Rcc That Has Gone To The Bone?

Hi, I am new here.  Does anyone have anything on RCC that has gone to the bone?

My hubby had a kidney removed in 2004 with no other treatment.  It has come back and is in the breastbone and the kidney bed where his kidney was.  We have been given two options.  IL2 or Sutent.  Any suggestions. I am looking for all of the help and information that I can get.

I have a family member with cancer mets to the spine only.  She is on Sutent.  I know several people on these boards who took sutent for bone mets.

I also know many people with Bone mets who tried radiation and sutent.  Have you explored that option?  There is a study on stereotactic radiation + sutent at Mt. Sinai in NY.  There is a radiation + sutent study at Thomas Jefferson U. in Philadelphia.  Duke and I believe U. of Pittsburgh did a study of Nexavar plus radiation.  I am not sure where you live, but you might want to consider radiation as an option.

 I don't know if either of these types of treatments would be appropriate for your husband, but it might not hurt to ask your doctor.

 

On 8/22/2007 weeles wrote:

Hi, I am new here.  Does anyone have anything on RCC that has gone to the bone?

My hubby had a kidney removed in 2004 with no other treatment.  It has come back and is in the breastbone and the kidney bed where his kidney was.  We have been given two options.  IL2 or Sutent.  Any suggestions. I am looking for all of the help and information that I can get.

Hi I had a kidney removed in June 2006 with no other treatment.  6 months later I had my ct scan and it showed that it was in my ribs.  I have been on sutent for 3 full months my last ct scan showed there was no change.  I will be on sutent for another 3 month and we will see if it has changed.   I have hear a lot of good success stories after being on sutent.  I wish you all the luck.  Edie

I was DX 6 months ago with bi-lateral kidney tumors and mets to right pelvic bone, right 5th rib, right lung and spine. By that time the rib had been destroyed by the cancer. Doctors were most concerned about spinal tumor, so I had 13 radiation sessions. They told me they were really "hammering" on the pelvic bone with 25%-30% higher doses than usual. The intention was to kill the cancer there. I can tell you that in July I finally began to feel almost normal in my hip. I was able to take long walks again! But only when the Sutent doesn't rob me of all energy.

They had to be more conservative at the spine. Then I did 2 rounds of 50MG Sutent. Was scanned in late June. Some regression on pelvic bone, lumph nodes, lung mass and both kidney tumors. The spine area didn't change, so I'm hoping the 2 rounds since then have helped. Being scanned on 9/17 after I finish this cycle.

My father had RCC mets that spread to the bone as well.  He was on Zometa, injected monthly to strengthen the bones and keep them from breaking however, the growths were eating away at the hip bone and he had to have a full hip replacement.  

We started my dad on Sutent, which is a pill, and it did not work for my dad.  There was still growth in his tumors.   Now we are on a trial that includes dosages of IL-2.  It is a much more intense treatment then Sutent and the % of it working is less however, it has been the only treatment known to actually cure you of RCC totally.  

There is no right or wrong answer.  And if you try one treatment you can always switch to another one down the line.  

From this board, I see that Sutent seems to help many people.  I wonder how they found the RCC mets to the bone?  My husband had one kidney removed with RCC last year - now his bone scan showed "marrow signal changes" in spine and hip.  Our regular doctor is sending us to a ortho guy, but she said she did not think the RCC had spread.  Is there a definitive test?  I will include your husband in my prayers tonight.  Good Luck

Lydia

 

 

In my opinion you should search for a GU (genito-urinary)oncologist in an area near you.  General oncologists seem to not know enough about RCC or how to treat it.  Be sure to have your hubby get a brain scan as well.  We thought everything was going well, blood work looked ok?. but turns out that Tom has mets. to the brain, 3 lesions, 1 is 1cm and 2 are 1.5cm the 2 are close enough together to be treated as one thank God, but if it wasn't for the GU oncologist we wouldn't have known it at all, his old onc. never even mentioned another brain scan.  He had one in Feb of this year and was clear, 6 months later 3 lesions???????  This disease is crazy and irratic so I would suggest a specialist ASAP.  We are "fortunate" to live within 15miles of a top cancer research hospital and found a great Dr. and one that Tom felt comfortable with (that's not always an easy task).  Well I hope my babbling and suggestions help.  Good luck & God bless!!

Cindy

Thanks, Cindy, for the good advice.  We are making appointment with a specialist who is supposed to be excellent about 2 hours from our home.  I will keep you and Tom in my prayers.

Lydia

 

 

On 8/22/2007 weeles wrote:

Hi, I am new here.  Does anyone have anything on RCC that has gone to the bone?

My hubby had a kidney removed in 2004 with no other treatment.  It has come back and is in the breastbone and the kidney bed where his kidney was.  We have been given two options.  IL2 or Sutent.  Any suggestions. I am looking for all of the help and information that I can get.

Hi we are new here too--my husband had his right kidney ou in 2003 thought they got it all no chemo or radiation--did well for three years then last year he had an enlarged lymph node behind the left kidney--biosopied it was renal cell carcinoma--also had a few lesions on his lung now--that was last august--he took sutent for 5 months--handled it prettty well , took stomach pills to calm his stomach--was weak and tired --some diahrea- but it dissolve a 17mm node on his lung and dissolve a 3.1cm  enlarged lymph node--but it weakened his heart so that it was only pumping 38% so he had to go off the sutent for 3 months--his heart has gone back up to 45% but they wouldn't put him back on sutent and now he has taken the other new chemo drug for renal cell called Nexavar made by bayer he has some differnt side effects with this--we wanted to try the sutent again because it worked so well but they didn't think his heart could handle it.. what is the other drug you mentioned in your email--il2 what is that?

My ex father in law (we are still very close) had a kidney removed in 2004 and we were told by the urologist that "I sliced that thing every which way and it was nothing but a big old cyst", end of story. Or so we thought, 9-06 he started to have pain in his upper arm, then his back began to hurt, after a few trips to er and being sent home, he was in so much pain, and this is a man that does not complain, we insisted he be admitted. We found out when the kidney was removed before it was RCC, incapsulated, but still RCC and we were never told. So, you guessed it, know it is in his right shoulder, spine, pelvis, hips and femurs. He went through 14 radiation treatments to start, this caused severe burns in his throat so he couldn't eat or drink. I am a nurse, so i was constantly over there trying to come up with something new to help and he was in and out of the hospital alot, we just that cleared up and then he an episode where he couldn't catch his breath so back to the hospital by ambulance. His lungs were scarred by the radiation, so then he was on oxygen. That lasted about about a month and he was able to get off it. He was prescribed Nexavar but couldn't start it until his platelet, rbc, wbc, etc came up which took forever. He has been on it about 2 1/2 months and doing pretty good. He has lost about 45 pounds since march, is in a wheelchair, but spirits good. Takes very little oxycontin for pain, is right now at the end of 12 more radiation treatments to his pelvic area to try to relieve the pain in his hips and doing okay so fay, has had 2 kyphoplastys on his spine which helped immensly with his pain. This is like a vicious circle, even being a nurse it sometimes makes my head swim. They told him if they got him stable on Nexavar he may have 1 year. He just his his first bone scan and cts and all looks really good, but to think all this probably could have been prevented if the original Dr had just spoke up is really sad.