Sutent for RCC brain metasteses

Hello,

 I am new to this board and just looking to get some opinions and experiences on using Sutent for multiple brain tumors metastacized from RCC kidney cancer.  My mother was first diagnosed in the Spring of 2006 (at the age of 45) with Stage IV RCC and had her kidney removed.  All was well until February of 2008 when they had to remove a nodule of her lung where it had metastacized.  Again, all was well until early September this year when she had severe headaches and disorientation.  The MRI showed 8 masses all over her brain.  They did a 10-day whole brain radiation treatment.  She has been on steroids to reduce the swelling as well (dexa...?).  Today is day 28 of her first Sutent cycle.  She begun with 50 mg a day, but was having severe problems with her blood pressure shooting up for about 30 seconds and coming back down so they cut her down to 3 pills (37.5 mg). 

I am just wondering if anyone else has used Sutent for brain tumors.  I am also wondering about the side effects and if they tend to get better or worse in consecutive cycles.  She has lost most taste, has mouth sores, suffers from nausea that comes and goes, and has battled extreme fatigue for the entire month.  If it is like this next time, I'm not sure she'll want to continue.  All she can do is eat, sleep, and rest all day, though she tries to do more.  She had had a good week until a couple days ago, and now she's feeling out of it, confused, and flu-like.  They recently cut down her steroids so I'm wondering if that could be the cause, or if it could be the tumors growing again.  Not to mention, she's also on an anti-seizure medication because she had several seizures right before she started the Sutent.

 If anyone has experience with this, I'd appreciate the feedback!  Thank you so much.  I've enjoyed reading these posts.

 Julie

I just wanted to add.... what is gamma knife and cyber knife? I've been seeing it in messages.  After my mom's next MRI on 11/11, they may do target radiation on specific tumors.  Is this similar?

 

On 10/29/2008 Julie_TX wrote:

I just wanted to add.... what is gamma knife and cyber knife? I've been seeing it in messages.  After my mom's next MRI on 11/11, they may do target radiation on specific tumors.  Is this similar?

 

Gamma knife and cyber-knife is targeted radiation it is usually given for ten to fifteen high dose treatments. It can be used to treat indidviual sites that can not be treated with surgery, or that need to be reduced in size before surgery can be attempted.

 

On 10/29/2008 Julie_TX wrote:

Hello,

 I am new to this board and just looking to get some opinions and experiences on using Sutent for multiple brain tumors metastacized from RCC kidney cancer.  My mother was first diagnosed in the Spring of 2006 (at the age of 45) with Stage IV RCC and had her kidney removed.  All was well until February of 2008 when they had to remove a nodule of her lung where it had metastacized.  Again, all was well until early September this year when she had severe headaches and disorientation.  The MRI showed 8 masses all over her brain.  They did a 10-day whole brain radiation treatment.  She has been on steroids to reduce the swelling as well (dexa...?).  Today is day 28 of her first Sutent cycle.  She begun with 50 mg a day, but was having severe problems with her blood pressure shooting up for about 30 seconds and coming back down so they cut her down to 3 pills (37.5 mg). 

I am just wondering if anyone else has used Sutent for brain tumors.  I am also wondering about the side effects and if they tend to get better or worse in consecutive cycles.  She has lost most taste, has mouth sores, suffers from nausea that comes and goes, and has battled extreme fatigue for the entire month.  If it is like this next time, I'm not sure she'll want to continue.  All she can do is eat, sleep, and rest all day, though she tries to do more.  She had had a good week until a couple days ago, and now she's feeling out of it, confused, and flu-like.  They recently cut down her steroids so I'm wondering if that could be the cause, or if it could be the tumors growing again.  Not to mention, she's also on an anti-seizure medication because she had several seizures right before she started the Sutent.

 If anyone has experience with this, I'd appreciate the feedback!  Thank you so much.  I've enjoyed reading these posts.

 Julie

Julie,

 I don't have any answers to your questions but my husband has went through the removing of one kidney and a nodule of the lung. We are going to find out the results today from his last cat-scan. He has more spots on the same lung. We will see today if the chemo has made them shrink.  My prayers are with you.

 SC

Thank you for that information.  I believe this is the same thing they were discussing, but they just haven't used the same terminology.

SC,

 Thank you for the prayers, and my prayers go out to you and your husband as well.  I know what a difficult time this can be.  I wish you the best.

 

On 10/31/2008 Julie_TX wrote:

SC,

 Thank you for the prayers, and my prayers go out to you and your husband as well.  I know what a difficult time this can be.  I wish you the best.

Julie,

The tumors have not shrunk but they have not grown either. He has 6 of them in one lung. They are making his chemo stonger and we go back  in 3-4 weeks for another cat-scan. I hope you got some answers to your questions. 

 SC

Wish you the best also...

 

On 10/29/2008 Julie_TX wrote:

Hello,

 I am new to this board and just looking to get some opinions and experiences on using Sutent for multiple brain tumors metastacized from RCC kidney cancer.  My mother was first diagnosed in the Spring of 2006 (at the age of 45) with Stage IV RCC and had her kidney removed.  All was well until February of 2008 when they had to remove a nodule of her lung where it had metastacized.  Again, all was well until early September this year when she had severe headaches and disorientation.  The MRI showed 8 masses all over her brain.  They did a 10-day whole brain radiation treatment.  She has been on steroids to reduce the swelling as well (dexa...?).  Today is day 28 of her first Sutent cycle.  She begun with 50 mg a day, but was having severe problems with her blood pressure shooting up for about 30 seconds and coming back down so they cut her down to 3 pills (37.5 mg). 

I am just wondering if anyone else has used Sutent for brain tumors.  I am also wondering about the side effects and if they tend to get better or worse in consecutive cycles.  She has lost most taste, has mouth sores, suffers from nausea that comes and goes, and has battled extreme fatigue for the entire month.  If it is like this next time, I'm not sure she'll want to continue.  All she can do is eat, sleep, and rest all day, though she tries to do more.  She had had a good week until a couple days ago, and now she's feeling out of it, confused, and flu-like.  They recently cut down her steroids so I'm wondering if that could be the cause, or if it could be the tumors growing again.  Not to mention, she's also on an anti-seizure medication because she had several seizures right before she started the Sutent.

 If anyone has experience with this, I'd appreciate the feedback!  Thank you so much.  I've enjoyed reading these posts.

 Julie

 

Julie,

 My father has been battling renal cell carcinoma for 2 years.

It is an emotional roller coaster that no family should have to endure.

He had his kidney removed initially and had surgery to remove

part of his spine due to mets to the bones and lungs.  He did nexavar

for 10 months and then just stopped taking sutent after 8 months. He had to take a lower dose of sutent 28mg due to severe side effects.  It did shrink his tumors in his lungs, but we did see some new growth and we just found out this week he has 4 lesions in the brain.  OUR ONCOLOGIST TOLD US THAT SUTENT DOES NOT GO THROUGH TO THE BRAIN  (to the brain blood barrier-I think) He will now do 10 days of radiation and then start torisel once a week by IV.  I have learned that everyone responds differently to these meds, but please check with your oncologist about this.  Don't be afraid to question the doctor and do your own research!  We were told that we could not do the gamma knife because of the multiple spots but torisel is supposed to work on the brain too, so we will hope and pray for our miracle. 

 

On 11/2/2008 Luvmydad wrote:

 

On 10/29/2008 Julie_TX wrote:

Hello,

 I am new to this board and just looking to get some opinions and experiences on using Sutent for multiple brain tumors metastacized from RCC kidney cancer.  My mother was first diagnosed in the Spring of 2006 (at the age of 45) with Stage IV RCC and had her kidney removed.  All was well until February of 2008 when they had to remove a nodule of her lung where it had metastacized.  Again, all was well until early September this year when she had severe headaches and disorientation.  The MRI showed 8 masses all over her brain.  They did a 10-day whole brain radiation treatment.  She has been on steroids to reduce the swelling as well (dexa...?).  Today is day 28 of her first Sutent cycle.  She begun with 50 mg a day, but was having severe problems with her blood pressure shooting up for about 30 seconds and coming back down so they cut her down to 3 pills (37.5 mg). 

I am just wondering if anyone else has used Sutent for brain tumors.  I am also wondering about the side effects and if they tend to get better or worse in consecutive cycles.  She has lost most taste, has mouth sores, suffers from nausea that comes and goes, and has battled extreme fatigue for the entire month.  If it is like this next time, I'm not sure she'll want to continue.  All she can do is eat, sleep, and rest all day, though she tries to do more.  She had had a good week until a couple days ago, and now she's feeling out of it, confused, and flu-like.  They recently cut down her steroids so I'm wondering if that could be the cause, or if it could be the tumors growing again.  Not to mention, she's also on an anti-seizure medication because she had several seizures right before she started the Sutent.

 If anyone has experience with this, I'd appreciate the feedback!  Thank you so much.  I've enjoyed reading these posts.

 Julie

 

Julie,

 My father has been battling renal cell carcinoma for 2 years.

It is an emotional roller coaster that no family should have to endure.

He had his kidney removed initially and had surgery to remove

part of his spine due to mets to the bones and lungs.  He did nexavar

for 10 months and then just stopped taking sutent after 8 months. He had to take a lower dose of sutent 28mg due to severe side effects.  It did shrink his tumors in his lungs, but we did see some new growth and we just found out this week he has 4 lesions in the brain.  OUR ONCOLOGIST TOLD US THAT SUTENT DOES NOT GO THROUGH TO THE BRAIN  (to the brain blood barrier-I think) He will now do 10 days of radiation and then start torisel once a week by IV.  I have learned that everyone responds differently to these meds, but please check with your oncologist about this.  Don't be afraid to question the doctor and do your own research!  We were told that we could not do the gamma knife because of the multiple spots but torisel is supposed to work on the brain too, so we will hope and pray for our miracle. 

Apparently the tumors have broken down most of the barrier in her brain so they feel that the Sutent will get through.  As for gamma knife, I believe they will only do that if a few tumors stand out as being larger and causing more problems than the others.  We haven't tried Torisel.  I hope your dad's radiation goes well.  We're definitely doing our own research and blessed to have my brother who is in medical school because he has a lot of knowledge.  We also live near MD Anderson in Houston so she is getting good care there.  I wish the best for you and your dad.  Thank you for your response.

 

Julie,

 Thanks for your message.  As for the side effects of sutent, my dad's seemed to increase as time went on.  His mouth was very sore and it made it difficult for him to eat.  Food tasted like cardboard to him.  His feet even peeled from all of the blisters and it made it very difficult for him to walk.  We treasured those two weeks off of sutent and he finally had to  stop taking it early during that third week because the side effects were too much for him.  We would even plan our visits with the grandkids to make sure that he would be having his good weeks off of sutent. Again, everyone responds differently to the meds! It did really seem to tire him out alot too.

We started noticing him acting a little confused and having trouble with fine motor-buttoning things,opening things became difficult and our suspicions were correct-brain mets.  He will now do 15 treatments of whole brain radiation and then start torisel.  I have read lots of positive things about the gamma knife surgery-it is supposed to be better for fewer mets and have fewer side effects because of the more targeted radiation.  My dad has a bunch of tiny mets scattered throughout his brain.  He will also do the steroids to prevent brain swelling from mets.  Did your mom lose her hair with the whole brain radiation?  My had has kept his hair throughout all of his treatments and now we told that he will lose it and it will never grow back after wbr. 

 Your mom is so young, my prayers are with all of your family.  It is so hard to see someone you love... so much.... suffering and know that you cannot take their pain away.  Hang in there...