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Adamantanoma Help

BestofBritish
Posts: 1
Joined: Sep 2010

I was hoping you could point me in the correct direction for information pertaining to treatment. A very close friend of mine was recently diagnosed with Adamantinoma in the top of her tibia. Five weeks ago the tibia along with her knee were removed. On the full biopsy after the tumor was removed the oncologists found some of the cells had differentiated, become a more aggressive form, apparently only the second case the oncologist or rather the three oncologists had ever heard of especially in a woman. Further CT scans indicated no new growth anywhere in the body however, 3 small “bright spots” on one lobe of her lungs last week. They are so small that a biopsy is impractical and because she was a smoker in the past this would typically be an indication of damage possibly from the smoking.

However, and this is where I am looking for direction, her doctors are prescribing a full regimen of chemotherapy starting as soon as possible. Apparently the oncologist feel to not take chemo would carry to much risk. Chemotherapy is as follows: 6 cycles, 1st week 2 drugs cisplatin and doxorubicin (4days) then day 21 3rd drug methotrexate 5days day 28 methotrexate 5days. Day 35 start again.

My concern is this treatment might do more harm than good and the probability of secondary cancer is rather low. The initial cancer itself is a very rare form and it has been difficult to find information on treatment after the initial operation. My friend in located outside of London and the doctors there have never treated anyone with this cancer. Am I being too concerned about her taking the chemo at this point and couldn’t she wait and take another CT scan in a week or so to see if anything has enlarged and grown? They have not found one cancer cell in her since the operation. Is there a specialist in this disease in the USA that could help with a second opinion? My friend is 40 years old and other than this she has been in perfect health her entire life.