Adamantanoma Help

BestofBritish Member Posts: 1
edited September 2022 in Bone Cancers #1
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.


  • sugary_snacks
    sugary_snacks Member Posts: 11 Member

    Did your friend opt for the chemo treatment? I read adamantinoma does not respond to chemo so I am not sure why they wanted to give her chemo if it hadn't conclusively spread to the lungs. Anyway, this is 12 years later so I'm hoping she is better and all is well.

  • cassidyjoyh
    cassidyjoyh Member Posts: 2 Member

    Hi all,

    i haven’t been in here in some time. But I do see there are new diagnoses of adamantanoma. I was first diagnosed at 13 in 1999. I’ve had 3 reoccurrences since, but as of this year I am now 10 years free! A milestone I never hit yet!

    That said, it’s true there is limited resources and research available. I was very lucky to be a patient of Dr Alvin Crawford’s at Cincinnati Children’s Hospital Medical Center (he has since retired, but the othropedics dept there still Holds his name.

    A few years ago, he and a fellow published the article below on my case. sharing here for everyone to have the info.

    let me know if any questions.

  • sugary_snacks
    sugary_snacks Member Posts: 11 Member

    Thank you for sharing your story and the link to your follow up study. Sorry to read about your difficult journey. It's good to see that frequent checkups have been helpful in finding recurrences and also other unrelated health problems. And it's great to know you have been cancer free for 10 years! My son was diagnosed last year in June with OFD-like Adamantinoma and had resection of the left tibia. This year in March, his doctor told us to go home and not worry about a thing, and he'd see us in a year. Only a few months after this, he was having pain and we find out after X-ray, MRI and biopsy that he has a recurrence. If my son didn't have any pain, we would have missed this recurrence. I think from now on, we definitely should ask for more frequent checkups.

    Did you have any chest pain by the way? We did a chest scan on my son last month and it was clear but since then he has complained of chest pain several times and I'm not sure if it's related or unrelated because he points to more the abdomen area. He has slight asthma like symptoms often so it could be that. I was relieved read somewhere that metastases have not been reported in OFD-like Adamantinoma, but I do worry about it and want to know what I should be looking out for.

    I see in the article that there were discussions with the family about amputation vs limb salvage surgery. I am guessing they recommend amputation to prevent multiple recurrences and metastases? Is there any other reason that the doctors might recommend amputation?