New To Board And Rcc

On Nov. 2, 2007 my husband was diagnosed w/RCC in right kidney w/mestatis to right lung. Kidney removed Dec.11, scan 4 weeks later showed progression of lung with 1 significant nodule and about 10 small ones in right and now left lung, and a few lesions in his brain.  He just completed radiation to his brain on Wed. Feb.27, and will start either Toricel or Sutent on March 12.  We meet with doc. on Fri. the 7th to tell him which drug we want, we have all of the info, but I just wanted to know if anyone had any thoughts about the drugs.  He is 51 and in great health otherwise, I am 37 and we have a 12 year old daughter and a 5 year old son.  This has obviously been a nightmare for my family and I feel like I'm going nutso trying to take care of everything and research to try and save my husband so any info is greatly appreciated.  God bless all of you in this battle, both patients and caregivers.

xoxo,

Mamma V

Hello Mamma V

 First off I want to say sorry to meet u this way. Although it is nice to have a place to come when you need it.

My father is the one with this disease. He has been on Sutent now for about 12 months. He started with the 50mg and then had a few side effects. Hand Foot and some higher blood pressure readings. He had to stop that dose and then went to 12mg. Well he was showing good results with the 50 and then with the 12 he had some progression. He is now on 37.5mg and seems to be doing well. The disease is stable at this point.

I hope you get some other input from others, However these medications affect everyone different.Do you know the type of RCC ? Clear Cell >>or one of the others? Also has he had the kidney removed? How did he know about the mets to the brain? How is he doing now? I know this is alot to handle and as long as you continue with being informed things will seem a little less stressful. I will answer any questions  I can. You can always reply with a private message if need be.

A/F  lilsis 

On 3/2/2008 lilsislovesdad wrote:

Hello Mamma V

 First off I want to say sorry to meet u this way. Although it is nice to have a place to come when you need it.

My father is the one with this disease. He has been on Sutent now for about 12 months. He started with the 50mg and then had a few side effects. Hand Foot and some higher blood pressure readings. He had to stop that dose and then went to 12mg. Well he was showing good results with the 50 and then with the 12 he had some progression. He is now on 37.5mg and seems to be doing well. The disease is stable at this point.

I hope you get some other input from others, However these medications affect everyone different.Do you know the type of RCC ? Clear Cell >>or one of the others? Also has he had the kidney removed? How did he know about the mets to the brain? How is he doing now? I know this is alot to handle and as long as you continue with being informed things will seem a little less stressful. I will answer any questions  I can. You can always reply with a private message if need be.

A/F  lilsis 

Sorry I see now he did have his kidney removed. Wow alot going on in a short amount of time.

Please go to clinicaltrials.gov and read this article

http://www.biospace.com/news_story.aspx?NewsEntityId=87548

there are lots of things to choose from and lots of hope for the future. My best to you-tagml

My mother was just diagnosed in late January, Stage IV with mets to both lungs and pelvic bone.  Her doctor consulted with MD Anderson and they recommended Torisel.  I also brought her to a specialist here in Dallas and he also recommended Torisel.  It seems to be the best against metastatic RCC.  However, it's still relatively new and there isn't a lot of information about it.  I will say Torisel side effects seem to to much less than that of Sutent.  My Mom has done pretty well, mostly fatigue and anemia.  Hopefully your oncologist will have a recommendation for your husband.

Good Luck

I am so sorry for what you and your family is going through. My husband was dx in Dec. 2005. We have 3 children 18, 10, and 9. It is very tough on them. He has had 3 brain surgeries, a lung surgery and a kidney removal. He is now taking Sutent for a very small spot in his lung. He does not feel well at all while on Sutent. Mostly, he has upset stomach, indigestion and fatigue. However, his spot has not grown as of last scan.

I will keep your family in my prayers.

Best Wishes,

Kim

thank you so much for your prayers and info.  We have decided on torisel for now, and he starts treatments Wednesday.  I just hope he does well.  Good Luck to you, my thoughts and prayers are with you.

Mamma V