My husband is doing very good. We had our first appointment at MD Anderson last week. Which that place is HUGE compared to Cancer Treatment Center of America. The doctor at MD Anderson felt like the doctors at CTCA didn't give a large enough dose of Ifosfamide and Adriamycin to see if it was working or not. Since he had 18 rounds of radiation we can only give one at a time now. We are starting with the Ifosfamide. We asked about the Yondelis and she was fine with us starting with that but she said she thought we should start with the ones that are known to work. Which it made sense to us.
There was some changes in the scans.... new spots in the kidneys now that she says they are so small not worry about them. The spots in the lungs grew not by much and not any new ones. Her main concern is the bone. We have know that he has had it in the low spine, rib, and hip area but now there is a new spot in his neck. The lower part of his spine/hip has responded well to the radiation though so it is not any bigger just a lot of damage to the bone. Which in return has makes his WBS crap!
One thing she said that I felt very positive about was the amount of treatment he has had ( 3 LOW treatments of AIM, 18 rounds of radiation to bone areas, and 3 weeks of Voltrient) that she didn't really consider much of a treatment so that is why we haven't seen much of results. Plus she said she thought after knowing the treatment that he has received that she thought the scan was going to be way worse!!
After I thought about what she had said she is right we haven't taken the bull by its horns yet! Now my husband and I feel very positive that we have so many options still.
Our new problem a very BIG one is that our 6yr old daughter now has a mass/tumor or what ever they are calling it in her neck on her nerve sheath. We will set her up for a biopsy this week. They aren't saying much but what they do say I am taking it as they think it might be a form of sarcoma. I know I am probably not very positive about something like this coming back as nothing but all I can think is that she is going to be fighting the same thing her Daddy is fighting!!
I have read that it is genetic and hereditary??