celebrated 10 year cancer free. I was also dx with osteosarcoma. I was 15 years old. Had limb salvage,I actually had two knee replacement surgeries,14 surgeries and chemo. Would love to chat!

beanmama
Posts: 3
Joined: Dec 2004

Hi Mrs. Taylor,

I am a 9 yr. osteo survivor. Char and I have been chatting for a few years now, which is nice to have someone who has been there to talk to. You can email me as well if you would like.

beanmama@aol.com

Heather

Yasidasi
Posts: 3
Joined: Aug 2009

Hi,

My brother just got diagnosed with osteosarcoma in his proximal tibia 2 months ago. He is almost done with his initial pre-surgery chemotherapy. He will have surgery at the end of September and then 7-10 months of post-surgery chemo. We are going for the limb-salvage surgery. There was a new piece of "equiupment" developed in 2004 and our surgeon might be using this on my brother. It's called a "compression implant" and helps so that a cement stem is not necessary. They will also keep his patella bone but have a knee "flap" to monitor the healing. We are all SOOOO nervous for this huge surgery. Especially my brother who is only 15 and just starting adolescence. It's very difficult. Anyhow, if you would ever be able to talk, my e-mail address is ydrummond@gmail.com.

Thanks!!!!!

chrisr2020
Posts: 1
Joined: Jul 2014

Hello,

This is my first post here.  My son was diagnosed with osteosarcoma back in february 2012 at nearly 13 years-old.  The tumor was located right in the proximal femur, inner side of the leg, right below the lesser trochanter.  He has had 3 cycles of MAP chemo prior to surgery, and another 9 or 11 cycles of MAPIE.  The surgery, may 2012, consisted of hip/partial femur replacement.  They have saved the greater trochanter which is now clamped on the prosthesis.  He is now 18 months out from last chemo and doing fine.  His legs are almost the same lengths and he can walk (with a limp), jump on trampoline, swim like a fish.  He can only walk short distances (10/15 minutes) before he feels soreness in his leg. We are not quite sure what to do next for him to keep on improving as his orthopedist surgeon seems very satisfied with the results and does not recommend anything special.  If you want to share stories, past or recent, please feel free to email me: moonscapes2020@gmail.com

I wish you all and your loved ones the best possible recovery and well-being.

Christophe

sigam
Posts: 2
Joined: Dec 2009

can you please share about your 14 surgeries. and chemo in detail

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