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I was just at NIH last week and was asked to be on a protocol for those who have renal cell tumors. Is there anyone on this protocol thats has been on it awhile and has had side effects and what they were and how severe? I am considering it. I am very nervous about it and before starting the whole testing process I need to know how others reacted and if the recommend it or not.
Thankyou
I tried to get into the protocol for Zactima or ZD6474 at NIH but I was declined. At the time (that is around 6 months or so ago) there were only about 10 or 11 people on the protocol. But I was also told it was early days. Side effects had made one or two leave the protocol. You should ask all the questions to the research nurse and doctor - every detail. Side effects as I remember can be-
high blood pressure and it's risks, nausea, and you have to avoid the sun as you can get burnt pretty badly. I'm sure there are other potentials as well.
The fact that they asked you is probably because you have many tumours on one or both kidneys or you have only one kidney with previous surgery done on it. I'd also discuss surgery with the surgeon and the risks and benefits from it. It all depends on your individual situation really. The protocol means you will have to be at NIH every 28 days for scans and the time period is indefinite for the protocol. I was ready to do it but since surgery was an option for me and as I live outside the US they did not accept me into the protocol - although initially they had asked me to join as well. They only make their final evaluation after all their tests are performed on you and you sit through a good conversation with the doctor. So there is no harm in doing the preliminary to see if you physically qualify because you can always opt out.
Finally, I did speak with 2 people on the protocol - they both seemed to cope with the side effects (they were both in their 50's). For one the tumour growth had stopped (a lady) for the other it was the first scan after starting the protocol. These are all the facts I know. I hope it helps.
hi, i have been on zd6474 for 14 months now...the second longest so far in the study. i have had some side effects but i still feel it's better than surgery. the side effects are really different by person...11 of the original people were dropped due to side effects. you really have to be commited to following the rules and learn what you can eat to avoid many of the side effects...a very bland diet with little fat (it's a great weight loss program). the bad side effects are the ones that effect blood pressure and the heart and usually show in the first month . you become allergic to the sun and actually get rashes if you get sunshine.
i'm at the nih next week for the 14th month exam which consists of ekg's and blood work and then the doctors do a quick physical. every 3 months you get an eye exam (we get speckles in our eyes that can cause some glare problems, but it's not bad), ct scans and mri's, and dermatology, and then any other ologist they (or you) feel you need to be seen by. you have to go to the nih every month for 2 days, unless you live close to them, so i fly in on wed and go home on thurs. you have to take your blood pressure daily and keep a diary that you fax weekly, and in the first month or 2 you have to get ekg's and blood work at home every week.
my results have been pretty good....my left kidney tumor has gone from 2.5 to 1.5, my right tumors haven't done as well but i have had shrinkage and other changes in them. only 1 tumor is still within surgerical range. i still work 50 hours a week in retail and i'm more tired than i use to be but i feel the drug has a pretty good choice for me.
if you would like to talk, we can arrange that through joyce at the vhlfa...she has been phone number on file. cathy
Cathy
That would be great. Right now I have a endoscopy,colonoscopy and a endoscopy with a sonogram to check the pancreas cysts and tumors first then I will call to begin the tests for the protocol. I really appreciate you writing to me and explaining the side effects. If this is going to work i want to try.
Debbie
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