E-mails and referrers for this blog tend to run 60% on which is better, Sutent or Nexavar? Since I have experienced both, I will say which ever one best keeps you alive. But I have to admit, at least for me, the side effects of Nexavar were just terrible and after three treatments I threw in the towel (were it not for Sutent I would have simply had to grin and bear it). I have now been on Sutent for four full regimens. Several people writing in have asked if Sutent has shrunk any of my tumors. No. Not as far as we can see. Nor have they grown. It has been a lot like sitting in a running car, the gear shift in neutral, revving the motor and not going anywhere. Even so, the SEs have not been fun, but nothing like Nexavar. I am still on "vacation" from Sutent, but expect to go back on it tomorrow.
I got a note from a reader who found that Sutent might have been affecting her thyroid and that, in turn, was creating her extreme fatigue. Interesting thought, though nothing in the literature I have read mentions the thyroid. But those of us on either Sutent or Nexavar must remember these are brand new drugs and there is still a world of information the medical folks do not have. Not a bad idea, if you are in deep fatigue, to ask your doc about the thyroid.
The lady who wrote me about the thyroid also mentioned she is now going on Nexavar in a hope of speeding up the results (positively). She is in a wheel chair and therefore may not suffer what, for me, were the debilitating side affects of the feet that after three months were not (so I concluded) going away--ever. But Nexavar does have some psychological advantages: Four capsules a day as opposed to one, the primary difference. Despite the pain (or perhaps because of it) you may just feel like you are kicking more cancer arse and sometimes that goes a long way to getting the job done. A car in neutral has little value. On the other hand, no one has told me they are having more success with Nexavar than with Sutent. Would love to hear from someone who has experienced improvement from Nexavar.
New ARCC warriors are generally in a real frenzy to get on with getting cured and that certainly is a natural desire. But after two years (last month) I have learned that for most ARCC warriors this is a long affair with a normally slow growing cancer. When they found the tumors in my brain last fall I freaked out pretty good. Six months ago, they treated them with the gamma knife. I was hoping by now they would be gone, but not so. But the fact there are not (knock on wood) any new ones and these are not growing, I take as God's favor.
As for Nexavar over Sutent (or vice versa)...thank the Lord for both regardless of the SEs. Without them I (and perhaps you) would have no use for any automobile, in neutral or not.
I lasted on Nexavar for about three months. The SE were just to overwhelming.My daughter in law who has lymphoma told me about Low dose Naltrexone,4.5mg. I have been taken that for about a year now and although there is some growth in my rt adrenal which is now at 10cm, I feel comfortable most of the time and I believe it is having some effect.My onco offers little. He did mention Afinitor but after reading the SE I decided against it.
So I just cross my fingers and take it 1 day at a time.
Posted by: Paul Shafiroff | November 07, 2009 at 04:01 PM
Dear Dave Foster;
I'm searching around the sites for info on Nexavar so I can get an idea as to what I'm in for.
I had a right rad nephrectomy in Oct 2003 and I have been on Sutent since it was released for two and one half years (26 cycles+) and my Onoclogist feels that it is no longer effective. My tumor which is on the left adrenal gland has reached 9.4cm x7.6 cm along with a bunch of nodules in both lungs. During the course of Sutent, the tumor would grow a few centimeters stop for 6-8 months, sort of flatten out and start up again, almost as if the tumor has a periodic growth cycle.The lung nodules would grow and shrink likewise. So, it was hard to tell if the Sutent was working althought it could be said perhaps it stabilized the growths.
My Oco offered me Nexavar and I just started it three days ago and I'm already feeling very fatiqued, moreso than with Sutent.Hopefully I may be able to get some shrinkage which hopefully will releive some of the pressure in back (annoying ache).
My Oco also suggested Torisel, however a friend I knew with the same condition as I have had a terrible reaction to it in his lungs.
My Oco also suggested Avastin which is presently being studied.
So, I just thought I would share this with you and maybe you have so info to share on Nexavar. Thanks, Paul
Posted by: Paul Shafiroff | February 06, 2009 at 09:20 PM
My dad has been on Nexavar for five months now for RCC. He has had a large tumor on each kidney. Nexavar has shrunk them quite a bit and we are about to hear if it has continued to do so. We're hoping he will qualify for the procedure cryoablation-to freeze dead the tumors, since he is not a surgery candidate. His side effects have been rough. First his feet were effected terribly making it quite painful to walk. Then his oncologist recommended some inner soles that he found have helped tremendously. Then the SEs changed to diarrhea and constipation. This part has been a terrible roller coaster. He's now lost 22 lbs. and has weakness and not able to walk too far at any one time. We were helped tremendously financially by applying for assistance through some wonderful Patient Assistance Programs. NORD is one (Nat'l Organization of Rare Diseases)and we also applied to the Pt. Advocate Foundation. Look them up on the web and fill out their apps for assistance asap. Good luck!
Posted by: Elena Parsons-Wilson | January 13, 2009 at 11:00 PM
My dad has been on Nexavar for five months now for RCC. He has had a large tumor on each kidney. Nexavar has shrunk them quite a bit and we are about to hear if it has continued to do so. We're hoping he will qualify for the procedure cryoablation-to freeze dead the tumors, since he is not a surgery candidate. His side effects have been rough. First his feet were effected terribly making it quite painful to walk. Then his oncologist recommended some inner soles that he found have helped tremendously. Then the SEs changed to diarrhea and constipation. This part has been a terrible roller coaster. He's now lost 22 lbs. and has weakness and not able to walk too far at any one time. We were helped tremendously financially by applying for assistance through some wonderful Patient Assistance Programs. NORD is one (Nat'l Organization of Rare Diseases)and we also applied to the Pt. Advocate Foundation. Look them up on the web and fill out their apps for assistance asap. Good luck!
Posted by: Elena Parsons-Wilson | January 13, 2009 at 10:59 PM
My dad has been on Nexavar for five months now for RCC. He has had a large tumor on each kidney. Nexavar has shrunk them quite a bit and we are about to hear if it has continued to do so. We're hoping he will qualify for the procedure cryoablation-to freeze dead the tumors, since he is not a surgery candidate. His side effects have been rough. First his feet were effected terribly making it quite painful to walk. Then his oncologist recommended some inner soles that he found have helped tremendously. Then the SEs changed to diarrhea and constipation. This part has been a terrible roller coaster. He's now lost 22 lbs. and has weakness and not able to walk too far at any one time. We were helped tremendously financially by applying for assistance through some wonderful Patient Assistance Programs. NORD is one (Nat'l Organization of Rare Diseases)and we also applied to the Pt. Advocate Foundation. Look them up on the web and fill out their apps for assistance asap. Good luck!
Posted by: Elena Parsons-Wilson | January 13, 2009 at 10:56 PM
My dad has been on Nexavar for five months now for RCC. He has had a large tumor on each kidney. Nexavar has shrunk them quite a bit and we are about to hear if it has continued to do so. We're hoping he will qualify for the procedure cryoablation-to freeze dead the tumors, since he is not a surgery candidate. His side effects have been rough. First his feet were effected terribly making it quite painful to walk. Then his oncologist recommended some inner soles that he found have helped tremendously. Then the SEs changed to diarrhea and constipation. This part has been a terrible roller coaster. He's now lost 22 lbs. and has weakness and not able to walk too far at any one time. We were helped tremendously financially by applying for assistance through some wonderful Patient Assistance Programs. NORD is one (Nat'l Organization of Rare Diseases)and we also applied to the Pt. Advocate Foundation. Look them up on the web and fill out their apps for assistance asap. Good luck!
Posted by: Elena Parsons-Wilson | January 13, 2009 at 10:55 PM
My warrior is on Nexavar, because while Sutent was presented as the better option with regards to effectiveness, his diabetes and pre-existing heart conditions made it a very undesirable choice. The SEs we have experienced are extreme fatigue, loss of appetite, sores in the mouth( but none on the hands/feet), hair loss and sores on the scalp. When we called the doctor( who by the way, isnt the schmucky kind) he suggested cutting the dose in half and see what happens. Within 3 days, my warrior was a new man. The positive things from Nexavar: After 5 months, tumor shrinkage across the board by as much as 2/3 and no new growths. However, after 3 months on the reduced dosage, 2 mets started to grow, but nothing new was discovered. However, we are now 5 more months on 3/4 of the original dosage, and new mets have been seen in the bones. We are awaiting the newest CT results, and are already lining up a consult back at Duke with the oncologist we have on board there (we live in Virginia). Overall, we have had a little over a year on the Nexavar, and the quality of life has been pretty good for the most part. We really wished we could have been put on Sutent, but the risks were too great( Ok...THAT is an oxymoron!) Take care,
Cindy
Posted by: Cindy | August 11, 2007 at 10:20 AM
My son is 49 years old, he had a liver transplant Sept.15,2006. Nine months later he was told he had inoperable liver, pancreatic and kidney cancer. He had his transplant in Tampa Florida through Life Link.. I told him he needed a lawyer not a doctor... He went to a new oncologist, after doing scans etc he was told he had two months to live. He offered treatment with Nexavar. He has been on it for almost three weeks and the SE are awful. The palms of his hands and the soles of his feet are extremely sensitive to warm water. He has problems swallowing and keeping food down; of course he has lost a lot of weight.. and has a lot of fatigue. He was lucky that his insurance company consented to pay for the Nexavar because he sure couldn't. I would be interested in hearing other comments about Nexavar.
Jeanie
Posted by: Jeanie | August 10, 2007 at 06:26 PM
I have been on Nexavar for five months and some of my side effects, which seem to move around, get more painful and then recede, have not been a great experience. Especially my feet have suffered from soreness and inflamation. Just recently, my hair has started to fall out--and I am having my thyroid level checked out to see if there is a problem there. Doctor can't tell me if tumors are stable or growing and am wondering just how great this medication really will work for me.
Any comments?
Posted by: Pat | August 07, 2007 at 02:30 PM
You make no mention as to how you finance nexavar/sutent. To 99% of us this is an a massive problem,way beyond such things as coping with side effects.
Posted by: gerald shenton | June 04, 2007 at 08:59 AM