Rcc In Bone Metastasis And Nexavar

My husband had rcc in his kidney which was removed and underwent chemo, there after had a recurrence in his adrenal and then again now in 2008 has shown metastasis in spine and small spots in the lung. He is only 40 . He has subsequently had radiation to the spine and will take nexavar.

 If any one knows or has similar symptoms please email me. we are hopeful that nexavar will work. Does the radiation kill the cancer in the bone? or only stops from spreadiing? I have read that Nexavar has a good outcome in most patients.

 Please email me if someone is presently on Nexavar and please let me know progress. I would like to keep in touch for support and strength.

I have read about mangostein juice and vitamin c alternative treatment- I have not heard of those treatments in the areas we live. what if I give him the fruit , and also continue with lots of fruits rich in Vit C?

 Anything I should know, side effects, how to manage them when taking nexavar will be helpful.

Thanks, and I think this site is a wonderful way to support each other.

My husband is on the end of his second round of Sutent, and recently completed 14 radiation treatments. Dx in Nov 07 , multiple lesions to both kidneys, lytic lesions to spine, hip, pelvis, and femur. Let me address what Info I have been able to gather on the bones. After receiving 3 treatments of Aridia (monthly), and 1 round of Sutent, my husband had a skeletal survey to measure any progression, or regression from that point on ,as a result of all his treatments( on the bones.) When x rays and ct were done to set him up for radiation the only lytic lesions that showed in the skeletal survey was one on the spine, all others which were in the skeletal survey did not show up including a very large hole in his pelvic bone. Of course all the radiologist would say is"appears to be gone" well holes in the bones are very visible. This I am sure is from the monthly Aridia, as it was prior to radiation. It is my understanding that radiation will kill only the spot that is radiated,but that the cancer can return anywhere else in the bone, that it does not cure the cancer in the bone.  As far as the oral chemo,I have heard mixed info on that regarding the bone,maybe it is too new to know for sure yet.I have asked about after effects of radiation(pain, diarrhea, ect) and how long it last, but got no response. What was your husbands experience with it?

I was diagnosed with stage 4 RCC in October of 2006. I was on Nexavar for 18 months and the cancer was kept in check. No growth no spread. I had to stop taking the drug because I developed severe sores on feet and hands, and I also had diahrea which got worse with time. It does work and not everyone gets these side effects. I tolerated it for 18 months. I switched to Torisel, which I had to stop because I got pnemonia and very high glucose levels. I am now on a low dose of Sutant and I'm doing good. I will have a cat scan in 2 weeks.

Good luck to your husband and his nexavar treatment.

Richard

 

On 1/26/2008 Darryl wrote:

My husband had rcc in his kidney which was removed and underwent chemo, there after had a recurrence in his adrenal and then again now in 2008 has shown metastasis in spine and small spots in the lung. He is only 40 . He has subsequently had radiation to the spine and will take nexavar.

 If any one knows or has similar symptoms please email me. we are hopeful that nexavar will work. Does the radiation kill the cancer in the bone? or only stops from spreadiing? I have read that Nexavar has a good outcome in most patients.

 Please email me if someone is presently on Nexavar and please let me know progress. I would like to keep in touch for support and strength.

I have read about mangostein juice and vitamin c alternative treatment- I have not heard of those treatments in the areas we live. what if I give him the fruit , and also continue with lots of fruits rich in Vit C?

 Anything I should know, side effects, how to manage them when taking nexavar will be helpful.

Thanks, and I think this site is a wonderful way to support each other.

I only have a few minutes, so I will go right to the point.

I have RCC mets to the bone.  I am on Avastin for the cancer and Aredia for my bones.  No real side effects. You might want to find out if your husband's cancer has the markers VEG-F (mine is 3+) this is a marker for colon cancer, and Avastin is the drug to help with that.

Sorry, I have to run.  Best wishes.

hi richard

I was going thru some old communication. How did your cat scan go. Hope you are doing well.

My hubby just developed a rash for the nexavar and he is using a lot of moisturisers and I guess it is helping a lot. He is additionally taking, oxy drops, flax oil, and system cooloing supplements like sago, barly water and tender coconut water, water melon juice which is traditinal treatment to cool downthe system, from where i come from.

 I think this is helping as the drug is also very strong. He is also taking the milk supplement "ensure" and brands essessence to keep his strength up.

rgds

On 2/1/2008 Richard2 wrote:

I was diagnosed with stage 4 RCC in October of 2006. I was on Nexavar for 18 months and the cancer was kept in check. No growth no spread. I had to stop taking the drug because I developed severe sores on feet and hands, and I also had diahrea which got worse with time. It does work and not everyone gets these side effects. I tolerated it for 18 months. I switched to Torisel, which I had to stop because I got pnemonia and very high glucose levels. I am now on a low dose of Sutant and I'm doing good. I will have a cat scan in 2 weeks.

Good luck to your husband and his nexavar treatment.

Richard

 

 

On 2/29/2008 Darryl wrote:

hi richard

I was going thru some old communication. How did your cat scan go. Hope you are doing well.

My hubby just developed a rash for the nexavar and he is using a lot of moisturisers and I guess it is helping a lot. He is additionally taking, oxy drops, flax oil, and system cooloing supplements like sago, barly water and tender coconut water, water melon juice which is traditinal treatment to cool downthe system, from where i come from.

 I think this is helping as the drug is also very strong. He is also taking the milk supplement "ensure" and brands essessence to keep his strength up.

rgds

On 2/1/2008 Richard2 wrote:

I was diagnosed with stage 4 RCC in October of 2006. I was on Nexavar for 18 months and the cancer was kept in check. No growth no spread. I had to stop taking the drug because I developed severe sores on feet and hands, and I also had diahrea which got worse with time. It does work and not everyone gets these side effects. I tolerated it for 18 months. I switched to Torisel, which I had to stop because I got pnemonia and very high glucose levels. I am now on a low dose of Sutant and I'm doing good. I will have a cat scan in 2 weeks.

Good luck to your husband and his nexavar treatment.

Richard

hi rdgs,

I too had a skin rash with Nexavar. I used calimine lotion which really gave me alot of relief. It is used to treat the rash associated with poison ivy. My rash resolved itself in two weeks.

I had mixed results with my cat scan. My primary tumor grew by 10%, and one of my lung mets grew slightly. The doctor seems to think the growth was small and I was only on Sutent for four weeks, so he wants to continue another 4 week cycle at the same dose, and increase the dose in the next 4 week cycle, and then get another scan. Thanks for writing. I hope your husband's rash clears up.

Richard

 

I am going through radiation treatments starting Sept.2,2008.I already have nexavar but have not started it yet.I'm 44 and they tell me i'm young.I first had kidney cancer at 40 and was in remission for 4 yrs until it went to my adrenal gland.I had surgery on April 28,2008 and in a catscan in June 2008 i discovered another growth in the same spot where my adrenal gland was.Sutent aggravated my heart, so it's out of the picture.Please let me know how you are doing on the Nexavar!So far i have one spot back!