One patient with glioblastoma still alive nine years later
by Lindasdaughter on Wed Sep 11, 2013 02:40 PM
by Walking_Jim on Wed Sep 11, 2013 08:31 PM
I have been it a similar situation as your mother for almost 8 years. That is rcc with bone (spine , ribs and humerous) and lung mets. The only treatments that I know of for bone mets are radiation and drugs ( Zometa or Xgeva). Radiation (even steriotactic radiation) is generally not used near major nerves, due to concern for nerve damage. I have used both Zometa and Xgeva for years. My bone mets are smaller today than 8 years ago. The progressive has been slow. I do not know if the drugs can act fast enough for your mother. Xgeva is newer and less hard on the kidney.
I wish you luck in finding relief for your mother.
by PiperPilot on Thu Sep 12, 2013 02:21 AM
Jim. What you state is not quite accurate. Bone mets will respond to a combination of Xgeva or Zometa with an appropriate TKI such as Votrient or Sutent. The two agents must, however, be used together. Using one or the other alone is usually not effective.
I have been on Sutent + Xgeva for over one year now. I have bone mets in three locations (left femur; sacrum; T4/T5 vertebrae). In my case I have had excellent response to date. Only shrinkage, stability, or new bone growth observed. Plus no new mets.
I also have had no significant side effects while taking Sutent at maximum dosage (50mg/day).
by HealthyEater on Thu Sep 12, 2013 03:28 PM
Would your mom be willing to try an herbal remedy called Vitae Elixxir? It has kept me clear of colon cancer (diagnosed in 2008 and found to be genetic). Doctors wanted to remove my colon. No way. I went natural with diet (vegetable juices and smoothies, no sugar--cancer eats sugar to grow) and the Vitae Elixxir (VE). Take VE every day and cancer-free for 3 years. Lots of people have had good results still doing chemo.
by mrbuck on Fri Sep 13, 2013 03:34 AM
I know that Phoenix Cyberknife center is incredible at treating difficult and already radiated tumors. My husband had radiation treatment there for a tumor up against his heart that nothing else could be done. the stereotactic radiation destroyed the tumor. look up their website - phoenixcyberknife.com there is nothing to lose by contacting them and sending the information they ask for.
by Srbelle1 on Tue Sep 17, 2013 04:00 AM
On Sep 11, 2013 2:40 PM Lindasdaughter wrote: I posted this message on the smart patients website but thought i would also post it here. Any advice is welcome.
This is my first post on the site, but I read your posts daily and I am so thankful for this forum as it has provided me some positive insight on multiple occasions. I will update my health profile soon but in summary, my mom has stage IV ccRCC--she has mets to her lungs, spine, and one on her liver and is currently on 800mg of votrient. I reach out to you because today we learned that a met to her cervical spine at the C3 level is inoperable as it's the size of a golf ball, wraps around the cord and involves two main arteries. She has had some radiation to the tumor but it still seems to have grown. The news that this tumor was inoperable has been disheartening and is leaving my family feeling scared and helpless because her pain is uncontrollable. We are currently working with the pain clinic to try and get the pain more under control, but I still worry that the pain meds will just make her sleepy and unable to get her active self back. If this tumor was not an issue my mom would be feeling great. i want to do anything I can to help her. Has anyone been in a similar situation or have any words of advice? We need to get her strength back, but this pain is keeping her down. Any advice would be greatly appreciated.
You are all in my healing thoughts and prayers, Danielle
On Sep 11, 2013 2:40 PM Lindasdaughter wrote:
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