Not Sure What To Do?

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?!

 

Hi,

 my dad started Nexavar on 30.03.2006 and it stopped working just now. He needs to change on Sutent. He had his right kidney removed in '91, but the methatases came in 2004 and after interferon alfa and interleukin that is a standard kemo, we managed to get him in clinical study for Nexavar. We were so happy to get this medicine althou it was quite a gimnastic because every month we had to travel a long way from home, because it was in Germany. The doctor said that he shouldn't stopp taking it even if he got sideefects for first two month. That he should persist whatever should happen.The sidefects were terrible, it started with hand and foot sindrome(this was the worse, but lasted only in first two months), then diarrea , every day was different, his mouth felt bad. After two months when he got used to it the things went well. He got 10 kg in time, the desease was stable, and nexavar really helped. He had a good quality life and all the horor that was for the first two months payed of. It's not that the sideefects will go away after first two months, but they will be significantly reduced. You can fight them with kortizol creams for hands, diarrea medications etc..The tumors were significantly shrinked. Before this medicine he was caughing alot as he had tumors on his lungs, and his hand(tumors also on hand) was killing him with pain but the nexavar helped, we could see how his hand tumor was going smaller and he didn't need any more medicine for pain. He had also help from alternative medicine but not to help with a desease because there is nothing that they can do, but it helpt him to reduce the sidefects of medicine, he took msm that detoxifies organizam, kurkuma and some other things. If you get to need some more info, do not hesitate to ask.

This is my experience with nexavar, how will it go with sutent or torisel we shall see. In any case I wouldn't suggest the cemo because it doesn't work.Best luck.ana

I forgot to say that the medicine also made his blood presure go high but this can be fight with medications, if one doesn't work try anotherone. One time he got bleeding from his nose that we couldn't stopp but they put something in his nose in hospital and this bleeding never again happened.The foot-hand sindrome is the worst, I never saw my dad crying. Only in this period, but this will go away. The diarrea was also bad but if it persist you can alwais go on redusing the dose. For two weeks he was taking just two pils insted of 4 and the diarrea went away. For all the period he was takin vitamin C and B stress complex, kurkuma, and omega3. Other suplements we were changing according to sideefects.

There, hope that this will help.

I too was diagnosed with RCC on 10/06, had my right kidney removed, have small lung metastises, was in the Sutent/Nexavar study (had Nexavar) for 1 month until I developed a brain tumor which was removed in Jan. 07, followed by 1 month of WBRT and am now on my 5th course of Sutent for the lung metastises.  So far, all of the tests have been positive & I am living a normal life.  There are some side effects of these treatments, however they are minor compared to the alternative.  The expense is significant but help is available if you don't have good insurance.  My understanding is that Sutent is considered the first line drug, followed by Nexavar & Temsirolimus. A few years ago, RCC patients wouldn't have had these choices.  If you can stabilize the disease now, you may be able to lead a normal life for years to come plus there are many promising new treatments being investigated.  I hope this helps & good luck.  D.G.S.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

My RCC had metastacized to my lungs, and only kidney. I was on Sutent for 6 months, with a slight reduction in the size of tumors. It depressed CBC levels so I went on Nexavar. After 6 months there was no improvement. Noth made me susceptible to infections like UTIs.

I am now on Torisel IV Chemo. Side effects have been minimal. This is the latest RCC drug.

RCC can appear anytime and at any place.

 

Good luck.

 

Ron 

 

 

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 had my  right kidney removed in July due to RCC.  No further treatment as nothing in the lymph glands.  My urologist/surgeon said I was fine.  Blood test showed creatine at 2.1.  When my oncologist (previous Breast Cancer patient) became aware of the 2.1 level, she had me see a nephrologist immediately.  He does not go by creatine level only - he uses the GFR (not sure of initials) which ended up making more sense due to the ongoing problems I was having. 

 I put more faith in my nephrologist than in the urologist/surgeon.  This is not to tell you what you should or should not do.  Perhaps another opinion would be a good thing about now.

God bless!

Susan B.

You can not be sure that they got all the cancer cells and you say that one doctor says it did spread.

I am in a very similar situation.  I am 53, I had my right kidney removed in August with RCC.  My cancer barely touched into the adrenal gland which put me into a stage 3.  Other wise there was no spread and all my nodes were clean.  My oncologist looked into the current  clinical trials going on with Nexavar and Sutent but because I also had a bladder tumor of a different type I did not qualify.  He presented me to his practice of 6 physicians and half of them reacted conservatively and  thought it would not be worth me trying the drugs which I could use outsdie the clinical trials. 

MY physician and spouse and I agreed to start the Nexavar. I had read about the side effects and patient blogs describing the side effects. It is hard to sit back and do nothing and wait and see if the cancer recurs.  I started Nexavar mid September. I did lose my hair about the third week. I feel good except 3 different times my feet have become painful and then  areas peeled off.  2 times I went off the medicne for 2 days.  This last time , over Thanksgiving I stayed on the medicine and found the duration of painfulness to be the same .  When the pain occurs I spend about 2 days with my feet elevated.  Sometimes I uses ice or take Tylenol.  The pain is only extremely bad when I have to get up and walk to the bathroom.  I have altered my life style somewhat, buying more comfortable shoes, staying off my feet some during the day, I quit working out at the gym and running because the repetitous movements and friction on my hands and feet seem to aggravate the problem. 

In summary, I am glad to be able to try something to way lay this disease.  I hope I can continue the drug for the entire year.I have had so many friends who have had cancer recur and they wished they had been more aggresive in the beginning.  Hopefully, this will never return but I want to think I have tried everything available to me.  

I too have had my right kidney removed in 6-2006 and they also said I was clean and no signs, but after six months it appeared in my ribs.  I am on Sutent 37.5 mg I have been on it for six months.  It only takes one cell to spread.  I wish I would have been on sutent after my kidney was removed maybe it would have not gone to my ribs.  Side effects are controllable it is well worth it.   My cancer in my ribs have gotten a little smaller in my last scan.    Good Luck you are in my prayers.  tanktoneian

Mom mom has been on Sutent for three weeks now with a week break in between due to a bad cold and a few days in the hospital.  She has advanced kidney cancer.  She had kidney cancer 14 years ago and it just now decided to rear its ugly head.  It has returned in her pancreas, liver and lungs.  So far the side effects have been minimal and we can't tell if some things are from the Sutent or from the remaining cold that she needs to get over.  The biggest things she is annoyed with is the taste in her mouth and the sores that have developed.  We have handled this by making protein shakes, cottage cheese with fruit and anything else cold that soothes her mouth. Also there is a mouthwash called biotene that works very well.  My mom has been going to work for a few hours each day but does get tired.  She still goes to an occasional store but has to be careful not to get sick again.  Sutent does not attack your immune system like other forms of chemo do.  The research on Sutent proves to be very good so far.  Stay positive and use the power of prayer.