CancerCompass message board discussion started by weeles on 8/22/2007 http://www.cancercompass.com/message-board/message/all,15538,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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. weeles Wed, 22 Aug 2007 00:00:00 GMT 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. Reeaa Wed, 22 Aug 2007 00:00:00 GMT  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 Tanks Wed, 22 Aug 2007 00:00:00 GMT 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. Recnac Thu, 23 Aug 2007 00:00:00 GMT 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.   Xoxfrancine333 Thu, 23 Aug 2007 00:00:00 GMT 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 LuckLydia   Dolly Fri, 24 Aug 2007 00:00:00 GMT 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 Cindy611 Mon, 27 Aug 2007 00:00:00 GMT 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  Dolly Tue, 28 Aug 2007 00:00:00 GMT  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? harley boy Wed, 29 Aug 2007 00:00:00 GMT 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. Lexibear Mon, 10 Sep 2007 00:00:00 GMT Same thing that my husband went thru but unfortunately he passed on August 4th.  My husbands leg kept given out and the oncologist kept telling him it was probably from the Sutant. To wind up 3X in one week in a private ambulette to her office and then to the primary care dr (only got an emergency appt because when the social worker saw him in a  wheelchair and he was walking the week before) she was able to get him in. From there directly to the ER where neuro team ordered a stat MRI and then I had a Resident Neurogist fighting with me to consent to surgery and asking me how long did the oncologist give my husband. We were never told and he did so good on Nexavar for 1 year. Back in the end of December he could not keep anything down and I kept calling her and brought him to see her. She ordered Companzine and told us that should work. Same problem continued for another 3 days until I got the covering doctor and told him to admit him which Thank God he listened and did. By 1:00AM that morning he was given an ultrasound of pelvic area and two big masses grew back where the left kidney was removed. The growths were adhered to the intestines and that was causing the pressure not to be able to keep anything down. So much for her thoughts. Now we are dealing with him not walking and the pain from the neuropathy has kept him up for 6 days straight. Neuro team comes to me and tells me I must consent to surgery it could be cord compression. Thank God my sister is a nurse and made it to the hospital in about 15 minutes. Dont know how so made is safely. She did not want to speak to the residents only the chief and was told he was on his way in. He spoke with her and she explained to me that it is better to consent rather than to have him paralized. Twenty minutes later they came out and said they that had a signal and would not do the surgery. I question if they did not want to go ahead because of the oncologist screw up.  He was treated with high dose steriods which helped a bit. Transferred to rehab because the insurance company said they would not pay. He lasted two weeks at rehab and I took him home. The food was terrible. I can not understand how they can serve horrible food to cancer patients. I complained to the dietician and he said he would try to do his best to get the food my husband was able to eat. I wound up bring food for breakfast, lunch and dinner. He came home at steadily declined. He lived on pain medicine, neuroton, previcid tried taking the Sutant but was so sick. Back again to the oncologist and he said to try to eat and build him up and he would order scans again. Never happened. I asked if he could have more steroids or more radiation but was told he was maxed out because he did receive 10 high dose every day treatments to the upper lung for a tumor. He fought like hell and wanted to live. I kept him home with Hospice for one month but then he was transferred to a Hospice unit. I stayed there with him.I still to this day cannot forgive the oncologist for accusing me of over re-acting when I told her he should be admitted.  The mistake she made was to talk to my sister who is a nurse. My sister told her this conversation is ending because I don't agree with you and the nurse practioner who even wrote out the pain prescriptions wrong.Even the drugist was calling me because the nurse practioner wrote out the prescriptions wrong. This is a top notch hospital in NYC. So now I am doing what I have to do so this doctor will never treat another patient or family.the way my huband was treated. I am reporting her to every  board I can. I can now say I am willing to go after her for her unethical unprofessional medical treatment. My advise to any patient or family member if you are uneasy about something don't wait on it, approach the doctor, nurse whoever is involved and if you don't like the treatment you are getting look for another doctor..  I would have only hoped I could have gotten him to another doctor who maybe could have gave him some more time and comfort. God Bless All Cancer Patients and the Caretakers.Bernadette Wilmabc Mon, 10 Sep 2007 00:00:00 GMT I have RCC that has metastasized to my acetabulum (hip bone)  I was on Sutent, 50 mg/day for 28 says, off 14 days but side effects were too much (extreme high blood pressure, constipation, mouth sores, vleeding nose, hand-foot syndrome, nausea, extreme fatigue, you name it I had it)  Sutent dose was changed to 50 mg every other day, off 14 with same side effects.  Dose was changed to 25 mg/day off 14 for a couple of cycles, then I began vomiting blood and ended up in the hospital and was given 2 units of blood to replace what I had vomited.  I was taken off Sutent without completing the full course of cycles and am not on any chemo drugs of any type..  Now I have CTs done every 3 months to see what is happening.  So far no change in my condition.  Wish I could be more helpful to you. barb nurse Sun, 16 Sep 2007 00:00:00 GMT I have mRCC to the bone. When I was diagnosed in October '06, they missed that the cancer had spread to my hip and my breastbone. My rt kidney was removed Nov. 06. My left hip and 4 inches of my femur, also 2/3 of the thigh muscles were taken May 07. I received radiation to my thigh and breastbone in July/Aug. (the doctors had to wait for my leg to heal some, before they could start radiation) There are two kinds of radiation. One where the rays go straight through, which they used on my leg, and the other had to be directed by use of a funnel set close to my chest, because the rays go every which direction, and need to be contained, which was used on my chest, because the doctors were trying not to get radiation to my lung tissue. They used radiation because they cannot remove my breast bone...in an effort to stun the tumor, since radiation doesn't really work to kill this type of cancer. NO chemo works, because the chemo targets fast growing dividing cells, and this cancer is slow growing. There is a new drug called Avastin, an anti-angiogenisis drug, used primarily for colon cancer...find out if you have the marker VEG-F. If you do, then you may be a candidate for Avastin. Another drug I am receiving is called Aredia. It is specifically used for bone metastes. It does have a bad side effect. It can cause necrosis (death) of the jaw bone. Being that you probably only have one kidney, your doctor must be vigilent about your createnin(sp) levels. You shouldn't have both of these drugs administered on the same day. You will need to have a "port-a-cath" put into your chest. I tried having the drugs by IV, but your veins might not be able to handle the drug, as mine did not. Some of the medicine leaked out and I had a very painful forearm for a little over a week. I am single. I am doing all of this alone, with friends that help when they have time. The guy I was engaged to dumped me when he realized what he would have to put up with. It is very lonely to go through this with no family around to help. Because of my hip and leg surgery, I have to walk with a walker...hopefully will graduate to a cane. Any prayers you might be able to send my way would be greatly appreciated. flyby1950 Thu, 20 Sep 2007 00:00:00 GMT Dear flyby:  Sorry to hear about your fiance.  I know how difficult it is fighting this alone.  Three months after I learned the RCC has met'd my beloved husband of 54 years died and I left alone to face everything.  Lean on your friends and family and faith.  It's all we have!  Good luck!  Barb  barb nurse Mon, 24 Sep 2007 00:00:00 GMT