Not sure what to do?

I'm so glad I can help or I can tell you what I went true.  I had the right kidney remove November 2006. In February 2007 I've been told by my oncologist that I had mestatic around the stomach, Last July I started the SUTENT. In my case theirs only two treatment that can help. Interleukin2 a very intense treatment but that can hill 1/ 20 people. I will probably have the treatment in January 2008. I will know more when I will see my oncologist December 7.  I took SUTENT 4 X 28 days.  One cycle last 28 days you have to take a brake 14 days and start again. You really need your brake. In my case the SUTENT help the monastic to be stable but the last two SCAN showed a very small diminution of certain metastatic.  Each month I have different side effect but like I tell everyone it could be worst.  The side effects are something that I can leave with. Example: Grey hair, I lost some but still have a lot. My mouth is very sensitive and different taste (nothing taste good don’t eat spicy and use sensitive toothpaste). Feet and finger will burn if you cut your cuticles and sand your feet (put allot of cream you don’t want them dry). If you bang your self you will browse easy. You have very sensitive skin. Since I take the SUTENT I ‘ve been using Aveno soap and cream and a shampooing for sensitive skin.  To colour my hair I take without ammoniac. Your habit will change but from one month to the other it’s easier. In 28 days theirs probably only 4, 5 days that I don’t feel well and it’s at the end of the 28 days.  Be positive continue doing what you are doing and when you are tired, relax... Hopping I helped you.

On 11/28/2007 Goldragn wrote:

My wife was diagnosed with RCC on 10/23/07 and soon thereafter had her left kidney removed.  Initially she was labeled Stage II since it was all contained and had not spread.  The CT scan and Xrays all show clear with no Tumors.  When the pathology came back it showed with the stain test that the cancer had touched the area of the uterer and because of this our new oncologist has changed her to Stage III.

He has recomended that she get into a clinical trial for Sutent and Nexavar for her diagnosis.  The study is for patients without mestatic RCC to see if this medication will help in keeping it non-mestatic. My concern is all the side affects that I have read here and on other sites regarding these medications. Is it worth the risk to take the meds or not do anything at all.  The Nephrologist believes that it was all contained and that he did not see any signs of it spreading during the procedure to remove her kidney. 

Has anyone out there been a similar situation?  I am continuing to research this but since this is a clinical trial not sure if there is really any results from this yet.  My concern is that the new meds would knock her down and make her sicker than she needs to be.  Only want whats best for her and would like to preserve her any uneeded complications.  The other concern is that they find this is extremely beneficial in stopping the future growth of tumors and she did not take advantage of this.

So many questions?!

 

 

 

On 11/28/2007 Goldragn wrote:

My wife was diagnosed with RCC on 10/23/07 and soon thereafter had her left kidney removed.  Initially she was labeled Stage II since it was all contained and had not spread.  The CT scan and Xrays all show clear with no Tumors.  When the pathology came back it showed with the stain test that the cancer had touched the area of the uterer and because of this our new oncologist has changed her to Stage III.

He has recomended that she get into a clinical trial for Sutent and Nexavar for her diagnosis.  The study is for patients without mestatic RCC to see if this medication will help in keeping it non-mestatic. My concern is all the side affects that I have read here and on other sites regarding these medications. Is it worth the risk to take the meds or not do anything at all.  The Nephrologist believes that it was all contained and that he did not see any signs of it spreading during the procedure to remove her kidney. 

Has anyone out there been a similar situation?  I am continuing to research this but since this is a clinical trial not sure if there is really any results from this yet.  My concern is that the new meds would knock her down and make her sicker than she needs to be.  Only want whats best for her and would like to preserve her any uneeded complications.  The other concern is that they find this is extremely beneficial in stopping the future growth of tumors and she did not take advantage of this.

So many questions?!

 

 

I for got to tell you that I have resumed on a half dose.  My oncologist says that the people that react have the most response to the drug.  I try to keep this in mind when I am in bed those 2 days.

had kidney removed in 2001 doctors said all clear no cancer

cancer came back in bone on leg and in lungs

been on sutent for a year some side effects but better then not doing any thing 

My husband was diagnosed with RCC stage IV last November.  Surgery was not even an option for him because the cancer had spread...metatasied outside the original site.  His Dr. immediately suggested Nexavar, and it was available thru his office and mailed directly to us.  For us the NExavar did not do what our Dr. thought it should, so we went to Sutent.  This too was available through thru the Dr.s office and direct to a pharmacy.  The Nexavar side effects were more than the Sutent.  Hand-Foot syndrome, Fatigue, Diaherra, Nausea..and with the Sutent..it was more the others than the hand-foot syndrome.  We have progressed to an infusion drug called Torisel.  Seem to be doing much better with it.  Will have our first cat-scan since being on it, 12/10.  But, also, we are set apart by the fact Jim has had both hips broken, followed by surgery and recovery.  Both were being radiated, but the 2nd hip, he fell and crushed the bones...which are fragile anyway.  Hope this is not too long and detailed....Glad to discuss anytime.  It helps!!!

 

On 11/28/2007 Goldragn wrote:

My wife was diagnosed with RCC on 10/23/07 and soon thereafter had her left kidney removed.  Initially she was labeled Stage II since it was all contained and had not spread.  The CT scan and Xrays all show clear with no Tumors.  When the pathology came back it showed with the stain test that the cancer had touched the area of the uterer and because of this our new oncologist has changed her to Stage III.

He has recomended that she get into a clinical trial for Sutent and Nexavar for her diagnosis.  The study is for patients without mestatic RCC to see if this medication will help in keeping it non-mestatic. My concern is all the side affects that I have read here and on other sites regarding these medications. Is it worth the risk to take the meds or not do anything at all.  The Nephrologist believes that it was all contained and that he did not see any signs of it spreading during the procedure to remove her kidney. 

Has anyone out there been a similar situation?  I am continuing to research this but since this is a clinical trial not sure if there is really any results from this yet.  My concern is that the new meds would knock her down and make her sicker than she needs to be.  Only want whats best for her and would like to preserve her any uneeded complications.  The other concern is that they find this is extremely beneficial in stopping the future growth of tumors and she did not take advantage of this.

So many questions?!

 

 

please go for the treatments with sudent and nexavar...these two newer drugs are like miricle drugs. they both cut of the blood supply to cancer cells.from what i've seen personally i believe after surgery even when they removed the entire mass of cancer it's soo  important to have chemo or oral chemo to get rid of every little even fragments of cells that could be left or just starting to grow.my husband has stage 4 rcc and he is currently on nexavar ,avastin ,and 10 boughts of radiation.he has a scan today, please pray..

god bless you,  i'll pray for you and your wife.

pat  

 

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

 

 

 

 

 

This use of Sutent or Nexavar, to prevent recurrence when all cancer has been removed surgically, is called adjuvant treatment. 

Before Sutent and Nexavar, there was no approved adjuvant treatment for RCC, but some studies were done with interferon, low dose interleukin-2 (wich both have significant side effects), and vaccines mades from the patients own tumor.  Sutent and Nexavar are both newly approved; it will take years before we know if they really work as an adjuvant treatment.  

Studies to see if specific adjuvant treatments work take a long time to complete, and quite a few patients to show results because some patients will never have a recurrence.  I have a relative who has gone 12 years without a recurrence (stage 1),  It is uncommon, but certainly not unknown for the RCC to recurr after an even longer period.  Also, with RCC, since the cancer sometimes comes back many years after surgery,  a study done which follows patients, say two years, will miss many instances of patients having recurrences later than this.  (See http://cancerguide.org/adjuvant.html for more detailed information about adjuvant treatment).   Most recurrences do occur within a few years of surgical treatment.  When a recurrence occurs many years after surgical treatment, it is more likely to come back in only one or two places, and can often be treated with surgery--or another drug might have been developed in the meantime--if the recurrence is discovered quickly.  This is why RCC patients should have follow-up studies done for the rest of their lives.  See http://cancerguide.org/index.html for good information on researching options and deciding which treatment to pursue. 

At this point, good data from studies of Stuent and Nexavar as adjuvant treatments really don't exist, so we don't really know if either of these drugs will prevent recurrences.  However, there is no other approved adjuvant treatment.  Your wife will have to decide whether the downside of the side effects are worth the possible (but as yet unknown) benefit.  It is a difficult decision.

 Also, there is an email support list specific to RCC/Kidney cancer.  See http://cancerguide.org/kofaq/ to join.

 

 

On 11/29/2007 favsispatty wrote:

 

On 11/28/2007 Goldragn wrote:

My wife was diagnosed with RCC on 10/23/07 and soon thereafter had her left kidney removed.  Initially she was labeled Stage II since it was all contained and had not spread.  The CT scan and Xrays all show clear with no Tumors.  When the pathology came back it showed with the stain test that the cancer had touched the area of the uterer and because of this our new oncologist has changed her to Stage III.

He has recomended that she get into a clinical trial for Sutent and Nexavar for her diagnosis.  The study is for patients without mestatic RCC to see if this medication will help in keeping it non-mestatic. My concern is all the side affects that I have read here and on other sites regarding these medications. Is it worth the risk to take the meds or not do anything at all.  The Nephrologist believes that it was all contained and that he did not see any signs of it spreading during the procedure to remove her kidney. 

Has anyone out there been a similar situation?  I am continuing to research this but since this is a clinical trial not sure if there is really any results from this yet.  My concern is that the new meds would knock her down and make her sicker than she needs to be.  Only want whats best for her and would like to preserve her any uneeded complications.  The other concern is that they find this is extremely beneficial in stopping the future growth of tumors and she did not take advantage of this.

So many questions?!

 

The only option I am aware of to get sutent or nexavar was to enroll in a clinical trial  because my rcc has not mastasized, I tried to enroll but I did not qualify because I had passed a 12 week post op time frame. I will pray for you and your husband.  Maria

please go for the treatments with sudent and nexavar...these two newer drugs are like miricle drugs. they both cut of the blood supply to cancer cells.from what i've seen personally i believe after surgery even when they removed the entire mass of cancer it's soo  important to have chemo or oral chemo to get rid of every little even fragments of cells that could be left or just starting to grow.my husband has stage 4 rcc and he is currently on nexavar ,avastin ,and 10 boughts of radiation.he has a scan today, please pray..

god bless you,  i'll pray for you and your wife.

pat  

 

--Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--