RCC that has gone to the bone?

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

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.

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.

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