Is there anyone doing the Yondelis trial? If so how is it going for you/results?
Also my husband just finished up with 18 rounds of radiation on his bones in the pelvic region. I understand that the radiation therapy has lowered his white count but now we can’t get it up so no chemo. Does anyone have any suggestions for us to try at home to help us get the white count
Thanks!
Yondelis is also called trabectedin. You can find a lot of discussions on yondelis/trabectedin here:
http://forum.synovialsarcomasurvivors.org/forum/topic/search?q=yondelis
Some people don't respond at all. 2 caregivers told me that after taking yondelis, their relative's synovial sarcoma had become more aggressive. But there are some success stories also. ImaFighter91 was on it for 5 and 1/2 years:
http://forum.synovialsarcomasurvivors.org/profile/imaFighter91
It's a big lottery :-(
They gave my son a shot of I think it was nulasta after chemo to raise his white blood count, can they do that after radiation? He is starting palliative radiation next week, 10 rounds, will that lower his white blood count again? He also took a Shaklee multivitamin with nutraferon which boosted his white blood cells when he was hospitalized one time. (Not sure that is spelled right)
My husband had the radiation to the bones which caused the bone marrow to be destroyed so that effects his white count. We have used the nulasta and Neupagen with the chemotherapy. They are sending Neupagen to our house this week so I can just give it to him at home. So we can try to get it up so we can start chemotherapy of some sort…
I too was going to suggest Neulasta. I rec'd that after each chemo session and my white counts were amazing. Check with your doctor if your husband isn't already getting that.
jsinder, how is your husband doing so far?
There is a new article about yondelis here:
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??
Oh Gosh, like you don't have enough to worry about :-(
Some family syndromes make it more susceptible to get cancer in general and sarcoma in particular. You can find a good article on the subject here:
http://sarcomahelp.org/articles/sarcoma-predisposition-syndromes.html
I do hope it's not your family's case though. I do hope your daughter's tumor will turn out benign and if not, will be easily removed with clear margins... You have a lot on your plate. Please keep strong!
jsinder said:
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??