RickGeorge
04-06-2004, 10:18 AM
Hi All
This is my first post so bear with me.
My 4 month old daughter, Isabelle, was diagnosed with a rhabdomyosarcoma three weeks ago and started on the IVA chemotherapy regime (Ifosfamide, Vincristine, can't remember the third!)
The tumour started in the corner of her eye when she was two months old and had grown very aggressively (almost to the size of a golf ball) by the time she three and a half months old. It covered her eye so much that she could not open it.
She has had one dose of all three drugs at Great Ormond Street Hospital in London and two doses of Vincristine. She is back at the hospital this thursday for her second dose of all three IVA drugs.
Up until last Sunday (two weeks after commencing her chemotherapy) we could see a positive reduction in the size of her tumour, she could open her eye slightly which gave my wife and I a real sense of optimism.
However, since Sunday, the tumour seems to be possibly growing again (albeit not as quickly as it did before she was diagnosed)
My question is, "Is this normal?" Should the tumour decrease for two weeks and then start to increase again? Is this a bad sign that the chemotherapy regime is not working or should we expect it to reduce again once she has had her second three day dose in hospital.
If there is anyone with any thoughts, please reply
Many thanks
Rick George
This is my first post so bear with me.
My 4 month old daughter, Isabelle, was diagnosed with a rhabdomyosarcoma three weeks ago and started on the IVA chemotherapy regime (Ifosfamide, Vincristine, can't remember the third!)
The tumour started in the corner of her eye when she was two months old and had grown very aggressively (almost to the size of a golf ball) by the time she three and a half months old. It covered her eye so much that she could not open it.
She has had one dose of all three drugs at Great Ormond Street Hospital in London and two doses of Vincristine. She is back at the hospital this thursday for her second dose of all three IVA drugs.
Up until last Sunday (two weeks after commencing her chemotherapy) we could see a positive reduction in the size of her tumour, she could open her eye slightly which gave my wife and I a real sense of optimism.
However, since Sunday, the tumour seems to be possibly growing again (albeit not as quickly as it did before she was diagnosed)
My question is, "Is this normal?" Should the tumour decrease for two weeks and then start to increase again? Is this a bad sign that the chemotherapy regime is not working or should we expect it to reduce again once she has had her second three day dose in hospital.
If there is anyone with any thoughts, please reply
Many thanks
Rick George
Sponsor
renee_ky
04-06-2004, 01:10 PM
Rick- I am so sorry for you and you wife, and for little Isabelle. What a terrible thing for all of you to be going through. I do not know anything about rhabdomyosarcoma, but I am trying to find information regardign it. Do you know how it was classified?
Embryonal rhabdomyosarcoma. Most common type, usually found in children under 15 and in the head and neck region and genitourinary tract.
Botryoid type. A variant of the embryonal type; the tumor arises as a grape-like lesion in mucosal-lined hollow organs such as the vagina and urinary bladder.
Alveolar type. A more aggressive tumor which usually involves the muscles of the extremities or trunk.
Pleomorphic type. Usually seen in adults and arises in muscles of the extremities.
It does sound like orbital is the easiest to treat. From what I can find, it is shrunk with chemo and then removed surgically.
Good luck! I will the best for Isabelle.
Renee
Embryonal rhabdomyosarcoma. Most common type, usually found in children under 15 and in the head and neck region and genitourinary tract.
Botryoid type. A variant of the embryonal type; the tumor arises as a grape-like lesion in mucosal-lined hollow organs such as the vagina and urinary bladder.
Alveolar type. A more aggressive tumor which usually involves the muscles of the extremities or trunk.
Pleomorphic type. Usually seen in adults and arises in muscles of the extremities.
It does sound like orbital is the easiest to treat. From what I can find, it is shrunk with chemo and then removed surgically.
Good luck! I will the best for Isabelle.
Renee
dyana
04-06-2004, 05:08 PM
i am also sorry to hear about your misfortune. my 24 yr. old was diagnosed with liposarcoma 9-03. they at first thought it was rhabdo but after the tumor was removed and biopsied it was not. she then had radiation. find out and learn as much as you can. it is very important, find dr.s you trust. i feel for you greatly. your baby is so young. please let us know how things turn out. please
dyana & mandy
dyana & mandy