CancerCompass message board discussion started by HeatherLM on 3/20/2008 http://www.cancercompass.com/message-board/message/all,22202,0.htm Fri, 05 Sep 2008 00:00:00 GMT Fri, 05 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello EveryoneMy Dad(55yrs.) was diagnosed with stage4 renal cell cancer a year ago. Started Nexavar the first month and so far it hasn't spread or gotten any worse.  My issue is that there is a 4cm tumor on his left kidney, in dozens of lymph nodes, largest one being left lower neck that was 1.5cm, and other spots that they are not sure of.  Since the start he has only had 1 Onocoligist and had one urologist look at his scans and both are saying he's inoperable.  He has lost a lot of weight and has had hand and foot side effects from the nexavar but has gone to work everyday and has only missed a few hours here and there due to doctors appt. My fear is that the Nexavar will eventually stop working and it will only get worse. I was under the impression that even if taking the kidney wouldn't cure him it was still a smart decision to just get rid of it.  Please help!ThanksHis Daughter HeatherLM Thu, 20 Mar 2008 00:00:00 GMT  On 3/20/2008 HLCMN wrote:Hello EveryoneMy Dad(55yrs.) was diagnosed with stage4 renal cell cancer a year ago. Started Nexavar the first month and so far it hasn't spread or gotten any worse.  My issue is that there is a 4cm tumor on his left kidney, in dozens of lymph nodes, largest one being left lower neck that was 1.5cm, and other spots that they are not sure of.  Since the start he has only had 1 Onocoligist and had one urologist look at his scans and both are saying he's inoperable.  He has lost a lot of weight and has had hand and foot side effects from the nexavar but has gone to work everyday and has only missed a few hours here and there due to doctors appt. My fear is that the Nexavar will eventually stop working and it will only get worse. I was under the impression that even if taking the kidney wouldn't cure him it was still a smart decision to just get rid of it.  Please help!ThanksHis DaughterHi!  My advice would be to get someone who deals with RCC exclusively.The #1 cancer clinic is MD Anderson in Houston. They are the best in finding a treatment plan for your Dad. They are comming out with new meds that may be able to stablize him if not cure. Don't forget about the Great Physician who can do exceedingly, abundantly, above all we can ask or think according to the power that worketh in us. Hope your Dad finds the help he needs and you too.                                Take Care and both of you are in my prayers                       JOHN   jorolo1 Fri, 21 Mar 2008 00:00:00 GMT Good Morning,My brother in law was diagnosed with RCC in June of 2007.  He was operated on in August to have his right kidney removed along with a 6cm tumor that was attached.  We are lucky in the regard that it was selfcontained within the right kidney however we were not lucky that it had spread to his lungs.  That was discovered when he got his first CT scan.  His doctors approach was to remove the kidney right away and deal with the spreading after surgery.   There were approx. 18-20 spots within this lungs.  He started on Sutent about 6 weeks after surgery and has completed 3 cycles (4 weeks on 2 weeks off) of 50mg .  After the first two cycles he got another CT scan and the 18-20 spots were gone and the largest spot had shrunk by more than half.   He decided to go one more cycle on the 50mg of Sutent and then his oncologist lowered it to 37 1/2mg.  He just completed his first cycle on the lower dosage and just today I took him for another CT scan.  We go to the oncologist on April 8th for the results.  His oncologist has told him that he will have to stay on the Sutent or some other drug if the Sutent stops working (actually that drug he mentioned was Nexavar) for the rest of his life.  He is receiving care through the V.A.I don't understand why your father's tumor is inoperable.  My brother in law's doctors were adamant that they get his kidney and tumor out as soon as possible.  Maybe your father should see another urologist.  Maybe your father should talk to his oncologist about Sutent.  From what I understand, great results are coming from the drug in the battle against RCC. If there is anything I can do to help, please let me know.  I have traveled down this road with my brother in law and we are still going down the road.  Don't give up....I agree with you that getting it out is better than leaving it in.  RCC is a very aggressive cancer so getting it out NOW would make a big difference.  I think your father should seek out other doctors.My very best regards,Mary Jane   MaryJane910 Fri, 21 Mar 2008 00:00:00 GMT My Mom had the same, cancer on her left kidney. The uroligist that was doing the surgery said he had to do a very large insion because the risk was too high of leaving cancer cell behind as he was removing the kidney. Hers had not spread at that time. Maybe the risk of removing a matastised tumor is too high? We were told they had removed all the cancer, until three months later when she started to have breathing problems.  We were told that the cancer had matastised into her lung bad and her right lung. She started Nexavar in December, in February she went for a CAT scan and found out her lung tumors had shrunk by 50% but her kidney had grown slightly. She has had very few reactions to the chemo and the Dr. has now told her to take one additional pill at noon. She is now on 5 pills a day. It seems to work very well if you don't develop severe reactions too it! We just have to hope that the Dr. know what they are doing, and put our trust in them! Please let me know how things are going. Hope55 Mon, 24 Mar 2008 00:00:00 GMT I do not understand why they are not taking the kidney out. If it is the source then you have to get it out. Sure he will still have the other spots but take the Nexvar or Sutent for those. Removing the kidney should cut back on the chances of more spots popping up. I would definitely get another opinion. Good Luck and my prayers are with you and your father.Kim Kim p Wed, 26 Mar 2008 00:00:00 GMT  On 3/26/2008 Kim p wrote:I do not understand why they are not taking the kidney out. If it is the source then you have to get it out. Sure he will still have the other spots but take the Nexvar or Sutent for those. Removing the kidney should cut back on the chances of more spots popping up. I would definitely get another opinion. Good Luck and my prayers are with you and your father.Kim Hi Kim,Well this last Tuesday my Dad and I met with his oncologist to get his ct scan results and its the same.  Nothing new, bigger or smaller.  I took your message into concideration and demanding a more detailed explination as to WHY the kidney can't come out.  The Dr. went into the fact that the tumor has grown so much into the surrounding tissues, blood vessels that the risk would be to high and the blood loss could be huge.  It made sense but yet I still feel that hey isn't having kidney cancer a risk?  I want to play the safe side but having a large tumor in your body isn't something that I would consider, "playing it safe".  I just hate feeling like we havn't done enough.  Thinking what if it benefits of taking it out, out way keeping it where it is.  Thanks for your messageHeather HeatherLM Fri, 04 Apr 2008 00:00:00 GMT Please take a look at the following links. I and many others that I personally know with a variety of cancers have had excellent results with this treatment....................... http://www.medpagetoday.com/HematologyOncology/OtherCancers/ http://orthomolecular.org/resources/omns/v01n09.shtml Sheila On 4/4/2008 HLCMN wrote: On 3/26/2008 Kim p wrote:I do not understand why they are not taking the kidney out. If it is the source then you have to get it out. Sure he will still have the other spots but take the Nexvar or Sutent for those. Removing the kidney should cut back on the chances of more spots popping up. I would definitely get another opinion. Good Luck and my prayers are with you and your father.Kim Hi Kim,Well this last Tuesday my Dad and I met with his oncologist to get his ct scan results and its the same.  Nothing new, bigger or smaller.  I took your message into concideration and demanding a more detailed explination as to WHY the kidney can't come out.  The Dr. went into the fact that the tumor has grown so much into the surrounding tissues, blood vessels that the risk would be to high and the blood loss could be huge.  It made sense but yet I still feel that hey isn't having kidney cancer a risk?  I want to play the safe side but having a large tumor in your body isn't something that I would consider, "playing it safe".  I just hate feeling like we havn't done enough.  Thinking what if it benefits of taking it out, out way keeping it where it is.  Thanks for your messageHeather Shemay Fri, 04 Apr 2008 00:00:00 GMT Well that does make more sense as to why they are not taking the kidney out. When my husband was about to go into surgery to have his brain tumor removed, the doctor warned us that renal tumors are very vascular ( I think this was the term for it) or in other words they tend to be more likely to bleed more. He did have to have a blood  transfusion during that surgery but it was more of a precaution.Did you dr. think if he took some type treatments and the tumor shrunk that they might remove the kidney then? Kim p Mon, 07 Apr 2008 00:00:00 GMT  On 4/7/2008 Kim p wrote:Well that does make more sense as to why they are not taking the kidney out. When my husband was about to go into surgery to have his brain tumor removed, the doctor warned us that renal tumors are very vascular ( I think this was the term for it) or in other words they tend to be more likely to bleed more. He did have to have a blood  transfusion during that surgery but it was more of a precaution.Did you dr. think if he took some type treatments and the tumor shrunk that they might remove the kidney then?The very first dr. appt. he said that we should just get rid of the kidney, sent us to an uroligist for the surgery, even set us with an appt. to meet with him three weeks after the surgery.  Then the uroligist gave us the news that there would not be any surgery.  Immediatly after that the dr. put him on Nexavar.  That was February of last year.  He said there was no way the kidney was coming out.  For us its like he is telling us that we will keep you on these pills only to give you more time rather than trying to save his life.  I'm not expecting a miracle but I would like for the dr. to give him a chance.  He is living with cancer not dying of cancer.  As of now its only in some lymph nodes and I would think its best to get at it now instead of waiting till it gets worse.  HeatherLM Mon, 07 Apr 2008 00:00:00 GMT  On 3/20/2008 HLCMN wrote:Hello EveryoneMy Dad(55yrs.) was diagnosed with stage4 renal cell cancer a year ago. Started Nexavar the first month and so far it hasn't spread or gotten any worse.  My issue is that there is a 4cm tumor on his left kidney, in dozens of lymph nodes, largest one being left lower neck that was 1.5cm, and other spots that they are not sure of.  Since the start he has only had 1 Onocoligist and had one urologist look at his scans and both are saying he's inoperable.  He has lost a lot of weight and has had hand and foot side effects from the nexavar but has gone to work everyday and has only missed a few hours here and there due to doctors appt. My fear is that the Nexavar will eventually stop working and it will only get worse. I was under the impression that even if taking the kidney wouldn't cure him it was still a smart decision to just get rid of it.  Please help!ThanksHis Daughter Hi there,After Nexavar, if they stop it, there is Sutent which is in the same drug class and actually is considered first line treatment for renal cancer.  Usually, docs will tell you the  cancer is inoperable if it spreads or gets to be a certain size but 4cm does not sound that large at all.  I would get another opinion and also inquire about anti-angiogenesis therapy.  There are procedures being done transcutaneously that may be of value like embolization. My dad is Stage IV but his tumors have progressed and he never had surgery.  Perhaps your family member can benefit.Peace.   agfordad Wed, 09 Apr 2008 00:00:00 GMT  On 4/9/2008 agfordad wrote: On 3/20/2008 HLCMN wrote:Hello EveryoneMy Dad(55yrs.) was diagnosed with stage4 renal cell cancer a year ago. Started Nexavar the first month and so far it hasn't spread or gotten any worse.  My issue is that there is a 4cm tumor on his left kidney, in dozens of lymph nodes, largest one being left lower neck that was 1.5cm, and other spots that they are not sure of.  Since the start he has only had 1 Onocoligist and had one urologist look at his scans and both are saying he's inoperable.  He has lost a lot of weight and has had hand and foot side effects from the nexavar but has gone to work everyday and has only missed a few hours here and there due to doctors appt. My fear is that the Nexavar will eventually stop working and it will only get worse. I was under the impression that even if taking the kidney wouldn't cure him it was still a smart decision to just get rid of it.  Please help!ThanksHis DaughterHi,I am so sorry.  What I meant to put was 8-9cm size tumor about 4 inches.  I just realized I put that down.  Thank you for mentioning the size otherwise I probable wouldn't have noticed.  My mind has been all over the place.  With Dad being in this position my fiance and I decided that there was no time to waste and that I would regret it for the rest of my life if he did not walk me down the aisle.  With all thats going on with Dad and the Wedding(4/12/08) I never realized my mistake.  4 cm and 4 inches make quite a difference.Thanks for the reply,HeatherHi there,After Nexavar, if they stop it, there is Sutent which is in the same drug class and actually is considered first line treatment for renal cancer.  Usually, docs will tell you the  cancer is inoperable if it spreads or gets to be a certain size but 4cm does not sound that large at all.  I would get another opinion and also inquire about anti-angiogenesis therapy.  There are procedures being done transcutaneously that may be of value like embolization. My dad is Stage IV but his tumors have progressed and he never had surgery.  Perhaps your family member can benefit.Peace.    HeatherLM Wed, 09 Apr 2008 00:00:00 GMT Heather: Sorry to hear of your Dads' condition. In Oct. of 2006 I had a 8 to 9 cm tumor in my left kidney that had all but shut my kidney off. I was lucky enough to have it removed. Then in Jan. 2007 there was 4 spots in right lung and 2 in left. My oncologist put me on 50mg. of sutent. She told me that was the the one to start out with. The side effects were horrible. My scans showed they were all diminishing. Then lo and behold in Jan. 2008 it showed they came back. More sutent, this time all gone again but 1. Next week I will have surgery to remove this golf ball sized tumor from my lower right lobe. Four weeks after I will begin torisel. I know this will be a forever thing as rcc seems to like to travel. I just wanted to share my experience and to let you know I am thinking of your family. Peace, Claudia I would love to hear from anyone about their experiences with torisel! Cloudy5450 Thu, 17 Apr 2008 00:00:00 GMT My husband's RCC has invaded his right kidney.  The kidney is non-functional and the tumor is around his Inferior Vena Cava.  He was told this is inoperable because he would probably die on the operating table due to the bleeding.  In researching these types of cancer where the IVC is involved, it appears that for those that were able to have kidney removal, the extended life was not any better than those without the kidney removal.  So, we have come to accept it and live with treatments. We've gone the Nexivar route without success and are now on the 6th treatment with Torisel.   Breny Thu, 24 Apr 2008 00:00:00 GMT