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Bone Cancer: Adamantanoma



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heatherk_28

				          
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        			    October 15, 2002 - 3:36pm			  			

			
			
Hi, I am new to this chat group.  I am looking for others who have had a rare bone cancer called Adamantanoma.  Often, this type of cancer can be found in the jaw.  Mine was in my left tibia.  If anyone knows where I can get information/research, please let me know!  Thanks!


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shelly9501

				      
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October 24, 2002 - 6:07pm

			
RE: Bone Cancer: Adamantanoma
			
Hi, I had a rare bone cancer too, it was called Ewings Sarcoma, NOT adamantanoma, but mine was in my left tibia.  Did you have a limb-sparing surgery?

How is the prognosis,


Shelly:o)



			
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mandy85

				      
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	        Joined: Jan 2003

	      
	    				
		
			
January 19, 2003 - 7:08pm

			
Re: Bone Cancer: Adamantanoma
			
Hi! I also had adamantanoma. Luckily, my first visit in the hospital I met another kid who also  had it so from the very beginning I've been very informed of what the disease entails. I also had it in my left tibia and had an allograft transplant in 1999. I've looked at a few web sites and they all say the same thing. It's a rare cancer and nobody really knows where it came from. Oh well. I hope you're doing well now =)



			
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Bob Barrett

				      
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June 9, 2009 - 5:39pm

			
Please help with any good info.
			
     Hello, Found out in Dec 08 Left Ulna. Removed Jan 30th. Just found

     it has gone to same arm lymph node unsure what to think about this

     aswell could use some helpful words of hope...Bob



			
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KatlynP1994

				      
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	        Joined: Apr 2009

	      
	    				
		
			
April 15, 2009 - 9:07pm

			
I had it too...
			
i had adamantinoma too, I had surgery in 2003 where they took out 7 inches of my tibia and replaced it with cadaver bone + 2 metal rods and held it together with 15 screws..since its been awhile since u posted, how's the prognosis? Any other health problems?



			
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Bob Barrett

				      
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	        Joined: Jun 2009

	      
	    				
		
			
June 9, 2009 - 5:32pm

			
Also new looking for any help Adamantinoma
			
Hello,  I also am new at this. I found out back in Dec 08. location left Ulna.

        Had it removed Jan 30th,09. I was told just today that it has moved to

        same arm lymph node. If you have any hopeful words sure would help...Bob



			
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andy63

				      
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June 10, 2009 - 8:46am

			
I too had adamantinoma
			
Mine in my right tibia part cut out 2years and 3months back still trying to walk.  Keep your chin up Bob, my philosophy:  Don't worry about the things you can't change work on the things you can. I went in for 1 op and a week in hospital and it ended up 3months in hospital and 7 surgeries.  Get all the information and options from your doctors to make the best decisions.  Unfortunately I found out, the patient is the only one to make the decision on what to do for themselves.  Its hard but with the right info you can do it.



			
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Bob Barrett

				      
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June 10, 2009 - 4:52pm

			
Thanks for reply... Your right about the decisions.
			
       Andy, Thanks for the reply. found out yesterday that it's in my

       lymp nodes. They ( the Doc's ) seem to think that since Chemo or

       radiation don't seem to have any effect that my time frame is around

       3 to 5yrs. Would you have any info on that subject or where to go for

       up to date info. Once more thanks for your reply........Bob



			
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andy63

				      
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June 11, 2009 - 7:00pm

			
Info is hard to get
			
I am in Australia and because our tumors are rare and little known about the adamantinoma I had to rely on my doctors for all the information.  I could only find info about my treatment (involving case studies on other patients) not about my condition  That is one reason I am on this site as I can not find anything or anybody to talk to about this in my country. I have a sister who works in a library and can access some of the medical sites for me if I want but I don't like to fill my bead with unnecesary clutter. I found this changed my whole thoughts on the way I see things;  I think my life it getting back on track now other than the doctors visits and xrays to check there are no more little surprises; and I choose to enjoy everyday the way I want to.  My friends and family don't see me as much and we don't always agree on things because now I spend my time with my partner and children and doing the things we want to do not what everyone else wants to do. Time is precious, no matter how small my wants and dreams are I don't put anything off now I put it on my calender and do it.



			
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Bob Barrett

				      
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June 10, 2009 - 4:52pm

			
Thanks for reply... Your right about the decisions.
			
       Andy, Thanks for the reply. found out yesterday that it's in my

       lymp nodes. They ( the Doc's ) seem to think that since Chemo or

       radiation don't seem to have any effect that my time frame is around

       3 to 5yrs. Would you have any info on that subject or where to go for

       up to date info. Once more thanks for your reply........Bob



			
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heatherk_28

				      
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	        Joined: Oct 2002

	      
	    				
		
			
May 3, 2011 - 4:29pm

			
Adamantanoma
			
I apologize for not posting a long time ago.  Here I am 18 years later and have not had a reoccurence.  My tumor was in my left tibia.  My surgery was performed at the Mayo Clinic in Rochester, MN by Dr Michael Rock.  He removed 3/4 of my tibia and replaced it with my fibula also from my left leg.  He used two screws to hold it in place and used bone graphs from my left hip to fuse the bone in place.  My fibula has now grown to the width the tibia once was.  I still get checked out every two years with x-rays of my leg and lungs.



			
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