Rcc On Sutent With Mets To Brain

Hi, I just wanted to let you know I am new to this too. I would like to lend a ear if you need to talk about things. Some times thats all we got to make things seem better.

My father is 62 and has had RCC now for two years. He also is on sutent. He was on the 50mg for about three months and could not tolerate it. (hand and foot, blood pressure and such).

He currently is taking the 25mg and has been for about 5 months. He had a ct-scan and bone scan last week and it showed he has met. to the pubic bone and possible to the hip and such. I know this is not a good, however we all need to continue to stay positive for them. He has been doing great with the sutent up until now. So I am not sure if its because hes on the lower dose or not. I have been checking another message board and have had a lot of feed back on this subject. Seems it could be alot worse. I know some have talked about " gamma knife" for brain mets. Not sure how that works.

Stay strong and if you want to chat  will listen.

God bless.

My husband was diagnosed with renal cell in Feb 2006 and had his left kidney removed.  No treatment was done following the surgery because the surgeon assured us he got it all.  Well in May my husband had seizures (I thought he was having a stroke) and was rushed to the hospital.  After an MRI we found 2 tumors in the left lobe, unoperable because of the location.  He underwent gamma knife for the tumors in June of 2006.  Immediately he was put on large doses of dexamethsone (decadron).  Everytime we tried to reduce the dosage he had severe problems.  Every MRI showed extensive swelling and the tumors were the same size or slightly bigger.    The tumors have caused a gradual loss of his right side and he is now confined to an electric wheel chair with almost no use of his right side.  He has a lot of confusion and cannot do even simple tasks for himself.  In June of 2007 they found another tumor in the left lobe and did the gamma knife again.  Again he has had extensive swelling and has lost even more ground.   He is still on large doses of decadron and the steroid itself has caused several problems.  In addition he is on several other drugs that cause side effects, such as dilantin and tegratol.   He takes 29 pills a day. 

In Aug they found mets to both lungs and started him on Sutent the first of Sept.  He has just completed his first cycle of sutent (37.5 mg).  So far he has not had any side effects that are difficult to deal with.  The only ones he has had are the change in taste, chilling, fatigue, and high blood pressure.   The neurosurgeon is not sure that the gamma knife killed the last tumor and he may have to go thru gamma knife again.  I don't know what effect that will have on the Sutent. 

The tumors that they treated in June 2006 are still there.  He has had a lot of serious side effects from the gamma knife but I think it probably saved his life.  This is such a nasty disease and we just take it a day at a time.  A real blessing for my husband is that he has had absolutely no pain with any of this.  I personally think that the tumors have caused nerve damage and that is probably why he does not have pain.  

This site has really helped me, when I have time I go thru and read those that are similar to our situation.   It seems to me that almost everyone responds differently to treatments.  Gamma knife seems to have been successful to several. 

I wish you blessings and luck as you go thru this journey. 

Ginny

 

 

 

My dad's (age 79) situation is very similar.  August 1 we learned that he had RCC with mets to the pelvis, lumbar and brain.

He had 10 radiation treatments on the pelvic and lumbar tumors and Cyberknife on the brain tumor.

He just finished his second round of Sutent (50 mg for 21 days  then 7 days off).  Side effects have been minimal with the exception of mouth sores and a couple of low blood counts.

He will have a MRI on the brain in two weeks (the procedure was Sept 7.)  The Doctor hasn't said when he will scan the other areas to check for changes.

 

 

 

 

We will be starting SUTENT next week, my husband had RCC break out as a met to his left forearm before we knew he even had RCC.  We thought he had a bone cyst.  This was in July 2001.  They removed a pear sized tumor from his bone and did an allograft which took very well.  Within 3 weeks they removed his right kidney and a grapefruit sized clear cell RCC tumor.  We were in shock as he had been to a Urologist for kidney stones and they had only said his right kidney was slightly enlarged.  In 2003 they diagnosed him with 5 abnormalities to his pancreas and tried to biopsy through his stomach.  It was a nightmare and turned out to be undiagnostic.  They told us it was inoperable to pray.  We did and still do.  We did not want to take Interferon or Interlukin because they were so toxic.  We turned to alternative immune boosters - IP6 and Graviola.  Was doing great until just recently when he started getting headaches and a crick in his neck.  They found two inoperable tumors in his brain stem.  One doctor recommended whole brain radiation but we got a 2nd opinion and found what we consider to be miracle technology now exists, Cyberknife.  They were able to zap both tumors with sub-millimeter accurate radiation.  It took less than an hour and a half for each tumor and he walked out of the out patient procedure feeling better than when he went in.  It is harder to take an aspirin than it was to do this.  Praise God for 2nd opinions and new technology.  The only real side effect has been fatigue.  He also was put on Dexamethasone, 4 4mg per day by the first doctor.  The Cyberknife doctor immediately started stepping him down to a lower dosage and said that he usually would not recommend more than 2 4mg per day.  These steroids caused the severe hiccups which almost went into convulsions.  The doctor recommended over the counter Prisolec and that worked almost immediately.  He is now only taking 1/2 pill in the morning and 1/2 in the afternoon and is sleeping much better.   So now we are going to start SUTENT for the abnormalities they see in his pancreas in hopes to stop them from growing, there are now 8 and they are getting larger.  Praying for this to work.  Let me know if you want more info about CyberKnife.

Ginny,

I just read your email concerning GammaKnife and just wondered if you have heard about a newer technology that is very similar but better in our opinion?  It is called CyberKnife.  We live in the Dallas-FortWorth, TX area and considered both.  We are so glad that we went with the CyberKnife.  My husband is 56 and has been battling RCC since 2001.  The CyberKnife procedure was outpatient.  He had two brain tumors in his brain stem, one in the pons area of brain, worst place you can have them.  We are starting SUTENT next week in hopes that the abnormalities they see in his pancreas (8 of them) will stop growing.  We feel that God led us to the CyberKnife as quite a few miraculous things occured to move us in that direction.  You can check this out on the internet or let me know if you need more info.

Praying that miracles will be in your future - Susan

Hi Susan,

Thank you for your response and concern.  Really do appreciate it.  You have been battling this nasty disease much longer than we have.  It is encouraging for me to know that things can still turn around.  We do have hopes that it will. 

It is wonderful that your husband is responding well to cyberknife.  That is great!  Sounds like he is doing exceptionally well and I know you are very thankful.  I have heard of cyberknife and they have both here but our neurosurgeon opted for gammaknife.  When you do a comparison of cyberknife vs. gammaknife on the internet you will see why some prefer the gammaknife.  Probably many factors in there.   Isn't it wonderful that we have that kind of options?   Gammaknife is highly successful for most people but for some reason my husband's brain continues to have extensive swelling.  Everytime we try to reduce the decadron he loses strength and function to the point that it is dangerous.   The swelling has been the problem from day one.  The MRI shows that the 1st 2 tumors are probably dead although they are still there and have not shrunk.   The 3rd tumor they have questions about and will do another MRI in about a month and decide then whether to do the gammaknife again.   Our neurosurgeon has told us that renal cell is especially resistant and hard to treat.    Now we find that he has mets to both lungs so that is why he started sutent.  They will do a scan after he has had his 3rd cycle of sutent. 

I certainly hope and pray that things continue to improve for you and your husband. 

Ginny 

 

Hi Ginny,

Yes we have heard that RCC is especially tough to kill and that is why we were so frightened by whole brain radiaition.  We looked at GammaKnife as well and had differences of opinion on which is best for brain mets.  The Gamma has been around longer and is only used in intercranial.  But the CyberKnife is newer and is very flexible so it can be used throughout the body.  We thank God for all of the advances that are being made to treat RCC.  In 2001, our choices were very few and very toxic.  Just wanted you to be aware that CyberKnife can be used in the lungs just in case you need to go that route.

God Bless you and your entire family, God give you peace and wisdom for the future.

In God's Hands - Susan

My wife (39 years old) was diagnosed with RCC in May '07. She went to the hospital with what we thought was a migraine. A CT scan showed 2 large tumors in brain. Further tests found a large mass on her right kidney and numerous mets in her lungs. The dr.'s also found 2 smaller masses in her brain with an MRI scan. She had a needle biospy and it came back as Clear Cell RCC. This was quite a shock since my wife up until this was in perfect health. She hasn't even ever had so much as a cavity!

The Dr.'s said that whole brain radiation and Sutent were her only options. She had an appointment with Memorial Sloan-Kettering but unable to make it do to the headache coming back. She started radiation at once. At first it seemed to be working but it turns out that it was the higher doses of decadron that were giving her releif and not the radiation. This was found out after she finally did make it to MSKCC (July '07). She was in great distress when we went to see the Dr. there and they admitted her right away. MSKCC ran their own tests and found that the cancer had advanced. Her brain tumors had grown in size and she had new mets to her hip bone and liver. We were devastated by this new news.

She was offered to be in a Sutent trial through MSKCC and we jumped at the chance. She completed her first round 8/1/07 and we had our fingers crossed. Her first MRI was 6 weeks later on 9/6/07 and we got FANTASTIC news! Her brain tumors had shrunk by 50% after just 1 cycle. Since then she has also been able to stop taking the decadron with no ill effects. 

She is now on the break after her second cycle and she has an MRI coming up on Friday and we are hoping and praying for more good newsl. This second cycle was much rougher then the first. Only her excellent results kept us going. At the midway point the dr.'s almost took her off but because of how well she responded to the first round they asked her if she could "gut it out" and she did.

My thoughts and prayers go out to everyone affected by this horrible disease. Stay Strong.

Mike

Hello, my husband was dx in 2005 with RCC. He has had 3 brain surgerys, kidney removal, and a spot taken off his lung. It seems that about every 6 months you can count on it popping up somewhere. He now has a very small spot again on his lung. We went to the oncologist yesterday and they started him on Sutent. I must admit I cried because I was scared to death of the drugs and what they can do to your system. This messeage board has helped eased some of my fears. There seems to be great stories about how Sutent has helped alot of patients. I just pray that all on this web site have alot of miracles happen!!!!

 

Kim