Renal Cell Carcinoma (Kidney Cancer) Support Group

Hi Sarah,

As you know Ray began Sutent a week ago. When he asked our oncologist how long he would have to be on it, he replied, "Let's hope you get to take it 10 years!" Hmmmmm! Sounded to us like that meant he'll be on it or something else as long as he lives.
From what I've read and been told by others, the two weeks they're off Sutent (rest period in between 4 weeks of daily pills), that they feel really well. Maybe you should plan the cruise around that schedule?
I was thrilled to read that your kidney function is okay. Praise the Lord!
Hang in there, girlfriend.

Ingrid

Hi Sarah

Many Many Many people have been on Sutent for years. Others not so long. The simple (and confounding) answer to "how long" is:

"As long as it works"

The usual "course" or cycle is 28 days on Sutent, 14 days off, resting. A few people have not tolerated Sutent well, having difficult-to-control side effects. For those people, shorter cycles sometimes are prescribed, such as 14 days on, 7 off., etc.

Ingred gave you wonderful advice: Assuming Tom remains on a 28/14 cycle, plan your cruise for late in his "off" time, perhaps even overlapping the "restart" time by a day or two.

Dave

Thanks guys! I had trouble getting on....lost my password. Anyway, Tom and daughter got back Saturday. We had the family over/grandson and his four babies, and had a good time.

Tom sees the new onc tomorrow. CCF wanted "him" to do the Rx's etc. The bad news is that CCF thinks Tom has two cells....Clear Cell RCC and Papillary cell RCC. I need to look again at pap, but remember it's not as common, nor easy to treat. This sounds like "sequential" treatment with different drugs may be in our future.

I assume we begin the Sutent tomorrow. OH!!! I need to tell you.....Tom contacted Medicare about coverage for Sutent. They don't!!!

He was laying awake in Cleveland, because he was having pain, even after three Tylenol-3's. He remembered that "I" was in my first 60days of the new GS/government job, and that I could add a family member on within the first 60days!

He called me at 6:30 a.m. and asked me to check whether "my" plan covered Sutent, and if I could still get him on. I did...AND if I hadn't called Thursday morning....I would have been beyond the 60day period because all the govnt offices were closed on Friday!!! I got him on MY plan, and his co-pay for Sutent will be $60 !!!!

Were WE lucky! Thank God, he's so smart! It never occurred to me to put him on my plan!

So things HAVE HAD some good results, within the stress and disaster of having RCC.

Sarah

I'm so glad things are going well. (if one can say that with RCC).

Anyway, Tom is getting treatment and you have insurance to cover it.

Thanks for the update

Dave

It's strange to me, that one can take this drug for "years". The cost for 50mg is $23,785.42 for 28 days. He's taken his second pill this afternoon.

Sarah