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Hopalong

Here's my story and I'm sticking to it!

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Let’s see, where doI start to tell my story….I’ll try to make it simple and short (but it will most likely be complex and long-winded.) I had a pain in my leg which started in March of 2006. This was about a week after I had some minor surgery. I went to my internist and he had me tested for a blood clot. No clot was found. I went to a couple of Sports Medicine doctors and a Spine specialist…who gave me lots of exercises and a few MRI’s and still found nothing…I even had a brain scan and was tested for MS because I was having trouble walking up stairs…I found out I do have a brain, but no MS. Finally, after about 5 months of having trouble walking with only slight pain, I had an X-ray and a bone scan which determined I had a break in my femur bone. Doctors were unable to see the break on x-rays because I had a “benign” tumor called fibrous dysplasia in my femur. (This benign tumor was known to me for the last 14 years after it appeared on an earlier X-ray.) My Doctor tells me to walk on crutches for the next six weeks, but that I didn’t need to cast my leg…Two weeks later, while going to the movie theater to see “The Devil wears Prada”, I trip on the carpeting and shatter my femur…I’m taken to the hospital where a rod is inserted into my leg with the hopes of my bone “knitting” back into place where the rod was inserted. No such luck…The bone started to disintegrate… 3 months later, my Doctor does not know why. I took the x-rays to a specialist and was told it most likely was cancer. Several tests and a biopsy later…while I’m sitting at home trying to watch the movie I rented, “The Devil wears Prada”…I get a call from my doctor, confirming it’s cancer and telling me I must go see an oncologist on the following day…I was too upset to watch the movie. Turns out I had osteosarcoma. Osteosarcoma is generally a childhood disease. A cancer which affects people from 16 to 30 years of age… I’m 52!...Turns out that one tumor in every hundred plus thousand people with fibrous dysplasia will turn into cancer…Lucky me…

I start chemo…Three non-stop days of chemo in the hospital. I make it through 2 treatments fairly ok…The third time was a charm!!!...It totally knocked me out. I was sick and lifeless…At home my blood levels dropped and I dropped too…I fell and broke my upper femur and hip…so now, rather than wait to see if the tumor was gonna shrink, (it was rather massive and had not shrunk after three chemo treatments), my doctors determined it would be best to amputate the leg. At the time, I was fairly ok with it…because the tumor was just so dang large, that I wanted it gone. So my left leg is removed. I became a hip disartic. (My hip and leg was removed)

I start rehab at the Rehabilitation Institute of Chicago and my rehab is just fabulous. There’s a reason they’re number 1 in the USA. I start to feel like a human being again…I’m getting stronger and the chemo fog is wearing off…I choose not to have anymore Chemo. I truly was afraid another dose or two would kill me…The biopsy of my leg showed that 90% of the tumor had died from chemo. It is my hope and my Doctor’s hope that the cancer was involved only in the tumor site. I’ve had two CT scans since and so far I am cancer free.

My leg was amputated in February. I am still waiting for my insurance company to approve my prothesis…Should be any day now. I am going to a prosthetist in Florida who is making a less cumbersome, new type socket for hip-disartics. Hopefully, I will be walking on two “legs” in the near future.

I’m just wondering if there are any other “old farts” out there who also got a childhood cancer in their so-called middle aged years. Any other elders who were diagnosed with osteosarcoma…I know we are a rare breed. But I would love to find others out there like me.

And in case you were wondering…I finally watched The Devil wears Prada several months later and nothing bad happened!

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I was wondering whether you ever got to see the movie or not. I haven't seen it yet - and now, not sure that I will. :rolleyes:

Much of your story sounds so familiar. MUCH, but not all. I also was 52, and lost my leg over mis-diagnosis, and wrong interpretations, but the similarity about ends there. Mine was strickly vascular. (Blood clots developed while they were trying to "FIX" it).

You sound like a trooper though who is hanging in there. I just wanted to say hello and wish you God Speed in getting back to.......what "normal" will be.

You'll be a great asset around here I believe - with your experiences .....AND your attitude.

Welcome

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Welcome to the site HopAlong,

Sounds like you'll fit right in here :P , Hey there's a band playing in South Bend, IN on the 22nd I was wondering if you'd like to go -- oh ya the band is named ---- The Devil Wears Prada. :blink:

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Welcome to the forum, Hopalong. I'm 59 and lost my leg almost 4 yrs ago due to an UNdiagnosed autoimmune disease. It's always something, eh? You'll find this a great place to visit and I know you will do well. Good luck.

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Guest bearlover

Hello Hopalong! I'm a LBK for 4 yeras now due to a bone infection and complications frorm a birth defect. I'm happy you found us..Looking forward to your post! :)

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Hi and welcome, Hopalong! Quite a history there... I hope they get you sorted out on the leg front soon. I don't know many hip disartics myself, but I know that fitting that level of amputation can be a challenge. I'll be interested in hearing about your socket design!

I'm a left below-knee myself... lost it about 2 1/2 years ago due to a series of nasty complications from a fractured foot that would not heal. I was 50 at the time... in fact, it came awfully close to being my 50th birthday "present!"

This is a great group of people... no matter what your question or situation, there's probably someone here who can relate!

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Let’s see, where doI start to tell my story….I’ll try to make it simple and short (but it will most likely be complex and long-winded.) I had a pain in my leg which started in March of 2006. This was about a week after I had some minor surgery. I went to my internist and he had me tested for a blood clot. No clot was found. I went to a couple of Sports Medicine doctors and a Spine specialist…who gave me lots of exercises and a few MRI’s and still found nothing…I even had a brain scan and was tested for MS because I was having trouble walking up stairs…I found out I do have a brain, but no MS. Finally, after about 5 months of having trouble walking with only slight pain, I had an X-ray and a bone scan which determined I had a break in my femur bone. Doctors were unable to see the break on x-rays because I had a “benign” tumor called fibrous dysplasia in my femur. (This benign tumor was known to me for the last 14 years after it appeared on an earlier X-ray.) My Doctor tells me to walk on crutches for the next six weeks, but that I didn’t need to cast my leg…Two weeks later, while going to the movie theater to see “The Devil wears Prada”, I trip on the carpeting and shatter my femur…I’m taken to the hospital where a rod is inserted into my leg with the hopes of my bone “knitting” back into place where the rod was inserted. No such luck…The bone started to disintegrate… 3 months later, my Doctor does not know why. I took the x-rays to a specialist and was told it most likely was cancer. Several tests and a biopsy later…while I’m sitting at home trying to watch the movie I rented, “The Devil wears Prada”…I get a call from my doctor, confirming it’s cancer and telling me I must go see an oncologist on the following day…I was too upset to watch the movie. Turns out I had osteosarcoma. Osteosarcoma is generally a childhood disease. A cancer which affects people from 16 to 30 years of age… I’m 52!...Turns out that one tumor in every hundred plus thousand people with fibrous dysplasia will turn into cancer…Lucky me…

I start chemo…Three non-stop days of chemo in the hospital. I make it through 2 treatments fairly ok…The third time was a charm!!!...It totally knocked me out. I was sick and lifeless…At home my blood levels dropped and I dropped too…I fell and broke my upper femur and hip…so now, rather than wait to see if the tumor was gonna shrink, (it was rather massive and had not shrunk after three chemo treatments), my doctors determined it would be best to amputate the leg. At the time, I was fairly ok with it…because the tumor was just so dang large, that I wanted it gone. So my left leg is removed. I became a hip disartic. (My hip and leg was removed)

I start rehab at the Rehabilitation Institute of Chicago and my rehab is just fabulous. There’s a reason they’re number 1 in the USA. I start to feel like a human being again…I’m getting stronger and the chemo fog is wearing off…I choose not to have anymore Chemo. I truly was afraid another dose or two would kill me…The biopsy of my leg showed that 90% of the tumor had died from chemo. It is my hope and my Doctor’s hope that the cancer was involved only in the tumor site. I’ve had two CT scans since and so far I am cancer free.

My leg was amputated in February. I am still waiting for my insurance company to approve my prothesis…Should be any day now. I am going to a prosthetist in Florida who is making a less cumbersome, new type socket for hip-disartics. Hopefully, I will be walking on two “legs” in the near future.

I’m just wondering if there are any other “old farts” out there who also got a childhood cancer in their so-called middle aged years. Any other elders who were diagnosed with osteosarcoma…I know we are a rare breed. But I would love to find others out there like me.

And in case you were wondering…I finally watched The Devil wears Prada several months later and nothing bad happened!

Hi hopalong - I lost my leg from a blister in Nov of 2005, RBK- you are just a youngster I'm 63. I do like your attitude. Good luck

JudyH

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And in case you were wondering…I finally watched The Devil wears Prada several months later and nothing bad happened!

Of course nothing bad happened, after all .............. it was a comedy. :P

Welcome Hopalong. Peace

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[Of course nothing bad happened, after all .............. it was a comedy.

So is my life...for the most part!!!! :D At least on a Good Day!!!! :blink:

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Welcome to our little "home" :D

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Welcome to the forum Hopalong. If you have any other questions, feel free to ask, hopefully someone will have an answer..

I'm a LBK due to trauma.. but, I've had my own bout with cancer..

Hang in there.

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I am new here too.

The welcome and support that is here is tremendous.

Screen names to unseen friends.

Good luck with the progression

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Hi and welcome to our forum family. I'm Ally, RAK from South Africa - car accident 12 years ago.

I would also be interested in hearing about your socket design. I have a friend who is a HD (also from cancer) and his prosthesis does look cumbersome, so if you get something more nifty.....love to hear about it.

Enjoy your stay with us,

Ally

:)

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Hi, Hopalong!

I agree with the others.... you are no old fart! 50 is the new 40 you know! :)

I lost my leg to osteosarcoma at age 13. At that time, chemo wasn't heavily used, and I didn't get it. Obviously it worked out OK as I have been cancer free since then. I was told that one "good" thing about some osteosarcomas is that they stay localized to the bone for some time before spreading into the blood stream.

By any chance is the guy you will be seeing in Florida named Stan Patterson? I live in Orlando and he is my prosthetist. He is doing awesome things with hip-disarticulates. One of the guys I know walks as well as, if not better than I do (I'm AK).

Welcome to the HMM board! You've come to the right place. These people have held my head above water during some tough times. A very compassionate and knowledgeable bunch they are!

Karen :-)

AK

Orlando, Florida

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I lost my leg to osteosarcoma at age 13. At that time, chemo wasn't heavily used, and I didn't get it. Obviously it worked out OK as I have been cancer free since then. I was told that one "good" thing about some osteosarcomas is that they stay localized to the bone for some time before spreading into the blood stream.

By any chance is the guy you will be seeing in Florida named Stan Patterson? I live in Orlando and he is my prosthetist. He is doing awesome things with hip-disarticulates. One of the guys I know walks as well as, if not better than I do (I'm AK).

Karen :-)

AK

Orlando, Florida

Thanks for making me feel good about my decision not to continue the chemo. I really am hopeful that the cancer did not spread. The only thing that worries me a little. is that the Doctor actually skewered the tumor when he put the rod in my leg...hopefully, he didn't spread the cancer by doing so. For some reason I don't feel like a cancer patient...Pretty much I'm in denial, that way I don't think or worry about it...

And yes Stan is the Man! I haven't met him yet, but I'm told he's the one to go to for AK or HD amputations. I was told that many vets from Walter Reed have been sent to him, and like you say, he is doing awesome things with hip-disartics. Looking forward to trying his new socket.

Lorri

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One of the guys I know walks as well as, if not better than I do (I'm AK).

<_< mmmmmm, I've seen you walk and if this HD is doing as well as you, then he is doing fab!

Oh, and while I am hijacking the thread for a bit (sorry Hopalong), thanks to you my dear, my CP no longer has any patience with me when I complain about donning a socket with cream (I loathe it)! He just rolls his eyes and says 'Karen does it this way you know'. Yeah right....thanks a ton... :P :P

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Just wanted to add my welcome - I'm a LBK due to congenital deformity.

i have just bought the Devil Wears Prada to read on the plane in December so I just hope nothing goes wrong in mid air!!

Sue

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One of the guys I know walks as well as, if not better than I do (I'm AK).

<_< mmmmmm, I've seen you walk and if this HD is doing as well as you, then he is doing fab!

Oh, and while I am hijacking the thread for a bit (sorry Hopalong), thanks to you my dear, my CP no longer has any patience with me when I complain about donning a socket with cream (I loathe it)! He just rolls his eyes and says 'Karen does it this way you know'. Yeah right....thanks a ton... :P :P

Okay, what did I miss? Have you and Karen been together comparing notes? :blink: And we didn't know about it? :blink:

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Hi Hopalong,

Welcome to this forum, it has helped me a great deal and provides me with a community who knows the challenges we face--and the joys of a good leg and socket.

I am a newbie and a RBK from car accident 2003, but my ankle would not heal, so I had the amp in Nov, 2006.

Peace, Beth Marie

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Welcome! You've found a great place to talk with others in similar situations... Glad you found us. Keep us informed as to how your fittings go and such.

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Welcome! You've found a great place to talk with others in similar situations... Glad you found us. Keep us informed as to how your fittings go and such.

Well Marilyn I finally did it.... :blink: wrote a very poopy, but honest letter to Hanger. Just told them the truth about my prosthesis not fitting. Do you think I will get a reply and a new one made that is comfortable?

We'll see :excl:

"Hopalong'

Welcome 'Hopalong' grab a chair & a cup of coffee (or whatever) you drink and join right in...these guys & gals have finally given me the courage to speak up for myself. ;) they are a great bunch and will give you all the knowledge and comfort you need.

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Guest bearlover

Welcome! You've found a great place to talk with others in similar situations... Glad you found us. Keep us informed as to how your fittings go and such.

Well Marilyn I finally did it.... :blink: wrote a very poopy, but honest letter to Hanger. Just told them the truth about my prosthesis not fitting. Do you think I will get a reply and a new one made that is comfortable?

We'll see :excl:

"Hopalong'

Welcome 'Hopalong' grab a chair & a cup of coffee (or whatever) you drink and join right in...these guys & gals have finally given me the courage to speak up for myself. ;) they are a great bunch and will give you all the knowledge and comfort you need.

In defence of Hanger I love Hanger!! They helped me so much..I have a wonder. awesome prosthetist who I just love, I don't think its hanger but the prosthetist? I had a really lousy poor prosthetist and wasted 1 year with him. Thankfully I found Hanger and they are wonderful the whole staff is excellent..Its not Hanger but maybe a poor prosthetist that works for Hanger. :)

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In defence of Hanger I love Hanger!! They helped me so much..I have a wonder. awesome prosthetist who I just love, I don't think its hanger but the prosthetist? I had a really lousy poor prosthetist and wasted 1 year with him. Thankfully I found Hanger and they are wonderful the whole staff is excellent..Its not Hanger but maybe a poor prosthetist that works for Hanger. :)

Whatever or whoever it is, they need to know about it. If you don't hear back from them, Ann, make an appointment, go in and tell them. They need to make it right for you.

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Well Marilyn I finally did it.... :blink: wrote a very poopy, but honest letter to Hanger. Just told them the truth about my prosthesis not fitting. Do you think I will get a reply and a new one made that is comfortable?

We'll see :excl:

IF....... I am right - It is my understanding that Hanger Company has bought out a lot of independents, and let's them continue to operate under the Hanger banner.

Even though they have the name, they still are no better than the one who runs the shop. We all know good and bad mechanics - plumbers - painters, and yes, even doctors. Why shoudl the CP's be any different. They are the good - the better - and the best.....oh yes, the so-so, the bad, and the really bad,

Just like everything else. The trouble with company's like Hanger that put their name out like that is that a jerk in New York (for instance), can make a good Hanger CP in California look bad.

GO FOR THE PROSTHETIST. NOT FOR THE COMPANY NAME.........unless the company has such high standards that it holds it's individual managers to. I haven't consistantly heard that in this case - but I have heard of a lot of good Hanger CP's - and some not so good.

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Guest bearlover

That's exactely what I'm trying to get across Jim,If my current prosthetist worked for a diferent company he would be the same wonderful person I did say its the prosthetic not the company..I had a real poor prosthetist in the begining I switched and found a great one who happens to work for Hanger.

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